Dad and I began the day with mom this morning. She was awake and very, very talkative. They changed the trach to a smaller size---from an 8 to a size 6--this is a step in the right direction.From here, she either gets progressively smaller trachs or she just caps off the trach she has for longer and longer periods until the trach finally comes out. Mom is already progressing quickly and is on a fast track toward getting the trach out!! I could hear her and have a conversation with her! She spoke softly but if I put my ear to her mouth, I could hear her clearly!! I asked her if she slept well last night and she told me, "Hmm...did I sleep well? I think so. Yeah." When I asked if she woke during the night, she said, "Uh...yes, I did and I watched TV." We talked about visitors and she asked about and commented on the pictures on her walls. We told her who came to see her over the summer last year and somehow we mentioned that she had been in a coma for 3 months last summer and that many people came to see her and pray for her and sing to her. She was so touched. I showed her the "Love Notes to Dotty" book one and she almost began to cry as she read the passages people wrote to her. She even said, "Kathy look at this one!" a few times. It is amazing how, before, mom went through the motions of activities, tasks...and now...she does the same things but her emotions are coming back finally. Her emotions were the last thing to come back to life.
She went to see the neurosurgeon today for a post surgical follow up and all went well there. When the EMS people came to transport mom, they realized a mistake had been made---they were prepared for and expecting a vent patient. Mom hasn't been on the vent for over 3 1/2 weeks now. They sent 3 paramedics and a guerney instead of a wheelchair vehicle. At one point, one of the paramedics said they were going to put her back on the vent to transport her!!!!!! Thank GOD I was there to say, "Absolutely not!!!" Advocacy is needed every step of the way. The facility had left the abdominal staples in for 3 weeks and wouldn't remove them (even though they removed the staples in mom's head). They kept insisting it was good to leave them in so long, but the neurosurgeon didn't agree. The ride there took over an hour. The wait took 40 minutes and the examination took like 6 minutes!! Thank God is was a great report though! Mom does NOT have a programmable shunt which means she can get MRIs...with no problem. She also does not have a soft spot on her head...the skull is still there and was never removed! The neurosurgeon said that the resident gave us the wrong information and must have confused patients. We will check the information on the records that the facility has to be sure they are right. When we all got back to the facility (we left at 9:30 a.m. and returned at 1:30 p.m.), mom was going to watch a movie but she never got there. At one point, dad left to run errands and I cracked a joke about it but mom stuck up for dad and said, "He has important things to do!" Claudia came to see mom with Paula, Claudia's friend, and mom was surprised to see them but kept falling asleep. She woke later in the afternoon when dad came back but fell asleep around 7 so dad tucked her in for the night.
"I will be with you and I will protect you wherever you go" Genesis 28:15
Wednesday, June 29, 2011
Tuesday, June 28, 2011
Mom Update, June 28, 2011, Tuesday
I began the day with mom this morning. Claudia and John are on a brief but much needed get-away. Mom was asleep and totally crooked in her bed this morning. It looked like her legs were almost off the bed. I straightened her and put her hearing aids in and glasses on. Her CNA came to get her ready for the day. The bed sore on mom’s lower back (sacrum) is almost totally healed!! PTL! Mom was in a kind, good mood when she woke and talked much to the nurse, CNA, and me. Carmine, John and Con’s cousin, came to visit and work with mom this morning. He couldn’t get over how great she looked and behaved and it was actually not a great morning for mom. He asked mom what her favorite food was and she said she didn’t know so I asked if peorogies are her favorite food and mom said yes but also pronounced the food in the proper Ukranian manner. Mom’s roommate had the TV on very loud all night long. One of the CNAs kept coming in to shut the TV but the roommate turned it back on. Mom was up all night. So as a result, she slept for the majority of the morning…while I, Carmine, and Anthony and Samantha were visiting with her. Her trach was capped again today while Carmine visited. It was capped for 2 ½ hours with only the nose oxygen used. She did GREAT---even though she was sleeping, her breathing was fine. Carmine asked mom what her phone number was and mom said she didn’t know so I said the first 3 numbers and mom said the remaining 4!! I asked her address and she said she didn’t know again and then I gave her the first number and she said it and then the first sound of the street and she said it!!! Carmine said he will be working on helping build strength in mom’s muscles to help her swallow again. He said that this strengthening should have been done before offering mom food. He is going to teach us how to do the exercises. God bless Carmine. He is such a wonderful person to give his time like this to mom. Mom left for PT as Anthony and Sammy were leaving. Dad said that the therapist told him mom did great again today and that she only became distracted a few times but gave him her attention again right away when he called her back to task. When I came back to see mom this afternoon before work, mom was in bed flipping through a magazine. She talked to me on and off but basically remained engrossed in the magazine. I asked mom if she was ready to work and she said, “No my head hurts now” and closed her eyes. Did asked if she was sleeping and mom said yes. We all laughed at that! Although mom did fall asleep then. Dad said mom woke up for a long while after I left. He tucked her in for the night. Mom's physical therapy and respiratory therapy (capping the trach) are good things that take up a large part of her day. Our family therapies become difficult to do on a daily basis now. Mom grows stronger each day.
"The Lord is my strength" Exodus 15:2
"The Lord is my strength" Exodus 15:2
Monday, June 27, 2011
Mom Update, June 27, 2011, Monday
Lenny began the day with mom this morning. He said that mom woke right up and was very alert and talkative. Lenny said that mom complained of back pain almost immediately so Lenny tried to make her laugh and said, “It’s OK Nonny. It’s safe—I’m not gonna make you work and Aunt Claud and mom are not here!” Mom laughed and said, “Oh stop!!” Lenny said just like she used to. They talked and talked for a long while (something Lenny and all of us have missed for so long!). Mom talked out loud a few times too. At one point, Lenny said that mom kept feeling the back of her head and Lenny said “What’s wrong Nonny?” Mom replied, “There’s hair missing! Why?” Lenny said it was Ok and that it was just from her surgery. Mom said, “It looks terrible” (wow, is that a “mom” comment!) and Lenny assured it that it doesn’t look terrible. When mom’s CNA came in to give mom a shower, mom made a face and when Lenny asked her what the “face” was about, mom smiled and said, “Because!” and laughed.
When I arrived, mom had just been brought back from physical therapy, though I didn’t see her or the therapist bring her back (so I don’t have details yet)…but mom was sound asleep in the wheelchair. I let her sleep. While she sleeps, she doesn’t cough—thank God. She still coughs quite a bit on and off when she is awake though. I will find out why.
The respiratory therapist told me that as soon as mom wakes up and is alert again, MOM GETS HER TRACH CAPPED!!!! This is a huge step!! For one thing, mom will be able to speak audibly!! For another thing, mom will be breathing ALL ALONE with no oxygen or anything!!! PTL!!!! I can’t wait!!
The aides and staff workers all love mom so much. Many of them scold me for not keeping her what they think is warm enough or with the right pillows or at the right comfort level!! They all are too cute. Mom is covered in and surrounded by so much love. Mom’s new roommate is a challenge though. This poor person is not very appropriate at times and is often totally exposed (nude from waist down) from removing her covers… I have to continually get someone to cover her back up. We all have to pass her on the way to mom’s bed so there is no way to ignore her. Her TV is constantly on and LOUD…and on silly, inappropriate stations (some are upsetting even). Lord help me to love on her too.
Dad brought mom some roses yesterday and mom said, “Ohhh…how beautiful!!” Somethng new now is that mom wants privacy at private times again. Once mom was finished with her nap, she was put back into bed and then the respiratory person came to cap off her trach!! They just capped the trach and dad and I and the respiratory therapist gathered round mom as she spoke her first word: “HALLELUJAH!!!” The therapist began to do the “Happy Dance” and dad and I cried! Mom did great breathing with no assistance at first for about 10 minutes!! She began to panic a bit after that and said, “I can’t breath!” I reassured her and stroked her hair and told her I would make “snaps” in her hair and she smiled broadly in fond recognition. Mom cleared her throat a lot and when she coughed 3 times, she popped the cap off the trach! I joked with her about how she reminded me of a blow spout on a whale or that she could aim at someone and shoot! Then she needed the oxygen plugs at her nostrils because the trach in her throat now is too large. The size of the trach tube will need to be changed soon. I distracted mom with conversation about my jewelry…and it worked in calming her down. She breathed well. Mom also said, “I love you Kathy” and “I love you” to dad. Watching mom’s reactions of love toward dad is so cute to watch—it’s like she is in love with him all anew! Mom stayed with the trach capped for 1 ½ hours!! She concentrated on breathing more than she did talking while capped. Dad said that by 4:30 mom fell out like a light and slept straight through until he tucked her in for the night and left around 6:45 p.m.
"He breathed the breath of life into the man's nostrils, and the man became a living person." Genesis 2:7
When I arrived, mom had just been brought back from physical therapy, though I didn’t see her or the therapist bring her back (so I don’t have details yet)…but mom was sound asleep in the wheelchair. I let her sleep. While she sleeps, she doesn’t cough—thank God. She still coughs quite a bit on and off when she is awake though. I will find out why.
The respiratory therapist told me that as soon as mom wakes up and is alert again, MOM GETS HER TRACH CAPPED!!!! This is a huge step!! For one thing, mom will be able to speak audibly!! For another thing, mom will be breathing ALL ALONE with no oxygen or anything!!! PTL!!!! I can’t wait!!
The aides and staff workers all love mom so much. Many of them scold me for not keeping her what they think is warm enough or with the right pillows or at the right comfort level!! They all are too cute. Mom is covered in and surrounded by so much love. Mom’s new roommate is a challenge though. This poor person is not very appropriate at times and is often totally exposed (nude from waist down) from removing her covers… I have to continually get someone to cover her back up. We all have to pass her on the way to mom’s bed so there is no way to ignore her. Her TV is constantly on and LOUD…and on silly, inappropriate stations (some are upsetting even). Lord help me to love on her too.
Dad brought mom some roses yesterday and mom said, “Ohhh…how beautiful!!” Somethng new now is that mom wants privacy at private times again. Once mom was finished with her nap, she was put back into bed and then the respiratory person came to cap off her trach!! They just capped the trach and dad and I and the respiratory therapist gathered round mom as she spoke her first word: “HALLELUJAH!!!” The therapist began to do the “Happy Dance” and dad and I cried! Mom did great breathing with no assistance at first for about 10 minutes!! She began to panic a bit after that and said, “I can’t breath!” I reassured her and stroked her hair and told her I would make “snaps” in her hair and she smiled broadly in fond recognition. Mom cleared her throat a lot and when she coughed 3 times, she popped the cap off the trach! I joked with her about how she reminded me of a blow spout on a whale or that she could aim at someone and shoot! Then she needed the oxygen plugs at her nostrils because the trach in her throat now is too large. The size of the trach tube will need to be changed soon. I distracted mom with conversation about my jewelry…and it worked in calming her down. She breathed well. Mom also said, “I love you Kathy” and “I love you” to dad. Watching mom’s reactions of love toward dad is so cute to watch—it’s like she is in love with him all anew! Mom stayed with the trach capped for 1 ½ hours!! She concentrated on breathing more than she did talking while capped. Dad said that by 4:30 mom fell out like a light and slept straight through until he tucked her in for the night and left around 6:45 p.m.
"He breathed the breath of life into the man's nostrils, and the man became a living person." Genesis 2:7
Sunday, June 26, 2011
Mom Update, June 26, 2011, Sunday
Please continue to pray for our family as we go through many trials and tribulations. The prayers work and mean so much to us all. Thanks.
When Claudia came to start the day with mom, mom was being put into her wheelchair. Claudia put her hearing aids in and glasses on while her CNA combed her hair. The CNA told Claudia to take mom outside. Claudia tried to take her outside but the head of respiratory has to clear her first. So they didn't go outside but they were able to take mom for a ride through the facility!!!! This is a first!! Mom wasn't upset with not going outside; she said, "Whatever, I'll go outside tomorrow." They brought mom to the facility computer room and looked at mom's e-mail. Mom seemed to like that! Then, they watched Jean on youtube along with some episodes of MASH. Then dad and Claudia asked mom if she wanted to go for a ride and mom said "Sure, help me get up" and then grabbed the desk and tried to get up to walk!!! She can't walk yet though!! She isn't physically able to--but it's great that she wants to do this! Earlier in the day, Claudia tried to do pegs and the pegboard with mom but Claudia said mom wasn't having a cognitively favorable day. Mom didn't know what to do with the pegs at all. She appeared to be confused. When it was time to clean up, she put the pegs in correctly! Claudia took out the canister and the buttons. She asked mom if she wanted to do it and mom said "Yes, I want to." Mom put a few buttons in correctly but then began to knock them off the table (she did that with the pegs earlier too). Mom looked at magazines with Claudia next. At one point, Claudia was doing her schoolwork next to mom with her computer and mom kept grabbing the computer and touching the keys... Claudia finally had to put the computer away. Then Claudia took out index cards and mom grabbed them and said, "I'll help you." So Claudia gave her the cards and asked her to put them in a baggie. Mom kept dropping them on the floor. Finally, Claudia gave her an index card and a pen and mom said, "What do you want me to write?" Then, mom didn't want to write so Claudia told her to put the cards in the baggie and mom said, "No." It was frustrating for both of them!! Mom said she wanted to help, but couldn't and wouldn't help in the appropriate way. The walk in the wheelchair followed which was very rewarding for everyone.
Anthony, Con, Anthony Michael and Sammy saw mom today and they were sooooooo surprised!!! Claudia, Dad and Mom met them in the vestibule of the facility!!! Mom was in her wheelchair in the vestibule for the first time!! They were soooo happy mom was there and mom was thrilled in return --- both to see them and to be there. They all sat there and talked a bit and mom looked at all the people passing, asking who was who... They went back to mom's room then and talked and Anthony did some physical therapy with mom's legs. Mom said "Ow" a few times. They watched TV. Mom took maybe 2 tiny cat naps. Claudia had left by then. They tried to help mom sew on the sewing cards but mom needed a lot of help. Mom was more intent on taking apart the knot rather then lace the card. Many of the nurses came to see her and were happy to see her and mom was happy to see them too! Everyone is so pleased with her progress. Anthony had mom laughing and laughing as usual too!
Dad left for a while and then came back later on with Terry. They sat with mom and talked and watched TV. I am sure Terry probably did games and books on her NOOK too. They enjoy that. When I arrived, mom was just being put into bed and sleeping. I sat with her as she slept, Then I prayed over her, anointed her with oil and left.
"I can do all things through Christ Who strengthens me." Philippians 4:13
When Claudia came to start the day with mom, mom was being put into her wheelchair. Claudia put her hearing aids in and glasses on while her CNA combed her hair. The CNA told Claudia to take mom outside. Claudia tried to take her outside but the head of respiratory has to clear her first. So they didn't go outside but they were able to take mom for a ride through the facility!!!! This is a first!! Mom wasn't upset with not going outside; she said, "Whatever, I'll go outside tomorrow." They brought mom to the facility computer room and looked at mom's e-mail. Mom seemed to like that! Then, they watched Jean on youtube along with some episodes of MASH. Then dad and Claudia asked mom if she wanted to go for a ride and mom said "Sure, help me get up" and then grabbed the desk and tried to get up to walk!!! She can't walk yet though!! She isn't physically able to--but it's great that she wants to do this! Earlier in the day, Claudia tried to do pegs and the pegboard with mom but Claudia said mom wasn't having a cognitively favorable day. Mom didn't know what to do with the pegs at all. She appeared to be confused. When it was time to clean up, she put the pegs in correctly! Claudia took out the canister and the buttons. She asked mom if she wanted to do it and mom said "Yes, I want to." Mom put a few buttons in correctly but then began to knock them off the table (she did that with the pegs earlier too). Mom looked at magazines with Claudia next. At one point, Claudia was doing her schoolwork next to mom with her computer and mom kept grabbing the computer and touching the keys... Claudia finally had to put the computer away. Then Claudia took out index cards and mom grabbed them and said, "I'll help you." So Claudia gave her the cards and asked her to put them in a baggie. Mom kept dropping them on the floor. Finally, Claudia gave her an index card and a pen and mom said, "What do you want me to write?" Then, mom didn't want to write so Claudia told her to put the cards in the baggie and mom said, "No." It was frustrating for both of them!! Mom said she wanted to help, but couldn't and wouldn't help in the appropriate way. The walk in the wheelchair followed which was very rewarding for everyone.
Anthony, Con, Anthony Michael and Sammy saw mom today and they were sooooooo surprised!!! Claudia, Dad and Mom met them in the vestibule of the facility!!! Mom was in her wheelchair in the vestibule for the first time!! They were soooo happy mom was there and mom was thrilled in return --- both to see them and to be there. They all sat there and talked a bit and mom looked at all the people passing, asking who was who... They went back to mom's room then and talked and Anthony did some physical therapy with mom's legs. Mom said "Ow" a few times. They watched TV. Mom took maybe 2 tiny cat naps. Claudia had left by then. They tried to help mom sew on the sewing cards but mom needed a lot of help. Mom was more intent on taking apart the knot rather then lace the card. Many of the nurses came to see her and were happy to see her and mom was happy to see them too! Everyone is so pleased with her progress. Anthony had mom laughing and laughing as usual too!
Dad left for a while and then came back later on with Terry. They sat with mom and talked and watched TV. I am sure Terry probably did games and books on her NOOK too. They enjoy that. When I arrived, mom was just being put into bed and sleeping. I sat with her as she slept, Then I prayed over her, anointed her with oil and left.
"I can do all things through Christ Who strengthens me." Philippians 4:13
Mom Update, June 25, 2011, Saturday
Hi Everyone,
Mom’s update June 25th 2011
I started the day with mom and she was very sleepy. I put her hearing aids in and put her glasses on. She woke up for a few minutes but didn’t say much. I left while they put mom in her chair. Mom lost a considerable amount of weight so her clothes are too big. I had to buy her shirts and pants for PT. I came back and mom was out like a light. She woke for a moment and I asked her if she was tired and she said, “I need to sleep.”
Con, Anthony, Terry, and Samantha came next and said that mom was sleeping when they first got there but then she woke up. Once she was awake she was very talkative. Anthony sneezed at one point and mom said, “God Bless You.” They stayed with her all afternoon into the night and put her to bed. Mom was getting sleepy just before they left.
Peace and Love,
Claudia
Mom’s update June 25th 2011
I started the day with mom and she was very sleepy. I put her hearing aids in and put her glasses on. She woke up for a few minutes but didn’t say much. I left while they put mom in her chair. Mom lost a considerable amount of weight so her clothes are too big. I had to buy her shirts and pants for PT. I came back and mom was out like a light. She woke for a moment and I asked her if she was tired and she said, “I need to sleep.”
Con, Anthony, Terry, and Samantha came next and said that mom was sleeping when they first got there but then she woke up. Once she was awake she was very talkative. Anthony sneezed at one point and mom said, “God Bless You.” They stayed with her all afternoon into the night and put her to bed. Mom was getting sleepy just before they left.
Peace and Love,
Claudia
Mom Update, June 24, 2011, Friday
Mom's update, June 24th, 2011
Not much to write about today. Mom was very sleepy in the morning. She woke up only for a moment and then drifted off again. She did speak when she was awake. I set her up for the day and she fell asleep.
Anthony came to see mom and she was awake and happy to see him. She didn’t want to do anything. She just wanted to relax. She was reading a magazine. She didn’t want the TV on. She was taken to PT and they said she did well by standing in the stander. They said she wasn’t in to it today. The head of the therapy department said that he wants to try to get her to PT at 10 in the morning because he noticed she gets tired. Anth asked her how she did and she made a face like I hate this (PT).
She fell asleep.
I got there later in the day and she was sleeping. I tried to wake her up but she would only stay awake for a few minutes and then fall asleep. She had a very busy week standing in PT. I guess she needed to sleep. This has been the pattern since this all began. We get a few great days followed by sleepy days. I took out her hearing aids and took off her glasses and put her to bed.
Standing on the promises I cannot fall,
Listening every moment to the Spirit’s call
Resting in my Savior as my all in all,
Standing on the promises of God.
Peace and Love,
~Claudia
Not much to write about today. Mom was very sleepy in the morning. She woke up only for a moment and then drifted off again. She did speak when she was awake. I set her up for the day and she fell asleep.
Anthony came to see mom and she was awake and happy to see him. She didn’t want to do anything. She just wanted to relax. She was reading a magazine. She didn’t want the TV on. She was taken to PT and they said she did well by standing in the stander. They said she wasn’t in to it today. The head of the therapy department said that he wants to try to get her to PT at 10 in the morning because he noticed she gets tired. Anth asked her how she did and she made a face like I hate this (PT).
She fell asleep.
I got there later in the day and she was sleeping. I tried to wake her up but she would only stay awake for a few minutes and then fall asleep. She had a very busy week standing in PT. I guess she needed to sleep. This has been the pattern since this all began. We get a few great days followed by sleepy days. I took out her hearing aids and took off her glasses and put her to bed.
Standing on the promises I cannot fall,
Listening every moment to the Spirit’s call
Resting in my Savior as my all in all,
Standing on the promises of God.
Peace and Love,
~Claudia
Mom Update, June 23, 2011, Thursday
I started the day with mom. She was asleep when I arrived. i washed her face, combed her hair and put her hearing aids in her ears. She woke up and was happy to see me. I set her up for the day with a magazine on her lap desk and the TV on channel 7. I told her I had to drive out to Springs today and she made a face and said, "Wow!" I gave ehr a kiss and started my day.
Lenny and Kathy went to see mom and mom had a shower and mom went to PT. When Kathy got there Anthony, Anthony Michael, Sam, Pop and mom’s friends were there. Kathy was teasing her and kidding around and said, “Hey Mom, alright so ya want to do some work?” and mom said, “No! Stop it!”
Anthony came to see mom with Anthony Michael and Sam. She was in PT when they got there. She was wide-awake and happy to see her. She wouldn’t hold the cards right and kept spreading them out on the table. It held her attention. She tried to talk a lot but they couldn’t understand her.
She was standing in the standing table yesterday and today. She complained that her knee hurt and that it could be the way that the board leans on her artificial knee. Marty, Flo and Maureen came (mom’s friends) and mom spoke but it was hard for them to understand her. She spoke quickly and with tight lips. She isn’t moving her lips very much. She was trying to get in on the conversation. She hasn’t been repeating herself lately. Anthony Michael, Sam and Anthony played 31 the card game and she asked if she could shuffle the cards.
I got there later in the evening. Mom was in the wheel chair watching TV. I sat down next to her and told her about my day. She talked a lot, but it was hard to understand her. A few times I said to talk loud and she produced sound which made it easier to understand her. I then took out the pegs and rings and she put each ring on the pegs. After that we played Wii bowling. She watched the screen and tried to work the controller but couldn’t. I eventually had her hold my wrist and we worked the controller together. Next I put the headphones on her and we listened to music from her iPod. She seems to be intrigued by my blouses. The more ruffles the better. Tonight she kept touching my blouse and she said, “Beautiful.” I had to take my necklace off because she was so distracted by it she couldn’t concentrate on what we were doing. I showed her the “All About Me” book and she read the whole book. She laughed about the part where Kathy wrote about dad and how he likes to make piles of junk. She started to talk about Lenny when we came to that page but I couldn’t understand what she was saying. I told her about Ava moving to Brooklyn by Flatbush Avenue and she said, “My mother lived by Flatbush Avenue in Brooklyn.” I stayed until she was put into bed. I made sure she was tucked in and could see and hear the TV. I shut the lights and said a prayer. She said, “Go to sleep” to me.
Peace and Love,
~Claudia
Lenny and Kathy went to see mom and mom had a shower and mom went to PT. When Kathy got there Anthony, Anthony Michael, Sam, Pop and mom’s friends were there. Kathy was teasing her and kidding around and said, “Hey Mom, alright so ya want to do some work?” and mom said, “No! Stop it!”
Anthony came to see mom with Anthony Michael and Sam. She was in PT when they got there. She was wide-awake and happy to see her. She wouldn’t hold the cards right and kept spreading them out on the table. It held her attention. She tried to talk a lot but they couldn’t understand her.
She was standing in the standing table yesterday and today. She complained that her knee hurt and that it could be the way that the board leans on her artificial knee. Marty, Flo and Maureen came (mom’s friends) and mom spoke but it was hard for them to understand her. She spoke quickly and with tight lips. She isn’t moving her lips very much. She was trying to get in on the conversation. She hasn’t been repeating herself lately. Anthony Michael, Sam and Anthony played 31 the card game and she asked if she could shuffle the cards.
I got there later in the evening. Mom was in the wheel chair watching TV. I sat down next to her and told her about my day. She talked a lot, but it was hard to understand her. A few times I said to talk loud and she produced sound which made it easier to understand her. I then took out the pegs and rings and she put each ring on the pegs. After that we played Wii bowling. She watched the screen and tried to work the controller but couldn’t. I eventually had her hold my wrist and we worked the controller together. Next I put the headphones on her and we listened to music from her iPod. She seems to be intrigued by my blouses. The more ruffles the better. Tonight she kept touching my blouse and she said, “Beautiful.” I had to take my necklace off because she was so distracted by it she couldn’t concentrate on what we were doing. I showed her the “All About Me” book and she read the whole book. She laughed about the part where Kathy wrote about dad and how he likes to make piles of junk. She started to talk about Lenny when we came to that page but I couldn’t understand what she was saying. I told her about Ava moving to Brooklyn by Flatbush Avenue and she said, “My mother lived by Flatbush Avenue in Brooklyn.” I stayed until she was put into bed. I made sure she was tucked in and could see and hear the TV. I shut the lights and said a prayer. She said, “Go to sleep” to me.
Peace and Love,
~Claudia
Wednesday, June 22, 2011
Mom Update, June 22, 2011, Wednesday
Claudia began the day with mom and she was wide awake, alert and talking. Mom was very upset that she can’t go to the bathroom to do her business. Mom told Claudia that she was in pain and pointed to the area. Claudia asked if her neck hurt, mom said no, she asked if her head hurt, mom said, no. then, mom showed Claudia where it hurt on Claudia so going by the spot, Claudia said, “your clavicle hurts?” Mom said,”Yes, I guess so that’s what you call it.” Claudia asked if mom wanted Tylenol and mom asked why so Claudia said for the pain, so mom made a face and said, “OK.” Mom was scrunched down in the bed and asked Claudia to sit her up because, “I’m leaning.” Claudia told mom she has a routine that she does with mom each morning so that Claudia doesn’t forget to do anything. Mom was amazed by this and questioned Claudia about the routine. Mom also told Claudia that her head hurt as well, so Claudia pointed to the area of the surgery and mom said, “Yes.” Claudia put mom’s bed down flat to straighten mom and mom said, “I’m afraid” because the bed was flat. Claudia asked her why and mom said, “I don’t like being down.” So Claudia reassured her and straightened her. Mom told Claudia how to lift the bed and to what point. Mom told one of the aides to “Shut up” but obviously didn’t know what she was saying because mom got very upset when she heard that she said that to the CNA and said, “I would never say that!” Mom was able to tell the respiratory person that she needed to be cleaned around the trach and stoma and that she was all wet. Mom’s neck patch for coughing was off. The nurse came in and replaced it but it takes almost an hour to kick in and mom to stop coughing. The respiratory person came back in and mom asked who the person was and told Claudia to tell the person to change her clothes. At one point, mom tried to blow on her hand but couldn’t feel her breath so she became very upset. Claudia had to explain to mom that she is breathing through her stoma/trach collar not her mouth. Mom understood and then relaxed. She told the respiratory person to stay with her because she was coughing so much. Mom also read everyone’s badges today. The head of respiratory asked how she is doing with physical therapy and mom said, “I guess I am doing OK.” The therapist gets a kick out of mom and enjoys her a lot. This head person told us that mom’s head and soft spot has to be handled carefully. There is no skull at the site of the shunt. That piece of the skull is in mom’s abdomen now for safe keeping.
I talked to mom a lot this morning. She said she dreams. Mom said that she dreamt about her bedroom at home last night. She also said she felt nervous this morning. I asked about what and then we were interrupted. We talked about how she had been sick for a while and now she is getting better. We talked about last Memorial Day (2010), I asked her if she remembered going upstate with dad and us and then picking up aunt sophie…she said, "Yes, sort of." I am trying to reconstruct what happened to her slowly. My reason for doing this is to follow her lead but to also help her to understand the tasks before her and their importance. Also, mom is confused a lot about the hype around her regarding simple things she does. She also becomes annoyed with our attempts to help her as well. She doesn't understand that there is much to relearn. I am not saying that we want to overwhelm her or to depress or discourage her at all. But we do know that in order for mom to progress, she needs to understand to some degree what happened to her and why. Each day, mom is more and more aware of her surroundings, it seems that it will only be a matter of time now before she asks what happened and wonders when she will be going home. I told mom Maureen, her friend, emailed me about her and mom said “Awww…” in a grateful voice and facial expression. I also told her that her friends come to see her often and that Maureen comes once a week to see her. Mom almost cried at that and said, "She doesn't have to do that." This comment is vintage mom! Mom was surprised and happy to see me. She said she knows and remembers me visiting her every day. She was flicking through her magazine with her mitts on her hands as we talked at first. The trach collar bothers her and she scratches underneath it and also moves it to a new, more comfortable position sometimes.
Mom was very afraid to be in the hoyer (the lift machine that puts the patient in a sling and swings the patient up out of bed suspended in the air and then down into a chair and vice versa) this morning. She is suddenly aware of things as though she is experiencing them for the first time. As mom becomes more aware each day, she needs to understand, to some degree, what happened to her. This is important because mom is now able to become an active participant in her own recovery. Over the past year, we have been imposing therapies on mom…she was not an active participant. The therapies were important but mom didn't and couldn't really participate consistently in them. Now, mom may not only participate but also perhaps direct her therapies according to her own individual preferences. The lens on mom's recovery shifts yet again now...we now have an entire psychological piece to mom to deal with that wasn't there before. A new level of consciousness and awareness.
The physical therapist works with mom every day. The therapist comes sometimes twice a day to be sure that mom is awake and ready to work. Had her at the standing table last week already. Mom stood for 5 minutes twice. The therapist tried the band under mom's feet but mom did not do great with that at all. When she was asked to move her legs she did not do great either. This new physical therapist is great and won’t give up.
Mom went to physical therapy but Anthony couldn’t go with her. When he returned, mom was in her wheelchair reading a magazine. He told her Sam went on a roller coaster today and mom said, “I hope she’ll be OK!” they talked a lot and held hands. She read a lot and didn’t want to watch TV even though Anthony asked her what she wanted to watch (mom said, “Put on what you want”).
The speech therapist continues to come see mom to give her snack foods. However, mom aspirated on liquid that was honey consistency yesterday so no more liquid for a while. Mom had pudding today and appears to have aspirated as well so the therapist is going to discontinue oral feeding for a while.
When I came back to see mom this afternoon, I ran into the recreation therapist who was thrilled at mom’s progress. Mom went to the recreation room and the therapist read the newspaper to the residents among other things. Dad went with mom there. The therapist said that mom winked at her and smiled and that it made the therapist’s day. When I saw mom, she was watching TV with dad and reading a magazine. She was engrossed in the magazine. I said hi and she smiled. I asked her what she wanted to do and she made an annoyed face and gesture and said, “Leave me alone for a few seconds and let me sit!” So….we sat and talked and watched TV for a while. After a bit, I took out the white board and markers. Mom made a circular motion and also traced a huge letter ‘D’ with her fingers but not with the markers. We did a counting sheet (one-to-one correspondence) involving the numbers 1-5. There were rows of objects to count along with a coinciding number to match it to. Mom named the numbers 1,2, and 5 but didn’t know the number 4 at all and was astonished when I told her the name of the number. She also said that ‘3’ was ‘2.’ She really couldn’t complete the sheet alone or even with a lot of assistance. She counted some of the objects with me and found most of the numbers but couldn’t draw the line from a number to the objects. I tried a block game where you have to make words using the letters on the blocks---she wasn’t interested. She really just wanted to hold dad’s hand and watch TV and flip through the magazine as she read it. She reads really well. She talked a lot though it wasn’t always easy to understand what she was saying. At one point, dad changed the channel and mom complained. It seems that as she gets tired, she becomes confused. Mom complained of a head ache again late in the afternoon.
Anthony Michael and Con came to see mom tonight and dad and I left. They sang songs and watched TV. Mom said a lot to Con but Con and Anthony Michael couldn’t understand a lot of what mom said. Mom was very alert. After mom was put to bed, Con got mom ready for bed and put the timer on the TV. Anthony Michael and Con prayed over mom and left.
"He Who began a good work will be faithful to complete it." Philippians 1:6
I talked to mom a lot this morning. She said she dreams. Mom said that she dreamt about her bedroom at home last night. She also said she felt nervous this morning. I asked about what and then we were interrupted. We talked about how she had been sick for a while and now she is getting better. We talked about last Memorial Day (2010), I asked her if she remembered going upstate with dad and us and then picking up aunt sophie…she said, "Yes, sort of." I am trying to reconstruct what happened to her slowly. My reason for doing this is to follow her lead but to also help her to understand the tasks before her and their importance. Also, mom is confused a lot about the hype around her regarding simple things she does. She also becomes annoyed with our attempts to help her as well. She doesn't understand that there is much to relearn. I am not saying that we want to overwhelm her or to depress or discourage her at all. But we do know that in order for mom to progress, she needs to understand to some degree what happened to her and why. Each day, mom is more and more aware of her surroundings, it seems that it will only be a matter of time now before she asks what happened and wonders when she will be going home. I told mom Maureen, her friend, emailed me about her and mom said “Awww…” in a grateful voice and facial expression. I also told her that her friends come to see her often and that Maureen comes once a week to see her. Mom almost cried at that and said, "She doesn't have to do that." This comment is vintage mom! Mom was surprised and happy to see me. She said she knows and remembers me visiting her every day. She was flicking through her magazine with her mitts on her hands as we talked at first. The trach collar bothers her and she scratches underneath it and also moves it to a new, more comfortable position sometimes.
Mom was very afraid to be in the hoyer (the lift machine that puts the patient in a sling and swings the patient up out of bed suspended in the air and then down into a chair and vice versa) this morning. She is suddenly aware of things as though she is experiencing them for the first time. As mom becomes more aware each day, she needs to understand, to some degree, what happened to her. This is important because mom is now able to become an active participant in her own recovery. Over the past year, we have been imposing therapies on mom…she was not an active participant. The therapies were important but mom didn't and couldn't really participate consistently in them. Now, mom may not only participate but also perhaps direct her therapies according to her own individual preferences. The lens on mom's recovery shifts yet again now...we now have an entire psychological piece to mom to deal with that wasn't there before. A new level of consciousness and awareness.
The physical therapist works with mom every day. The therapist comes sometimes twice a day to be sure that mom is awake and ready to work. Had her at the standing table last week already. Mom stood for 5 minutes twice. The therapist tried the band under mom's feet but mom did not do great with that at all. When she was asked to move her legs she did not do great either. This new physical therapist is great and won’t give up.
Mom went to physical therapy but Anthony couldn’t go with her. When he returned, mom was in her wheelchair reading a magazine. He told her Sam went on a roller coaster today and mom said, “I hope she’ll be OK!” they talked a lot and held hands. She read a lot and didn’t want to watch TV even though Anthony asked her what she wanted to watch (mom said, “Put on what you want”).
The speech therapist continues to come see mom to give her snack foods. However, mom aspirated on liquid that was honey consistency yesterday so no more liquid for a while. Mom had pudding today and appears to have aspirated as well so the therapist is going to discontinue oral feeding for a while.
When I came back to see mom this afternoon, I ran into the recreation therapist who was thrilled at mom’s progress. Mom went to the recreation room and the therapist read the newspaper to the residents among other things. Dad went with mom there. The therapist said that mom winked at her and smiled and that it made the therapist’s day. When I saw mom, she was watching TV with dad and reading a magazine. She was engrossed in the magazine. I said hi and she smiled. I asked her what she wanted to do and she made an annoyed face and gesture and said, “Leave me alone for a few seconds and let me sit!” So….we sat and talked and watched TV for a while. After a bit, I took out the white board and markers. Mom made a circular motion and also traced a huge letter ‘D’ with her fingers but not with the markers. We did a counting sheet (one-to-one correspondence) involving the numbers 1-5. There were rows of objects to count along with a coinciding number to match it to. Mom named the numbers 1,2, and 5 but didn’t know the number 4 at all and was astonished when I told her the name of the number. She also said that ‘3’ was ‘2.’ She really couldn’t complete the sheet alone or even with a lot of assistance. She counted some of the objects with me and found most of the numbers but couldn’t draw the line from a number to the objects. I tried a block game where you have to make words using the letters on the blocks---she wasn’t interested. She really just wanted to hold dad’s hand and watch TV and flip through the magazine as she read it. She reads really well. She talked a lot though it wasn’t always easy to understand what she was saying. At one point, dad changed the channel and mom complained. It seems that as she gets tired, she becomes confused. Mom complained of a head ache again late in the afternoon.
Anthony Michael and Con came to see mom tonight and dad and I left. They sang songs and watched TV. Mom said a lot to Con but Con and Anthony Michael couldn’t understand a lot of what mom said. Mom was very alert. After mom was put to bed, Con got mom ready for bed and put the timer on the TV. Anthony Michael and Con prayed over mom and left.
"He Who began a good work will be faithful to complete it." Philippians 1:6
Tuesday, June 21, 2011
Mom Update, June 21, 2011, Tuesday
New room. 166B.
When Claudia began the day with mom early this morning, mom was awake and alert (the aides told us she was awake all night last night!!!...Mom slept the entire day after Claudia's visit!!). Claudia did the calendar with mom. Claudia asked mom what day it is today and mom said, "Friday." Claudia said, "Well, that's at least the name of a day! You didn't say a color or animal as your response, but it isn't Friday. It's Tuesday." Mom wanted to circle the day and year and number independently but she couldn't and needed hand over hand assistance. Next, they did the oral motor apps on the IPAD. Mom was able to imitate all that Claudia presented so Claudia encouraged mom to practice the facial positions alone in order to help move her mouth better. Claudia explained to mom that, when mom talks now, mom uses a small mouth that doesn't move much and therefore, makes it harder to understand what she is saying or to lipread.
We had to move mom's room for the 5th time!!! Ugh...but wherever God wants us, that's where we go as willingly as possible. Ava, Anthony Michael and Lenny all met Pop (Dad) at mom's room and the kids packed up mom's room all alone!! They also helped to set up mom's room again. Mom saw them when they tried to wake her and said, "Hi Sweetheart" then went back to sleep.
Ava and Lenny reported that mom still has a slow swallow according to the speech therapist, so mom will just be eating snack foods like applesauce and pudding but no liquids yet. Eating will be a slow reintroduction. I want to speak to the dietician about introducing healthier choice foods---low carb, not too sugary...because the last time mom began to eat, some of the foods seemed to affect her energy level greatly in a negative way.
The CNAs and nurses were all upset and angry that the facility made us and mom leave the private room she was in and move yet again. They all advocated for us and mom...saying that our family is large and active and the private room is the best one for us. Some of the CNAs were even scolded for advocating and talking to us about how they felt we were being treated. They all told us to fight harder to stay in the private room (even though we did all we could already). They are very protective of mom and us. So many of the CNAs (especially) and some of the nurses really love mom so much.
Mom does not appear to have any recollection that she missed a year of her life. Exactly a year ago on June 1 (2010), she had the burst aneurysm and stroke and now, a full year later, she had the shunt put in and had an "awakening." So for mom, the sequence in time is exactly the same with the exception that a whole year has passed. Sequentially, she went away upstate the last weekend in May (2010) and then all this happened, but now (2011), she wakes up to what she must think is only a week or two later--but it is actually a year later. We are planning to gradually follow her lead but also introduce the idea to her that time has passed and that she is so much better than she was. This will hopefully help her to fight or continue to fight to get well. With every celebration of progress, mom doesn't understand what the hype is all about.
Also, any visitors can now be NORMAL around mom. Don't talk around her, talk to her. She is fully present and able, albeit slower to process at times. Don't talk baby talk or in an exaggerated fashion. Speak normally...talk about normal topics just like before.
Mom speaks a lot when she is awake and is very aware of what is going on around her. She hasn't asked us what happened to her yet or why she is in the facility. She hasn't asked to go home yet either...but I feel that is soon coming.
After we set up her room, Anthony Michael and I sat with mom alone. Anthony Michael held her in a hug and rested his head on her shoulder. When mom finally woke up, she called him her "Sweetheart" (her special nickname for Anthony Michael) and kissed him. Dad had left for dinner and when he returned, he and Anthony sat and watched TV with mom until John came to see her. Dad said that mom was very talkative and correcting their incorrect history facts as they all watched the History Channel together!! Mom always wanted to become a teacher and never did...but she was our teacher, certainly.
One of mom's nurses, who we love, is an EMT and was a first responder at the shooting at that drug store on Long Island. Please pray for this nurse because it was an awful experience.
When John and Ava came to see mom tonight, she was awake and ready for action!!
love one another deeply, from the heart. 1 Peter 1:22
When Claudia began the day with mom early this morning, mom was awake and alert (the aides told us she was awake all night last night!!!...Mom slept the entire day after Claudia's visit!!). Claudia did the calendar with mom. Claudia asked mom what day it is today and mom said, "Friday." Claudia said, "Well, that's at least the name of a day! You didn't say a color or animal as your response, but it isn't Friday. It's Tuesday." Mom wanted to circle the day and year and number independently but she couldn't and needed hand over hand assistance. Next, they did the oral motor apps on the IPAD. Mom was able to imitate all that Claudia presented so Claudia encouraged mom to practice the facial positions alone in order to help move her mouth better. Claudia explained to mom that, when mom talks now, mom uses a small mouth that doesn't move much and therefore, makes it harder to understand what she is saying or to lipread.
We had to move mom's room for the 5th time!!! Ugh...but wherever God wants us, that's where we go as willingly as possible. Ava, Anthony Michael and Lenny all met Pop (Dad) at mom's room and the kids packed up mom's room all alone!! They also helped to set up mom's room again. Mom saw them when they tried to wake her and said, "Hi Sweetheart" then went back to sleep.
Ava and Lenny reported that mom still has a slow swallow according to the speech therapist, so mom will just be eating snack foods like applesauce and pudding but no liquids yet. Eating will be a slow reintroduction. I want to speak to the dietician about introducing healthier choice foods---low carb, not too sugary...because the last time mom began to eat, some of the foods seemed to affect her energy level greatly in a negative way.
The CNAs and nurses were all upset and angry that the facility made us and mom leave the private room she was in and move yet again. They all advocated for us and mom...saying that our family is large and active and the private room is the best one for us. Some of the CNAs were even scolded for advocating and talking to us about how they felt we were being treated. They all told us to fight harder to stay in the private room (even though we did all we could already). They are very protective of mom and us. So many of the CNAs (especially) and some of the nurses really love mom so much.
Mom does not appear to have any recollection that she missed a year of her life. Exactly a year ago on June 1 (2010), she had the burst aneurysm and stroke and now, a full year later, she had the shunt put in and had an "awakening." So for mom, the sequence in time is exactly the same with the exception that a whole year has passed. Sequentially, she went away upstate the last weekend in May (2010) and then all this happened, but now (2011), she wakes up to what she must think is only a week or two later--but it is actually a year later. We are planning to gradually follow her lead but also introduce the idea to her that time has passed and that she is so much better than she was. This will hopefully help her to fight or continue to fight to get well. With every celebration of progress, mom doesn't understand what the hype is all about.
Also, any visitors can now be NORMAL around mom. Don't talk around her, talk to her. She is fully present and able, albeit slower to process at times. Don't talk baby talk or in an exaggerated fashion. Speak normally...talk about normal topics just like before.
Mom speaks a lot when she is awake and is very aware of what is going on around her. She hasn't asked us what happened to her yet or why she is in the facility. She hasn't asked to go home yet either...but I feel that is soon coming.
After we set up her room, Anthony Michael and I sat with mom alone. Anthony Michael held her in a hug and rested his head on her shoulder. When mom finally woke up, she called him her "Sweetheart" (her special nickname for Anthony Michael) and kissed him. Dad had left for dinner and when he returned, he and Anthony sat and watched TV with mom until John came to see her. Dad said that mom was very talkative and correcting their incorrect history facts as they all watched the History Channel together!! Mom always wanted to become a teacher and never did...but she was our teacher, certainly.
One of mom's nurses, who we love, is an EMT and was a first responder at the shooting at that drug store on Long Island. Please pray for this nurse because it was an awful experience.
When John and Ava came to see mom tonight, she was awake and ready for action!!
love one another deeply, from the heart. 1 Peter 1:22
Monday, June 20, 2011
Mom Update, June 20. 2011, Monday
Hi everyone,
I started the day with mom and she was out cold! I washed her face and put her hearing aids in and set her up for her day but she would not respond. She is still on the trach collar which means she is off the vent still.
Jean, Ava and Michael (my nephew) came to see mom later in the morning. Mom was up by then and she was happy to see them. When she saw Jean and Ava she smiled but when she saw Michael her eyes widened and she saw "Oh!" THey played catch with her and mom was able to catch and throw the ball. Ava asked her if she remembered how she use to swing on the swing in her yard and sing. Mom said yes. Then Ava asked mom what song she use to sing and mom said, "I don't remember." Ava said, "Do you want me to tell you?" and mom said, "No, I want to think." So Ava said it was from the show Annie and mom said, "The Sun will Come Out Tomorrow." Ava was so excited!!! Ava started to talk about Brooklyn and mom said, "No." She really doesn't want to hear that she is moving. WHen they left they all went up to give mom a kiss and she said to Jean and Ava I Love You and when she kissed Michael she said, "I love you - behave" as she pointed her finger at him. He laughed! Dad came and said mom was still up and they talked and watched a movie.
I wasn't aware that Suzanne and Rita came yesterday (father's day). I heard that mom was happy to see them. Kathy came home form upstate and mom seemed to be annoyed with her for some reason. Kathy tried to touch her hair and mom told her to stop it. Mom said Hi when Kathy walked in. Kathy asked her what she was doing and she said, "Watching Shawshank Redemption with dad." Kathy tried to do the sewing cards with mom and she argued that she didn't want to do them but she then tried to sew 3 cards together and then tried to wind the lace around them to attach the cards. Kathy said to mom, "what are you thinking?" and mom said, "I'm thinking about who's coming tomorrow." The speech therapist came in to feed mom and mom told her, "Just a minute." She also put her hand up to tell the therapist not to give her more juice.
I came by at the end of the day and said to mom, "Who came to see you today?" and she said, "Jean and Ava." I then said, "And Michael..." and she said "Hopper" which is his last name! It is amazing what she remembers. I played the dot game where you connect the dots to form boxes and then you put your initial in the box. She had a hard time isolating a finger to touch the ipad. She seemed interested and when I asked if she wanted to play she said yes.
We were told today that we have to move mom's room. UGH! we just got settled. I knew the private room was too good to be true.
Terry broke her foot tonight, so please pray for a fast and painless recovery.
Peace and Love
~Claud
I started the day with mom and she was out cold! I washed her face and put her hearing aids in and set her up for her day but she would not respond. She is still on the trach collar which means she is off the vent still.
Jean, Ava and Michael (my nephew) came to see mom later in the morning. Mom was up by then and she was happy to see them. When she saw Jean and Ava she smiled but when she saw Michael her eyes widened and she saw "Oh!" THey played catch with her and mom was able to catch and throw the ball. Ava asked her if she remembered how she use to swing on the swing in her yard and sing. Mom said yes. Then Ava asked mom what song she use to sing and mom said, "I don't remember." Ava said, "Do you want me to tell you?" and mom said, "No, I want to think." So Ava said it was from the show Annie and mom said, "The Sun will Come Out Tomorrow." Ava was so excited!!! Ava started to talk about Brooklyn and mom said, "No." She really doesn't want to hear that she is moving. WHen they left they all went up to give mom a kiss and she said to Jean and Ava I Love You and when she kissed Michael she said, "I love you - behave" as she pointed her finger at him. He laughed! Dad came and said mom was still up and they talked and watched a movie.
I wasn't aware that Suzanne and Rita came yesterday (father's day). I heard that mom was happy to see them. Kathy came home form upstate and mom seemed to be annoyed with her for some reason. Kathy tried to touch her hair and mom told her to stop it. Mom said Hi when Kathy walked in. Kathy asked her what she was doing and she said, "Watching Shawshank Redemption with dad." Kathy tried to do the sewing cards with mom and she argued that she didn't want to do them but she then tried to sew 3 cards together and then tried to wind the lace around them to attach the cards. Kathy said to mom, "what are you thinking?" and mom said, "I'm thinking about who's coming tomorrow." The speech therapist came in to feed mom and mom told her, "Just a minute." She also put her hand up to tell the therapist not to give her more juice.
I came by at the end of the day and said to mom, "Who came to see you today?" and she said, "Jean and Ava." I then said, "And Michael..." and she said "Hopper" which is his last name! It is amazing what she remembers. I played the dot game where you connect the dots to form boxes and then you put your initial in the box. She had a hard time isolating a finger to touch the ipad. She seemed interested and when I asked if she wanted to play she said yes.
We were told today that we have to move mom's room. UGH! we just got settled. I knew the private room was too good to be true.
Terry broke her foot tonight, so please pray for a fast and painless recovery.
Peace and Love
~Claud
Mom Update, June 19, 2011, Sunday
Hi everyone,
Mom update June 19th, 2011 (Father’s Day)
Happy Father’s Day to all. Mom was sound asleep when I first came in. I put her hearing aids in and washed her face but she didn’t wake up. Anthony, Con, Anthony and Sam came soon after. She stayed asleep even after we all sang the song “Good Morning” from Singing in the Rain. She coughed a lot and that finally woke her up. She was happy to see us all. She said, “Looks old” to Sam when she saw her.
Anthony ask for a hug and she lifted both arms and hugged Anthony and then took his head in her hands and gave him a kiss unprompted.
I made mom a big poster of money. It has a large penny, nickel, dime and quarter with the names and denominations velcroed on. Her eyes widened when she saw it and took off the penny and when asked said, “Penny.” We all did a crossword puzzle with her and she was able to get many of the clues.
I made an activity with four colored pegs and corresponding colored rings that go on each peg. Mom did the activity hand over hand and we asked her what each color was. She was able to label yellow and green independently but needed a prompt of the initial consonant to get “red” and a prompt of “pur” for purple but I did have to finally tell her purple. She complained that her head hurt while doing the task so we stopped after the task (the nurse came in and gave her Tylenol) and put the Mets on.
Anthony asked mom if she was comfortable and if she needed to be fixed so she would sit up more. Mom grabbed the lap desk and pulled herself up. Anthony told Dad that he has to say to mom, “I need a hug” and she will give you a hug. Dad came in the room after she was placed in the chair and said, “I need a hug” and mom raised her arms and Dad got a hug and then she gave him a kiss. Sam showed mom the Mets Book I made her and she asked mom who is this and mom said, “David Wright.”
Kathy called and mom said, “I want to hold it.” She held the phone and Kathy said, “I am upstate” and mom said, “How is it upstate?” Kathy said remember the trailer, the new trailer, that’s where I am. Kathy said how are you and what are you doing? Mom said, “I am doing things.” Kathy asked who came to see you today and she said, “Claudia” (I was sitting right there for her to say my name). Kathy said, “When you see dad say happy father’s day and mom said, “OK Kathy.”
Ava, Jean and John came to see mom. Ava told her that she is moving to Brooklyn and mom shook her head no. She kept talking about it and mom said, “I don’t want to hear it.” Her nurse from the other side (Mom was in the other vent wing on the other side of the building hallway when she left for the hospital) came in to say hello and mom ‘s eyes lit up and she smiled. He said, “Nonny! Hi! I use to take care of you do you remember me?” and mom said, “Sure.” Jean said he is going to a Mets Yankee game in July to watch the Yankees beat the Mets and mom said emphatically, “No.”
Terry came just as we were leaving to take dad out for father’s day dinner. Terry stayed with mom and she was up almost the whole time. She took a little nap at one point. Terry showed mom the Nook Color and they played a piggie game. Terry also watched the Mets lose (sorry Mets fans!) and then put on the food network.
Terry and dad put mom to bed, said their prayers and left.
What a great Father’s Day!
“Abba, my father, all things are possible unto thee.”
Peace and Love to all…
~Claud
Mom update June 19th, 2011 (Father’s Day)
Happy Father’s Day to all. Mom was sound asleep when I first came in. I put her hearing aids in and washed her face but she didn’t wake up. Anthony, Con, Anthony and Sam came soon after. She stayed asleep even after we all sang the song “Good Morning” from Singing in the Rain. She coughed a lot and that finally woke her up. She was happy to see us all. She said, “Looks old” to Sam when she saw her.
Anthony ask for a hug and she lifted both arms and hugged Anthony and then took his head in her hands and gave him a kiss unprompted.
I made mom a big poster of money. It has a large penny, nickel, dime and quarter with the names and denominations velcroed on. Her eyes widened when she saw it and took off the penny and when asked said, “Penny.” We all did a crossword puzzle with her and she was able to get many of the clues.
I made an activity with four colored pegs and corresponding colored rings that go on each peg. Mom did the activity hand over hand and we asked her what each color was. She was able to label yellow and green independently but needed a prompt of the initial consonant to get “red” and a prompt of “pur” for purple but I did have to finally tell her purple. She complained that her head hurt while doing the task so we stopped after the task (the nurse came in and gave her Tylenol) and put the Mets on.
Anthony asked mom if she was comfortable and if she needed to be fixed so she would sit up more. Mom grabbed the lap desk and pulled herself up. Anthony told Dad that he has to say to mom, “I need a hug” and she will give you a hug. Dad came in the room after she was placed in the chair and said, “I need a hug” and mom raised her arms and Dad got a hug and then she gave him a kiss. Sam showed mom the Mets Book I made her and she asked mom who is this and mom said, “David Wright.”
Kathy called and mom said, “I want to hold it.” She held the phone and Kathy said, “I am upstate” and mom said, “How is it upstate?” Kathy said remember the trailer, the new trailer, that’s where I am. Kathy said how are you and what are you doing? Mom said, “I am doing things.” Kathy asked who came to see you today and she said, “Claudia” (I was sitting right there for her to say my name). Kathy said, “When you see dad say happy father’s day and mom said, “OK Kathy.”
Ava, Jean and John came to see mom. Ava told her that she is moving to Brooklyn and mom shook her head no. She kept talking about it and mom said, “I don’t want to hear it.” Her nurse from the other side (Mom was in the other vent wing on the other side of the building hallway when she left for the hospital) came in to say hello and mom ‘s eyes lit up and she smiled. He said, “Nonny! Hi! I use to take care of you do you remember me?” and mom said, “Sure.” Jean said he is going to a Mets Yankee game in July to watch the Yankees beat the Mets and mom said emphatically, “No.”
Terry came just as we were leaving to take dad out for father’s day dinner. Terry stayed with mom and she was up almost the whole time. She took a little nap at one point. Terry showed mom the Nook Color and they played a piggie game. Terry also watched the Mets lose (sorry Mets fans!) and then put on the food network.
Terry and dad put mom to bed, said their prayers and left.
What a great Father’s Day!
“Abba, my father, all things are possible unto thee.”
Peace and Love to all…
~Claud
Mom Update, June 18, 2011, Saturday
Hi Everyone,
Sorry this didn't go through last night, I guess I shut down before it was sent.
Mom had a great morning. She was up when I got there. She was very talkative. I started to get her ready and then it was time for her shower. When she was done form her shower she was still awake and alert. I did some number concepts with her since this seems to be an area where she has the most difficulty. We cut out "piglet" counters and placed them on a work sheet according to the corresponding number. She laughed when she saw the pigs. I asked her if she still liked pigs and she made a face like yes how cute. She was so intent on cutting out each counter. We did one more number sheet together. I then gave her the buttons and container but she had a difficult time figuring out how to do it. She worked it out and eventually put every button in the container. Next we did the sewing card. I poked the lace through the card and had her pull the cord through with a big arm motion. I explained to her everything we were doing and why and she was more apt to participate. We also did writing with the wipe off board. I drew the letter A over and over with her, then she traced the A. I cleaned off the board and then she made an A all by herself! the funny thing was that she didn't make it the way we were practicing. I then placed a bolt in her left hand and handed her a nut and she placed it on and then turned the nut all by herself. Dad was there to see her with the nuts and bolts.
I left and dad stayed with her. THey watched TV and held hands. She stayed awake with him for a while. Terry came and said that mom fell asleep and stayed asleep for most of her visit. Dad and Terry put mom to bed for the night.
Peace and Love,
~Claud
Sorry this didn't go through last night, I guess I shut down before it was sent.
Mom had a great morning. She was up when I got there. She was very talkative. I started to get her ready and then it was time for her shower. When she was done form her shower she was still awake and alert. I did some number concepts with her since this seems to be an area where she has the most difficulty. We cut out "piglet" counters and placed them on a work sheet according to the corresponding number. She laughed when she saw the pigs. I asked her if she still liked pigs and she made a face like yes how cute. She was so intent on cutting out each counter. We did one more number sheet together. I then gave her the buttons and container but she had a difficult time figuring out how to do it. She worked it out and eventually put every button in the container. Next we did the sewing card. I poked the lace through the card and had her pull the cord through with a big arm motion. I explained to her everything we were doing and why and she was more apt to participate. We also did writing with the wipe off board. I drew the letter A over and over with her, then she traced the A. I cleaned off the board and then she made an A all by herself! the funny thing was that she didn't make it the way we were practicing. I then placed a bolt in her left hand and handed her a nut and she placed it on and then turned the nut all by herself. Dad was there to see her with the nuts and bolts.
I left and dad stayed with her. THey watched TV and held hands. She stayed awake with him for a while. Terry came and said that mom fell asleep and stayed asleep for most of her visit. Dad and Terry put mom to bed for the night.
Peace and Love,
~Claud
Mom Update, June 17, 2011, Friday
Mom started her day with Ava and Jean. Ava said mom was very sleepy and refused to open her eyes. Ava put her hearing aids in and put her glasses on. She also did PT with Nonny. Ava kept trying to open her eyes and she squeezed them shut. Ava told her she was "playing hookie from work". THis is something my mom would say to Ava when she was little.
Anthony saw mom in the morning and she was sleepy. Mom woke up to work with the speech therapist. She ate chocolate pudding. Anthony did PT and range of motion exercises. Then she went to PT in the PT room. The PT also did range of motion and mom fell asleep during therapy. When she got back to the room she stayed awake and she and dad watched TV together. She was put back in bed and then fell asleep. She stayed asleep. Dad kissed mom, said his prayers and left.
(Isaiah 41:10) Don’t you be afraid, for I am with you. Don’t be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness.
Anthony saw mom in the morning and she was sleepy. Mom woke up to work with the speech therapist. She ate chocolate pudding. Anthony did PT and range of motion exercises. Then she went to PT in the PT room. The PT also did range of motion and mom fell asleep during therapy. When she got back to the room she stayed awake and she and dad watched TV together. She was put back in bed and then fell asleep. She stayed asleep. Dad kissed mom, said his prayers and left.
(Isaiah 41:10) Don’t you be afraid, for I am with you. Don’t be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness.
Mom Update, June 16, 2011, Thursday
When I arrived to start the day with mom this morning, there were nurses and CNAs all around and in her room. One of them shouted to me, “Wait til you see your mom!! She is talking up a storm!” Sure enough, the CNAs were cleaning mom and primping her (putting on her lipstick and blush) and they and mom were all talking to each other. They were laughing at the comments mom was making. I came in and mom just stared at me. Not too happy to see me! But then, I represent work. Haha! One nurse said that as she left to go home last night, she did one last round and when she came to mom, mom opened her eyes and said, “Hey, where is everybody?” The nurse told her we all were with mom all day and that now we all went home.
I spoke to the building administrator who told me that everyone is so thrilled to have mom back and came to see mom later in the day. I learned that some hospitals will not take a long term patient for care if the hospital finds out that the patient does not have a bed hold at the facility from which he/she came. This is because it could mean that the patient may get “stuck” in the hospital longer than needed if no beds exist. Scary system we have!!
Mom greeted every person who came to her room today. She also talked to everyone.
I spoke to the head of respiratory who was amazed at the results of the shunt. The respiratory therapist asked about mom’s CPAP machine that mom used to use at home and also asked about what pressure setting the machine is on so that they will know how much pressure mom will need approximately when mom gets off the trach totally!! The therapist said that mom will be monitored for a while on the collarless trach (this is not the vent---there isn’t even a vent in the room) and then the trach itself will come out. At that time, mom will remain on the wing she is on until the stoma (the hole in her throat closes) and then she is good to go!! The respiratory therapist (the head person) also asked about what type of shunt mom has. I have to get the information: What type of shunt, the name of it, whether it ever gets replaced, if she needs evaluation… The head of respiratory said that great progress is expected for mom. The head of respiratory asked mom how she feels and mom asked, “How am I supposed to feel?”
The physical therapist came to see mom too. This is a new person to mom. Mom was assessed and then the therapist sat mom up and mom sat on the edge of the bed unsupported and nice and straight too! She sat there for about 10 minutes! The PT person asked mom to move her legs and she managed to move her right leg a bit. Mom had literally just woke up when the PT arrived. Mom did great and I told her so and she looked at me incredulously and said, “I’m not doing anything though.” She is too funny! The PT said that mom would start PT immediately. Mom will be taken to the facility gym for PT now. It all depends on her secretions and whether the head of respiratory feels mom is up to it or not. Anthony did PT with mom and her range of motion as well.
The wound care nurse came to see mom’s sacrum (lower back) wound and the wound looks better already. The nurse prescribed an ointment and a patch. The wound is coming along and is not open as much as it was 2 nights ago.
I cleaned mom’s ears and she became annoyed with me and said, “Kathy, stop it now!” I love that she used my name!!! She yelled at me!!! And I love it!!!
She asked for her glasses and spent time reading her “All About Me” book. Everyone is so thrilled with her progress. People come in and out all morning to see her and talk to her. She even remembers some of them. I sneezed at one point, and mom said, “God bless you.”
The Occupational Therapist came to see mom and gave her a splint-type of thing for her left hand to keep the hand and fingers straight rather than curled. The fingers on her left hand have curled quite a bit despite working on range of motion exercises.
Mom was put on a scopalomene patch for the excess secretions. The secretions are a lot.
Anthony came to see mom and tried hard to get her laugh but only got a few grins. He asked her about sitting on the side of the bed before and said, “I heard you sat on the side of the bed before?” Mom said, “So what?” She is too funny!
The Occupational Therapist came in several times and one of those times, she said that there was a huge discussion up at the nurses’ station about our family. Evidently, she said they were all arguing and saying that they all want our family to care for them if they get sick!! Haha!
Yesterday and today, the speech therapist came to give mom some food. Mom had blue dyed applesauce both days and did fine swallowing it. Mom swallowed slower than before the shunt but did well swallowing. The speech person said that mom would gradually be reintroduced to food. No meals yet. Mom hasn’t tried to drink yet either.
Mom and I worked on the IPAD today. we looked at photos of family and some of the nature shots I took. She named some of the family members and commented that my nature shots were “Oh wow! Beautiful!” Dad came in the afternoon and I left. Mom kissed Anthony goodbye and spoke to Con and Anthony Michael on the phone.
Claudia and Ava came to see mom in the evening to put her to bed. Mom was sleepy and didn't talk much. She had
a busy day. Claudia and Ava wrote on the magnadoodle and mom looked but didn't read anything. Claudia made mom
laugh a few times. Claudia showed mom some pictures she had in her phone and when she showed her a picture of
John's sister and asked who is this, mom said, "Maria." Claudia said, "But we don't call her Maria. What do we call her?"
mom said, "Rie." Ava worked with mom on her ipad with a spin art app and mom seemed interested. She touched the
screen over and over to create a picture. Then Ava showed mom a new app she has about smoothies and she read the
recipes to mom. Mom lifted her eyebrows every so often in approval of the ingredients. (like mmmm sounds good).
Dad left and mom gave him a kiss. Claudia and Ava left after a while and left the Mets game on for mom. They asked her
if she wanted to watch the Mets and mom shook her head "yes". They kissed her good night and left.
I spoke to the building administrator who told me that everyone is so thrilled to have mom back and came to see mom later in the day. I learned that some hospitals will not take a long term patient for care if the hospital finds out that the patient does not have a bed hold at the facility from which he/she came. This is because it could mean that the patient may get “stuck” in the hospital longer than needed if no beds exist. Scary system we have!!
Mom greeted every person who came to her room today. She also talked to everyone.
I spoke to the head of respiratory who was amazed at the results of the shunt. The respiratory therapist asked about mom’s CPAP machine that mom used to use at home and also asked about what pressure setting the machine is on so that they will know how much pressure mom will need approximately when mom gets off the trach totally!! The therapist said that mom will be monitored for a while on the collarless trach (this is not the vent---there isn’t even a vent in the room) and then the trach itself will come out. At that time, mom will remain on the wing she is on until the stoma (the hole in her throat closes) and then she is good to go!! The respiratory therapist (the head person) also asked about what type of shunt mom has. I have to get the information: What type of shunt, the name of it, whether it ever gets replaced, if she needs evaluation… The head of respiratory said that great progress is expected for mom. The head of respiratory asked mom how she feels and mom asked, “How am I supposed to feel?”
The physical therapist came to see mom too. This is a new person to mom. Mom was assessed and then the therapist sat mom up and mom sat on the edge of the bed unsupported and nice and straight too! She sat there for about 10 minutes! The PT person asked mom to move her legs and she managed to move her right leg a bit. Mom had literally just woke up when the PT arrived. Mom did great and I told her so and she looked at me incredulously and said, “I’m not doing anything though.” She is too funny! The PT said that mom would start PT immediately. Mom will be taken to the facility gym for PT now. It all depends on her secretions and whether the head of respiratory feels mom is up to it or not. Anthony did PT with mom and her range of motion as well.
The wound care nurse came to see mom’s sacrum (lower back) wound and the wound looks better already. The nurse prescribed an ointment and a patch. The wound is coming along and is not open as much as it was 2 nights ago.
I cleaned mom’s ears and she became annoyed with me and said, “Kathy, stop it now!” I love that she used my name!!! She yelled at me!!! And I love it!!!
She asked for her glasses and spent time reading her “All About Me” book. Everyone is so thrilled with her progress. People come in and out all morning to see her and talk to her. She even remembers some of them. I sneezed at one point, and mom said, “God bless you.”
The Occupational Therapist came to see mom and gave her a splint-type of thing for her left hand to keep the hand and fingers straight rather than curled. The fingers on her left hand have curled quite a bit despite working on range of motion exercises.
Mom was put on a scopalomene patch for the excess secretions. The secretions are a lot.
Anthony came to see mom and tried hard to get her laugh but only got a few grins. He asked her about sitting on the side of the bed before and said, “I heard you sat on the side of the bed before?” Mom said, “So what?” She is too funny!
The Occupational Therapist came in several times and one of those times, she said that there was a huge discussion up at the nurses’ station about our family. Evidently, she said they were all arguing and saying that they all want our family to care for them if they get sick!! Haha!
Yesterday and today, the speech therapist came to give mom some food. Mom had blue dyed applesauce both days and did fine swallowing it. Mom swallowed slower than before the shunt but did well swallowing. The speech person said that mom would gradually be reintroduced to food. No meals yet. Mom hasn’t tried to drink yet either.
Mom and I worked on the IPAD today. we looked at photos of family and some of the nature shots I took. She named some of the family members and commented that my nature shots were “Oh wow! Beautiful!” Dad came in the afternoon and I left. Mom kissed Anthony goodbye and spoke to Con and Anthony Michael on the phone.
Claudia and Ava came to see mom in the evening to put her to bed. Mom was sleepy and didn't talk much. She had
a busy day. Claudia and Ava wrote on the magnadoodle and mom looked but didn't read anything. Claudia made mom
laugh a few times. Claudia showed mom some pictures she had in her phone and when she showed her a picture of
John's sister and asked who is this, mom said, "Maria." Claudia said, "But we don't call her Maria. What do we call her?"
mom said, "Rie." Ava worked with mom on her ipad with a spin art app and mom seemed interested. She touched the
screen over and over to create a picture. Then Ava showed mom a new app she has about smoothies and she read the
recipes to mom. Mom lifted her eyebrows every so often in approval of the ingredients. (like mmmm sounds good).
Dad left and mom gave him a kiss. Claudia and Ava left after a while and left the Mets game on for mom. They asked her
if she wanted to watch the Mets and mom shook her head "yes". They kissed her good night and left.
Wednesday, June 15, 2011
Mom Update, June 15, 2011, Wednesday
Claudia began the day with mom. She and mom called dad on phone and mom said to dad, "What did you say?" Also after she hung up, Claudia asked her who was on the phone? Mom said, "Dad." Spoke to speech person about proper trach cuff and the facility speech person had never heard of such a cuff before. The head of respiratory said that everyone can't believe how great mom is doing and the difference in her---but what they are seeing is NOTHING compared to how she was in the hospital. Nurses, CNAs, respiratory people...all came to mom's room today to greet her and welcome her back. Again, everyone noted a marked difference in her. To some, she would say, "Good morning" and "I'm fine thank you" but to others she said nothing. One respiratory person came to see mom and mom said, "Ohhh!!! I remember you!!!" But largely, mom slept. Everyone from respiratory to the doctor said that is to be expected and to just let her sleep and rest. The head of respiratory said mom would be put on a new type of trach collar--a collarless trach. Mom was switched to this trach early in the day. No one at the facility ever heard of the trach cuff that the PA at the hospital spoke of for eating. Mom is off the vent 3 days in a row now!!! In the hospital, the people deal with only acute care and are not familiar with trach cuffs, feeding... The respiratory person said that mom is just tired and that her being tired has nothing to do with the trach collar.
Anthony and Samantha came to see mom next and found her asleep at first, but then awake. Even though she was awake, she was quiet and subdued; no talking. Anthony tried to work on her legs but mom grimaced and said, "Owwwww!" alot and forcefully. Something was hurting her right leg. It appeared to be better later on when I came to see her and later still when the facility doctor came to see her.
John and Ava came to visit mom as well. Ava showed mom her "Brooklyn College" t-shirt and mom read it. Ava and mom worked on the IPAD making designs and talking. John and Samantha and Anthony helped unload 2 carloads of boxes for mom's room.
The speech therapist came to assess mom and said mom is swallowing well. Mom ate a cup of applesauce with no problem.
Dad came next and he sat holding mom's hand while I set up her room. It is almost finished now. Mom's night CNA came to see her and mom smiled at her. Mom was still sleepy. The facility doctor and the respiratory therapist saw mom. Dad questioned the amount of water in the trach line and the respiratory person suddenly realized that there was an overflow container missing from the set up. Thank God dad saw this. The doctor commented on how great mom is doing and looked too. He removed the stitches from mom's neck that held the trach ties on. I am glad the stitches are finally out---they pulled mom's neck in what had to be a very painful manner. The respiratory person and the doctor commented on the amount of secretions mom had and the doctor ordered a specimen to be examined and cultured. The head nurse argued that she wanted mom to have no mitts and no bedrails...."round the mountain again!!!' This nurse is new. I straightened it all out. Mom is in a private room for now and it is great. I wish she could stay there for the duration. Mom was sleeping soundly when I left. I prayed over her and tucked her in for the night.
"By His Spirit He has stamped us with His Eternal Pledge---a sure beginning of what he is destined to complete." 2 Corinthians 1:22
Anthony and Samantha came to see mom next and found her asleep at first, but then awake. Even though she was awake, she was quiet and subdued; no talking. Anthony tried to work on her legs but mom grimaced and said, "Owwwww!" alot and forcefully. Something was hurting her right leg. It appeared to be better later on when I came to see her and later still when the facility doctor came to see her.
John and Ava came to visit mom as well. Ava showed mom her "Brooklyn College" t-shirt and mom read it. Ava and mom worked on the IPAD making designs and talking. John and Samantha and Anthony helped unload 2 carloads of boxes for mom's room.
The speech therapist came to assess mom and said mom is swallowing well. Mom ate a cup of applesauce with no problem.
Dad came next and he sat holding mom's hand while I set up her room. It is almost finished now. Mom's night CNA came to see her and mom smiled at her. Mom was still sleepy. The facility doctor and the respiratory therapist saw mom. Dad questioned the amount of water in the trach line and the respiratory person suddenly realized that there was an overflow container missing from the set up. Thank God dad saw this. The doctor commented on how great mom is doing and looked too. He removed the stitches from mom's neck that held the trach ties on. I am glad the stitches are finally out---they pulled mom's neck in what had to be a very painful manner. The respiratory person and the doctor commented on the amount of secretions mom had and the doctor ordered a specimen to be examined and cultured. The head nurse argued that she wanted mom to have no mitts and no bedrails...."round the mountain again!!!' This nurse is new. I straightened it all out. Mom is in a private room for now and it is great. I wish she could stay there for the duration. Mom was sleeping soundly when I left. I prayed over her and tucked her in for the night.
"By His Spirit He has stamped us with His Eternal Pledge---a sure beginning of what he is destined to complete." 2 Corinthians 1:22
Tuesday, June 14, 2011
Mom Update, June 14, 2011, Tuesday
Today was a whirlwind of surprises! A roller coaster ride to the very end. But (I will give you today’s scripture verse at the beginning of this entry rather than the end),
“All things come together for good to those who love the Lord and are called according to His purpose” Romans 8:28
I woke at 3:00 a.m. this morning in a panic and crying over mom and where she will end up later today. The suspense of the unknown was too much to bear at 3:00 a.m. I prayed and calmed down and put her in God’s Hands again (I’d be so much better off if I just left her there in His Hands rather than snatching her back on and off—because when I snatch the problems back from God, the problems become a burden all anew).
Things looked better in the light of day and I was ready to face whatever came our way. I called the Admissions person at the original facility mom was at first thing in the morning and spoke to a secretary. I told the secretary I was just checking in again and that mom was being released today (I admit it seemed to be a moot cause at that point). As I hung up the phone, the building administrator sent me a message saying, “Welcome back!!! Call Admissions asap. The Big Guy Upstairs answered our prayers!” Don’t ask how, when there were no beds yesterday, but there was a bed there today!! PTL!! A huge burden lifted from my shoulders!!! YAHOOO!! So mom is going back to the original facility she was at which is our family’s first choice!!!
Mom was scheduled to leave the hospital at 3:00. Dad and I threw things together (boxes of things to bring to her room at the facility) and went to the hospital to see mom. Mom was asleep when we arrived. The nurses all said she was awake this morning before we came. Mom opened her eyes once and gave me a silly smirk when she saw me (maybe as if to say, “Oh brother, here she is again putting me to work”?!! haha), but then went back to sleep. The social worker and the nurse told us that mom was scheduled for a CAT Scan before leaving the hospital yesterday, but it was never done! So now we have to wait for mom to get the scan before she is discharged. Mom needs the available bed today!! She needs to claim it and be in it today or she loses the bed. Everyone scurried to get the scan done, but after they moved mom downstairs for the scan, some handwritten prescription for it wasn’t there…so they sent mom back upstairs to wait! Ugh. After much more scurrying and ado, mom is now scheduled to leave the hospital at 5-6 p.m. The scan is rescheduled for 3:30 p.m. right now. I was asked to sign discharge paperwork and saw that all the original medications mom was on at admittance, was back on the paperwork---mom is off every medication now that she has the shunt—except 1 blood pressure medication for 20 mg. and the lasix. I told the social worker to change it. She did. Mom left for the scan at 3:30 as planned. As an aside, now that mom will be back at the original facility, she has no bed hold again. So any hospital stay will warrant mom going back into the facility pool to be up for grabs. As one of our cousins said, “And we are supposed to be a civilized nation?” We went to the Medical Records Office before we left today and put in an order to have mom’s medical records sent to her neurologist. This costs .75 cents a page (out of pocket). Mom has been off the vent and on the trach collar for the last 48 hours straight!! All of mom’s latest tests show that all is well.
The ambulance was right on time at 5:00 p.m. and somehow everything fell into place. PTL! Dad rode in the ambulance with mom to the facility and I followed behind. They arrived at least an hour before me because I was stuck in rush hour traffic and they took the HOV lane. Dad said that, as mom was wheeled in, everyone was yelling, “Hey Dotty’s back! Hi Dotty! Remember me?” and mom rose to the occasion and said, “Hi” and “I’m fine.” She fell asleep as she was being cleaned and inspected. Claudia drove out to see mom and drive dad home. The three of us unpacked 5 of the 10 boxes of things from mom’s room and cleaned things up to our standards with disinfectant… Bad news is that the sore on mom’s sacrum which was all healed, opened up!!! Not good. Please pray that it heals again. The facility was right on it and applied ointment and a bandage right away. We prayed over mom and left. We all will sleep well tonight, I’m sure.
“All things come together for good to those who love the Lord and are called according to His purpose” Romans 8:28
I woke at 3:00 a.m. this morning in a panic and crying over mom and where she will end up later today. The suspense of the unknown was too much to bear at 3:00 a.m. I prayed and calmed down and put her in God’s Hands again (I’d be so much better off if I just left her there in His Hands rather than snatching her back on and off—because when I snatch the problems back from God, the problems become a burden all anew).
Things looked better in the light of day and I was ready to face whatever came our way. I called the Admissions person at the original facility mom was at first thing in the morning and spoke to a secretary. I told the secretary I was just checking in again and that mom was being released today (I admit it seemed to be a moot cause at that point). As I hung up the phone, the building administrator sent me a message saying, “Welcome back!!! Call Admissions asap. The Big Guy Upstairs answered our prayers!” Don’t ask how, when there were no beds yesterday, but there was a bed there today!! PTL!! A huge burden lifted from my shoulders!!! YAHOOO!! So mom is going back to the original facility she was at which is our family’s first choice!!!
Mom was scheduled to leave the hospital at 3:00. Dad and I threw things together (boxes of things to bring to her room at the facility) and went to the hospital to see mom. Mom was asleep when we arrived. The nurses all said she was awake this morning before we came. Mom opened her eyes once and gave me a silly smirk when she saw me (maybe as if to say, “Oh brother, here she is again putting me to work”?!! haha), but then went back to sleep. The social worker and the nurse told us that mom was scheduled for a CAT Scan before leaving the hospital yesterday, but it was never done! So now we have to wait for mom to get the scan before she is discharged. Mom needs the available bed today!! She needs to claim it and be in it today or she loses the bed. Everyone scurried to get the scan done, but after they moved mom downstairs for the scan, some handwritten prescription for it wasn’t there…so they sent mom back upstairs to wait! Ugh. After much more scurrying and ado, mom is now scheduled to leave the hospital at 5-6 p.m. The scan is rescheduled for 3:30 p.m. right now. I was asked to sign discharge paperwork and saw that all the original medications mom was on at admittance, was back on the paperwork---mom is off every medication now that she has the shunt—except 1 blood pressure medication for 20 mg. and the lasix. I told the social worker to change it. She did. Mom left for the scan at 3:30 as planned. As an aside, now that mom will be back at the original facility, she has no bed hold again. So any hospital stay will warrant mom going back into the facility pool to be up for grabs. As one of our cousins said, “And we are supposed to be a civilized nation?” We went to the Medical Records Office before we left today and put in an order to have mom’s medical records sent to her neurologist. This costs .75 cents a page (out of pocket). Mom has been off the vent and on the trach collar for the last 48 hours straight!! All of mom’s latest tests show that all is well.
The ambulance was right on time at 5:00 p.m. and somehow everything fell into place. PTL! Dad rode in the ambulance with mom to the facility and I followed behind. They arrived at least an hour before me because I was stuck in rush hour traffic and they took the HOV lane. Dad said that, as mom was wheeled in, everyone was yelling, “Hey Dotty’s back! Hi Dotty! Remember me?” and mom rose to the occasion and said, “Hi” and “I’m fine.” She fell asleep as she was being cleaned and inspected. Claudia drove out to see mom and drive dad home. The three of us unpacked 5 of the 10 boxes of things from mom’s room and cleaned things up to our standards with disinfectant… Bad news is that the sore on mom’s sacrum which was all healed, opened up!!! Not good. Please pray that it heals again. The facility was right on it and applied ointment and a bandage right away. We prayed over mom and left. We all will sleep well tonight, I’m sure.
Monday, June 13, 2011
Mom Update, June 13, 2011, Monday
Mom was asleep when I arrived but she quickly woke when I sat in front of her. She was sitting in a chair with the trach collar…off the vent. I said hi and she said hi back. I asked how she was and she said, “I’m Ok.” I caught her up on the family activities for the day and she listened intently, watching my face the whole time smiling. Sometimes she would comment, “Oh” or “Yes”… Then we began to do some stretching. We prayed together next. Mom made the sign of the cross and folded her hands in prayer all on her own when I asked if she wanted to pray. We stretched her hands first. Her left hand is very curled and squeezed tightly into a fist. We stretched her fingers. The left fingers hurt badly when stretched. We need to stretch them more so they remain mobile. First I put my hands on hers and stretched her as I gave verbal cues like, “Open, close” speaking while I maneuvered her fingers and hands. Soon, she just watched what I was doing and did it too alone, independently with just a verbal and visual cue and no physical prompting. She managed to open and close her fingers, wiggle her thumbs and pointer fingers in a circle and bend her hands at the wrist---on command with a visual cue. She would watch me and then do what I do. At one point, I tried to get her to watch me move my arms in and out at the chest level and then imitate me but she could only move from the wrist and not the elbow at first. Then, mom did lift each arm slowly—delayed response—and bend each at the elbow at her sides and then slowly put them back down. She did all this about 2-3 times. Next, we began to use the IPAD and use some apps…the first app was the “feature” app---“Show me the one that you plug in” and “Touch the cold one” etc. We came to a picture of a calculator, barbecue and blender. I said, “Which do you plug in mom?” She looked at me wide eyed and shrugged her shoulders and said, “I’m not sure.” So I began to name each item and then follow with the question, “Do you plug that in?” When I came to the blender, mom looked at me incredulously and said, “What’s a blender?” So I described what a blender is and does and what it is used for and told her she has one at home. She was astonished by the description---using a lot of facial expression as she listened to me talk. Then mom fell asleep. Again, this isn’t the same aimless, dazed, deep type of sleep mom did before the shunt. Now, it’s more like a typical cat nap. Using her body and mind is tiring. I asked mom what my name is and she guessed but didn’t know it until I gave her a phonemic cue, “KKkkkkk….” Then she said Kathy. I played music when she would sleep. Nurse said that mom had physical therapy today before I came. Nurse said that mom moved her arms, legs…sat her up on side of bed again and mom did it!!! Today, mom’s nurse said that she learned a lot from watching us work with mom and that it is great how we use every waking moment that mom has to rehabilitate her. The nurse commented on all the grandkids too and how much they know about how to work with mom. One of the “tricks” the nurse learned was to lift mom’s eyelids when she squints so that the nurse can get mom’s attention. The nurse said that we are a “model” family. Haha! Mom slept for an hour and a half and when she woke, we played the “Zoo Animal”app on the IPAD. I showed her 10 pictures of animals along with their names in words. Mom read 3 of 10 independently…the other 7 she read with scaffolding (I had to tell mom the beginning sound or point to the letters in the words or read them and she repeated them). Next, we played “Baseball Math” on the IPAD. In this game, there is a baseball diamond, a pitcher and a batter, along with a Hitting Table and Scoreboard. By touching the pitcher, a multiplication fact appears along side a number board where you put the product in. If the product is correct, the batter hits the ball and runs around the bases. The cycle repeats through 9 innings. Mom was not able to name any numbers or to tell me any facts, but I read them to her so she could hear the names of the numbers as she watched the game progress. Perhaps this would jar her memory. The resident came in next to remove mom’s staples (about 15-19). I held her hand as he did it. She winced and said, “Owww!!” audibly at times. The social worker came in also to say that mom is being discharged tomorrow. No time yet though. The social worker said that the original facility has no bed. The second choice facility in the next county doesn’t have a bed until Wednesday. The social worker said she may not be able to wait until Wednesday and may need to place mom tomorrow at the next available bed wherever that may be….exasperating. I found out information on bed holds too. As a new admit patient, you have to be in any facility 30 days in a row in order to qualify for a 14 day bed hold. If mom goes straight to the original facility, she has no bed hold until September 30. If she goes to another facility first and then to the original one, she has to be in the original one 30 consecutive days and then gets a 14 day bed hold (no more September 30 date consideration).
Dad came late in the afternoon to see mom. Mom’s nurse said that she needed to put mom back on the bed from the chair and that mom needed a lot of suctioning but did not have an awful lot of secretions. So the nurse is asking for medication to clear it all up. The respiratory person came next and suctioned mom and gave her a breathing treatment. The respiratory person said that as for mom’s trach cuff (which is in her throat), it is a “highly specialized” cuff made specially to fit mom’s throat. Mom’s anatomy is such that the cuff she has is a combination of 2 types of cuffs made to fit mom’s throat. As for whether it is the right cuff for eating, the respiratory person said the doctor and speech people would know best which is the correct one. The respiratory therapist said that much of the secretions are not down in mom’s lungs or throat but in the back of her mouth which means that she isn’t swallowing well yet. Mom has a lot of eczema patches on her face and around her nose now since she is in the hospital.
After dad left, mom and I played the Science app on the IPAD…you look at science related pictures and their words. We watched an episode of the Electric Company too. Then we watched Julie & Julia (all on the IPAD). As we watched the movie, one of the attending doctors came in and commented on the change in mom from last week. Mom said hello to the doctor and was attentive and perky while the doctor was with her. He prescribed Robisol for the secretions. As we watched the movie, mom tapped my arm to get my attention and said, “Oh… I’m so out of breath.” She had a lot of secretions and needed to be suctioned. Then she fell asleep and I left.
"Cultivate inner beauty, teh gentle, gracious kind that God delights in." 1 Peter 3:3-4
Dad came late in the afternoon to see mom. Mom’s nurse said that she needed to put mom back on the bed from the chair and that mom needed a lot of suctioning but did not have an awful lot of secretions. So the nurse is asking for medication to clear it all up. The respiratory person came next and suctioned mom and gave her a breathing treatment. The respiratory person said that as for mom’s trach cuff (which is in her throat), it is a “highly specialized” cuff made specially to fit mom’s throat. Mom’s anatomy is such that the cuff she has is a combination of 2 types of cuffs made to fit mom’s throat. As for whether it is the right cuff for eating, the respiratory person said the doctor and speech people would know best which is the correct one. The respiratory therapist said that much of the secretions are not down in mom’s lungs or throat but in the back of her mouth which means that she isn’t swallowing well yet. Mom has a lot of eczema patches on her face and around her nose now since she is in the hospital.
After dad left, mom and I played the Science app on the IPAD…you look at science related pictures and their words. We watched an episode of the Electric Company too. Then we watched Julie & Julia (all on the IPAD). As we watched the movie, one of the attending doctors came in and commented on the change in mom from last week. Mom said hello to the doctor and was attentive and perky while the doctor was with her. He prescribed Robisol for the secretions. As we watched the movie, mom tapped my arm to get my attention and said, “Oh… I’m so out of breath.” She had a lot of secretions and needed to be suctioned. Then she fell asleep and I left.
"Cultivate inner beauty, teh gentle, gracious kind that God delights in." 1 Peter 3:3-4
Sunday, June 12, 2011
Mom Update, June 12, 2011, Sunday
Anthony, Con, Terry, Dad, Lenny, Aunt Carol, and I saw mom today. Her nurse said that she was awake this morning. BUT….while we were there, she mostly slept. She would open her eyes periodically if we opened her eyelids or asked her to open them, but then she’d go right back to sleep. Ugh. We missed her awake time! Her body clock is askew. But the good news is that she IS having very awake periods AND that even in her sleepiness, she was able to follow the commands of the doctor!! Her blood work, chest x-ray…were all good. At about 3 a.m. she came off the trach collar and went back on the vent because her breathing had begun to labor a bit. She was very sleepy even when she was awake today. Yesterday, she grabbed each of Anthony’s family by the face and held each person’s face in both her hands and kissed each one, but not today. The doctor came in to see her and said she would definitely stay in the hospital throughout Monday but couldn’t guarantee Tuesday. So she may be released Tuesday but not sure yet. The doctor asked her to raise her arms, keep them raised, stick out her tongue, show him 2 fingers and mom did it all!!!!! Even though she was sleepy!!! Then when the doctor left, she went back to sleep. The doctor told us mom would be back on the trach collar later. The doctor said she is off all her blood pressure medication and is only on heprin now (maybe lasix too?).!!! Her blood pressure was a little too low---it is the opinion of the doctor that her top number should be above 100 and it was only at 97, so the nurse was told to hydrate her intravenously. The doctor said this would perk her up more and help her to be more awake as well. Later, around 9:00 p.m., I called the hospital and mom's nurse said that mom was AWAKE.... This is a good thing, even though we missed it. Before the shunt, mom had days of sleeping with no awake time. We had a family meeting tonight...all of us...young and old, even and most especially, the grandkids. We all discussed mom and our options for placement and decided that the original facility is best for mom and us at this point in her recovery. If the original facility is not available, we hope to have mom in the facility "grammy" was in which is the one dad, Claudia and I looked at yesterday. No place is perfect.
"A friend loves at all times." Proverbs 17:17
"A friend loves at all times." Proverbs 17:17
Saturday, June 11, 2011
Mom Update, June 11, 2011, Saturday
Ok, so today, I think I have things all figured out…I stay home in the morning, go see the other facility I spoke about yesterday midday, and then see mom in the middle of the afternoon when she is awake. Well…Mom was awake midday when Anthony, Con and the kids came to see her and she was out like a light when dad, Claudia, Terry and I came to see her!! Ugh!! Psych!! Hahaha! Claudia, dad and I went to see the other facility in the next county today. The staffing ratio was comparable to where mom was originally…. 1 RN or LPN for every 5 patients on the vent wing. Twenty-four patients on the vent wing now. Not sure how high it can go because the person who gave us the tour double-talked a lot. Claudia mentioned that she noticed the woman didn’t answer any of my questions…so Claudia would jump in and restate the questions again then I would and the cycle continued until the questions were answered. There are 8 CNAs for 24 patients (don’t know if that is all on one shift or altogether dispersed throughout the day). There are 2 respiratory therapists for the 24 vent patients and they are on duty round the clock 24 hours---but never was clear if the 2 people split a 24 hour shift or if there are 2 respiratory therapists on every shift. Claudia said the person said it was 2 each shift. The place was not filthy but it wasn’t clean either, in my opinion. I felt the other place mom was in was cleaner. Same schpiel regarding the therapies…mom doesn’t qualify unless she can participate. Dad remembers them telling him otherwise the other day though. I felt it was a good stopover place until the old facility has an open bed. We saw one of the people from the old facility at this other facility! We didn’t talk to the person because we wanted to maintain privacy for the person. Also, at this facility there were mats on the floors beside the beds because there are no bed rails again!! Starting over. We asked if we could request the rails…no real reply from her. On a permanent basis, this facility we saw today is too far away for Claudia and me to remain aggressively active in mom’s program for recovery.
SOOOOO…now for mom the wonder woman!! Anthony and Con said she was AMAZING!! When she saw them, she smiled, reached for each of them and hugged each one. She also did something new today---she kept trying to sit up as though to get out of bed!!!!!!!!!!!! At one point, Anthony called me on the phone and I spoke to mom. I said hello, I love you, and I asked her what she was doing? Anthony then asked me what I said to her because she responded, “I’m trying to get up”!!!!!!!!!!!!! She kept trying to get up and kept propping her up on her arm for support too!! At one point, mom grabbed for Anthony’s hand because she wanted him to help her up!! The nurse told Anthony that mom was awake all night watching TV. When the neurosurgeon came to see her this morning, mom could not be woken up and they were all worried until the nurse told them that mom was up the entire night.
Claudia and I brought the IPAD to work on with mom when she woke. They did a word jumble game. There were 3-7 letter words. Mom couldn’t do it alone. Claudia did hand over hand prompting to help mom point to the letters. Then after the words were spelled, we would ask mom to read the words. She read some independently. We did a number game next. Mom was able to independently count 3 items and tell us the number. We did a receptive language game next, following directions like, “Touch the….” and mom had to point to whatever it was. Mom got all of them right. She even used the stylus to touch the right answer. We did a feature game next...like, “Find the one that is flat” or “Show me the one with 4 wheels”….mom did 90% correctly and used the stylus to point too. We did the vegetable game next…you look at the word and the coinciding picture and read the words. Usually, mom’s first response is, “I don’t know” or “I can’t do that” but we just tell her she can and offer a scaffolded type of assistance like a phonemic cue (pronounce the first letter of the word or we give another clue…). These techniques usually get mom through her lack of confidence. With the slightest clue, mom usually gets the answer. We played Solitaire on the IPAD next. It was difficult for mom to do certainly, but she did seem to recognize the game and the general idea of how to play to basic extent. She needed a lot of help in order to play the game. Throughout every game we played, we stated all the directions and options and answers in words so that mom can hear language along with coinciding pictures and actions. Rather than just moving mom’s hand to do things, we talk about what it is she is doing, “Reach up and then point” or “move to the left” or “Good, you touched the number!” Mom remained attentive and participatory for a full 50 minutes!!! Mom didn’t have her glasses on while working on the IPAD either. Most of the time, mom reads without glasses though. Halfway through Solitaire, mom said, “Oh, my head hurts now.” So we stopped playing and she just sat holding dad’s hand and visiting with Terry. We went down to the cafeteria to have dinner and then Terry left. Dad, Claudia and I went back to see mom. She had just been cleaned and changed. The nurse was bagging her to give her an extra boost of oxygen after mom had been changed. We had wondered about this procedure at the other facility—I don’t remember what we learned about it back then in December, but evidently, it is something practiced…even here at this prestigious hospital. Mom was trying to get her breathing in sync when we got back into the room. We all talked to her. I asked her to call dad and she did!!! (just mouthed it). She wouldn’t talk much to Claud and I at first, only dad. She gave him googly eyes and smiled and told him she loved him. She lit up when she saw him. She looked tired so we prayed and were about to leave when she said, “Please stay with me” so who could go? We stayed with her. We had to leave the room for ½ an hour while the shifts changed. While we were there, Claudia began to talk to 3 families in the waiting room and one thing led to another and she showed them the apps on the IPAD and explained how we use it with mom. Then we gave each family the address to the blog. I hope and pray it helps someone. When we came back to the room, we did the number app with mom. She traced about 1/5 of the way around each number and couldn’t point to any on command, but she named a few (8, 3…). Claudia did some dot to dot, connect the dot pictures and they made a pig. I asked mom what it was and she said, “A dog”…close, but no cigar! They did tangrams next. Mom likes to do these. She kept peeking at the TV as we worked though. The doctor came in to check on mom before we left and told us she is doing great and that she has been on the trach collar and off the vent for 24 hours now!!!!! Soon, mom got sleepy and we left. She kissed us all good bye.
“for I am the LORD who heals you.” Exodus 15:26
SOOOOO…now for mom the wonder woman!! Anthony and Con said she was AMAZING!! When she saw them, she smiled, reached for each of them and hugged each one. She also did something new today---she kept trying to sit up as though to get out of bed!!!!!!!!!!!! At one point, Anthony called me on the phone and I spoke to mom. I said hello, I love you, and I asked her what she was doing? Anthony then asked me what I said to her because she responded, “I’m trying to get up”!!!!!!!!!!!!! She kept trying to get up and kept propping her up on her arm for support too!! At one point, mom grabbed for Anthony’s hand because she wanted him to help her up!! The nurse told Anthony that mom was awake all night watching TV. When the neurosurgeon came to see her this morning, mom could not be woken up and they were all worried until the nurse told them that mom was up the entire night.
Claudia and I brought the IPAD to work on with mom when she woke. They did a word jumble game. There were 3-7 letter words. Mom couldn’t do it alone. Claudia did hand over hand prompting to help mom point to the letters. Then after the words were spelled, we would ask mom to read the words. She read some independently. We did a number game next. Mom was able to independently count 3 items and tell us the number. We did a receptive language game next, following directions like, “Touch the….” and mom had to point to whatever it was. Mom got all of them right. She even used the stylus to touch the right answer. We did a feature game next...like, “Find the one that is flat” or “Show me the one with 4 wheels”….mom did 90% correctly and used the stylus to point too. We did the vegetable game next…you look at the word and the coinciding picture and read the words. Usually, mom’s first response is, “I don’t know” or “I can’t do that” but we just tell her she can and offer a scaffolded type of assistance like a phonemic cue (pronounce the first letter of the word or we give another clue…). These techniques usually get mom through her lack of confidence. With the slightest clue, mom usually gets the answer. We played Solitaire on the IPAD next. It was difficult for mom to do certainly, but she did seem to recognize the game and the general idea of how to play to basic extent. She needed a lot of help in order to play the game. Throughout every game we played, we stated all the directions and options and answers in words so that mom can hear language along with coinciding pictures and actions. Rather than just moving mom’s hand to do things, we talk about what it is she is doing, “Reach up and then point” or “move to the left” or “Good, you touched the number!” Mom remained attentive and participatory for a full 50 minutes!!! Mom didn’t have her glasses on while working on the IPAD either. Most of the time, mom reads without glasses though. Halfway through Solitaire, mom said, “Oh, my head hurts now.” So we stopped playing and she just sat holding dad’s hand and visiting with Terry. We went down to the cafeteria to have dinner and then Terry left. Dad, Claudia and I went back to see mom. She had just been cleaned and changed. The nurse was bagging her to give her an extra boost of oxygen after mom had been changed. We had wondered about this procedure at the other facility—I don’t remember what we learned about it back then in December, but evidently, it is something practiced…even here at this prestigious hospital. Mom was trying to get her breathing in sync when we got back into the room. We all talked to her. I asked her to call dad and she did!!! (just mouthed it). She wouldn’t talk much to Claud and I at first, only dad. She gave him googly eyes and smiled and told him she loved him. She lit up when she saw him. She looked tired so we prayed and were about to leave when she said, “Please stay with me” so who could go? We stayed with her. We had to leave the room for ½ an hour while the shifts changed. While we were there, Claudia began to talk to 3 families in the waiting room and one thing led to another and she showed them the apps on the IPAD and explained how we use it with mom. Then we gave each family the address to the blog. I hope and pray it helps someone. When we came back to the room, we did the number app with mom. She traced about 1/5 of the way around each number and couldn’t point to any on command, but she named a few (8, 3…). Claudia did some dot to dot, connect the dot pictures and they made a pig. I asked mom what it was and she said, “A dog”…close, but no cigar! They did tangrams next. Mom likes to do these. She kept peeking at the TV as we worked though. The doctor came in to check on mom before we left and told us she is doing great and that she has been on the trach collar and off the vent for 24 hours now!!!!! Soon, mom got sleepy and we left. She kissed us all good bye.
“for I am the LORD who heals you.” Exodus 15:26
Friday, June 10, 2011
Mom Update, June 8, 2011, Wednesday, The Miracle Begins...
What I wrote today started with all the day’s events as they happened. The beginning is not good. BUT READ ON TO THE END!!!! I am crying as I write this now….the miracle is happening!! Praise God.
Mom was asleep when dad and I arrived today. I woke her by opening her eyelids. She basically just stared and didn’t talk much. She did throw dad a kiss, tell dad, “Don’t do that” and shook her head yes. I talked to her and told her about my day but she just stared at me. Every few seconds, she fell asleep…then she’d open her eyes again and repeat the cycle. She was fighting to stay awake. Dad asked her to lift her arm and she did. He asked her to move her hand in a circular motion and she did. He asked her to touch her head and she began to. I tried to do the IPAD with her but dad, in his anxiety, kept interrupting by crosstalking to mom and speaking loudly and not giving her any time to process. I settled on playing some inspirational, Christian music for her. She seemed to like that.
There were 3 brown outs at the hospital and a black out while we were there. As a precaution, all vent patients had to be bagged. This means that they are hooked up to a balloon like bag that is connected to an oxygen source. It is not comfortable for the patients when awake because it is difficult to establish a rythym to their breathing…the bag tends to pump too much oxygen in and too forcefully which causes discomfort. Mom turned beat red and panicked. Her nurse did not think it was necessary to bag her. I asked if we could request not to bag her and the nurse said yes in a way that basically told us to make the request so I made it. Mom’s breathing was more stabilized but she was breathing in a panic mode from the belly…that’s when I put the music on and prayed over her. Her breathing became even. We still have to wear the gowns and rubber gloves in mom’s room because of a urinary trach infection she has. It is hot and uncomfortable. The rubber gloves hinder typing and texting and working the IPAD (all work on heat sensitivity. The AC in the unit is hardly working and it is warm in here. There is literally water dripping from the ceiling of mom’s room!!!!! The entire ceiling is covered with condensation. Once the lights go on after every brown/black out, the staff is told to use minimal electricity. Many of the unit’s lights are out because of this. It is difficult to do mom’s therapies still and it has been a month now since she is out of her therapeutic routine with us. I want to work and help her get better but it is hard. I think I am getting irritable!!! HAHA! Time to give thanks! I do give thanks in every circumstance. “Give thanks in every circumstance” 2 Thessalonians 5:12
I spoke to the resident who told me that mom is only on ONE of the 3 blood pressure medications she had been on previously. The one medication she is still on is a minimal dose of it now (20 milligrams). Mom is back on heprin (which isn’t the greatest thing for her side effect-wise). However, mom will be on the heprin for only a very short time---just during her hospital stay. They stopped the Lasix altogether but reintroduced it again today in an extremely low dose. She is still on the antibiotics. The resident said he thought there was a bed on the RCU and that mom would be moved there soon (like later today).
The Physical Therapist came to see mom today and ACTUALLY WORKED WITH MOM!! Mom SAT AT THE EDGE OF THE BED UNSUPPORTED!!!! She has never done this before. Mom was also able to apply pressure with her right leg and slightly with her left leg! She lifted her right leg off the bed when a small blanket was rolled up under her knee and did this 4-5 times. She could only wiggle her left foot and not lift the leg at all. She was able to lift both arms on command and to open and close her fingers on command as well as to bend both feet at the ankle on command. She did all this about 4 times. Mom slightly moved her right arm across midline (the middle of her body) and back out with very little prompting. The biggest accomplishment was mom sitting on the edge of the bed---this is the first time in over a year that she did this. The physical therapist said that if mom stays here a bit, mom will get physical therapy 3 times a week at least!!! PTL!!! The physical therapist said she was impressed with mom’s ability---stretching… and what we do with her and to keep up what we are doing. Mom went out like a light after physical therapy…it was a lot of hard work for her.
Mom had a Doppler sonogram on her legs and all was well there. Mom keeps lifting her head off the pillow at her neck and her upper shoulders---many times---alone. Everyone comments that mom works and responds best for us.
When mom woke up at 5:00 p.m., she was awake and alert!! I asked if she wanted to do the hidden pictures on the IPAD which is one of her favorites. She said no but I said, “Oh come on nd do it with me.” I read her the 9 items we had to find in the picture and mom said, “Oh, is that all?” She’s baaaccckkkkkk!!!!! Hahaha!! She talked on the phone with Claudia and answered, “oh, yes, and ok.” When she got off the phone, we asked who was on the phone and mom said, “I don’t know” then I said, “It was your daughter…what’s her name? Clau…” mom said, “Claudia Bonavita” in a disgusted manner!!! She talked to Anthony next on the phone, he told her he had to go back to work and she told me, “Take this, he has to go back to work now.” We did a crossword puzzle:
Clue: “Bow and a….. What do you shoot from a bow” Mom: “Arrow”
Clue: “Famous Roman Emperor. Starts with N…” Mom: “Nero”
Clue: “Distress signal. S…” Mom: “SOS”
Clue: “slightly wet. Starts with D…” Mom: “damp”
Clue: “a short letter. Starts with N…” Mom: “Note”
Clue: “Religious groups. Starts with S…” Mom: “Sects”
Clue: “_____ Beef sandwich. Starts with an R….” Mom: “Roast”
Clue: “Tehran’s country. Starts with an I” Mom: “Iraq”
Clue: “Not together. A…” Mom: “Apart”
I asked mom what she calls me, my nickname, “The p…” She said, “The pest” and smiled. I asked her who my son is “L….” She said, “Lenny” and then she told me who was married to who and who their children are…named them all!!!!! Named all her own children first and last names. Dad asked her what her children’s and grandchildren’s names were and she named them all with only a phonemic cue!! (First initial sounded out).
The doctor came to listen to her lungs and said, “Hi. How are you?” Mom looked right at him and said, “How are you?” He said she was doing great and that she was weaned further from the vent until the blackout occurred. I asked mom what her name is and she said her first and last name and then I asked her what my name is she said she didn’t know. Then I said, “Ka….” She said my name!!!!! FOR THE FIRST TIME IN A YEAR!!!! She said my name!!!!! I asked her what my last name is and said, “Gr…..” Mom said my last name!!!!! PTL!!! She pointed to her mouth and said, “Water” to dad. The nurse came in and mom asked, “What’s the woman’s name?” Later, mom held dad’s hand and stared at him and stroked his face. Mom and I reciteds nursery rhymes she taught me in childhood…”There was a Crooked Man” “Three Little Kittens”…then we sang some old family songs that my “Uncle Twinnies”and my grandpa used to sing: “Does Your Chewing Gum Lose Its Flavor” “A Boy Stood on a Burning Deck” and “Let Me Call You Sweetheart.” Mom knew all the words. The events go on from here. Has mom ever done any of these things before? Yes, most of them...but not all at once in a matter of2 hours!!!
Con, Claudia, Anthony Michael and Sammy came to meet dad and I tonight. I couldn’t leave mom when she was so awake and alert so we waited for the next crew to arrive. When they came, dad and I left. They asked mom what John’s nickname is and mom knew it. They kidded around with mom and Claudia whispered, “My neighbor has diphtheria” and mom said, “God forbid!!” and they asked what movie that line is from and mom said, “Brighton Beach Memoirs.” She kissed Anthony Michael and said Sammy’s name and told Sammy she loved her. Claudia showed mom a picture of herself (Claudia) in a Revolutionary War outfit and mom smacked Claudia in the face over and over in a comedic way and they all laughed and laughed. Claudia wrote on the white board and wrote silly words and mom said, “Stop that’s not funny!” As they left, mom was being prepared to move to the Medical ICU (not Respiratory yet because no beds).
Will I ever rest though? Now that she is awake and alert...I am frightened that putting her in the wrong place will set her back again....I saw my mom today for the first time in a year---I don't want to lose her again.... Please pray for God's Divine placement for mom. Thanks.
“Let everything that has breath praise the Lord” Psalm 150:6
Mom was asleep when dad and I arrived today. I woke her by opening her eyelids. She basically just stared and didn’t talk much. She did throw dad a kiss, tell dad, “Don’t do that” and shook her head yes. I talked to her and told her about my day but she just stared at me. Every few seconds, she fell asleep…then she’d open her eyes again and repeat the cycle. She was fighting to stay awake. Dad asked her to lift her arm and she did. He asked her to move her hand in a circular motion and she did. He asked her to touch her head and she began to. I tried to do the IPAD with her but dad, in his anxiety, kept interrupting by crosstalking to mom and speaking loudly and not giving her any time to process. I settled on playing some inspirational, Christian music for her. She seemed to like that.
There were 3 brown outs at the hospital and a black out while we were there. As a precaution, all vent patients had to be bagged. This means that they are hooked up to a balloon like bag that is connected to an oxygen source. It is not comfortable for the patients when awake because it is difficult to establish a rythym to their breathing…the bag tends to pump too much oxygen in and too forcefully which causes discomfort. Mom turned beat red and panicked. Her nurse did not think it was necessary to bag her. I asked if we could request not to bag her and the nurse said yes in a way that basically told us to make the request so I made it. Mom’s breathing was more stabilized but she was breathing in a panic mode from the belly…that’s when I put the music on and prayed over her. Her breathing became even. We still have to wear the gowns and rubber gloves in mom’s room because of a urinary trach infection she has. It is hot and uncomfortable. The rubber gloves hinder typing and texting and working the IPAD (all work on heat sensitivity. The AC in the unit is hardly working and it is warm in here. There is literally water dripping from the ceiling of mom’s room!!!!! The entire ceiling is covered with condensation. Once the lights go on after every brown/black out, the staff is told to use minimal electricity. Many of the unit’s lights are out because of this. It is difficult to do mom’s therapies still and it has been a month now since she is out of her therapeutic routine with us. I want to work and help her get better but it is hard. I think I am getting irritable!!! HAHA! Time to give thanks! I do give thanks in every circumstance. “Give thanks in every circumstance” 2 Thessalonians 5:12
I spoke to the resident who told me that mom is only on ONE of the 3 blood pressure medications she had been on previously. The one medication she is still on is a minimal dose of it now (20 milligrams). Mom is back on heprin (which isn’t the greatest thing for her side effect-wise). However, mom will be on the heprin for only a very short time---just during her hospital stay. They stopped the Lasix altogether but reintroduced it again today in an extremely low dose. She is still on the antibiotics. The resident said he thought there was a bed on the RCU and that mom would be moved there soon (like later today).
The Physical Therapist came to see mom today and ACTUALLY WORKED WITH MOM!! Mom SAT AT THE EDGE OF THE BED UNSUPPORTED!!!! She has never done this before. Mom was also able to apply pressure with her right leg and slightly with her left leg! She lifted her right leg off the bed when a small blanket was rolled up under her knee and did this 4-5 times. She could only wiggle her left foot and not lift the leg at all. She was able to lift both arms on command and to open and close her fingers on command as well as to bend both feet at the ankle on command. She did all this about 4 times. Mom slightly moved her right arm across midline (the middle of her body) and back out with very little prompting. The biggest accomplishment was mom sitting on the edge of the bed---this is the first time in over a year that she did this. The physical therapist said that if mom stays here a bit, mom will get physical therapy 3 times a week at least!!! PTL!!! The physical therapist said she was impressed with mom’s ability---stretching… and what we do with her and to keep up what we are doing. Mom went out like a light after physical therapy…it was a lot of hard work for her.
Mom had a Doppler sonogram on her legs and all was well there. Mom keeps lifting her head off the pillow at her neck and her upper shoulders---many times---alone. Everyone comments that mom works and responds best for us.
When mom woke up at 5:00 p.m., she was awake and alert!! I asked if she wanted to do the hidden pictures on the IPAD which is one of her favorites. She said no but I said, “Oh come on nd do it with me.” I read her the 9 items we had to find in the picture and mom said, “Oh, is that all?” She’s baaaccckkkkkk!!!!! Hahaha!! She talked on the phone with Claudia and answered, “oh, yes, and ok.” When she got off the phone, we asked who was on the phone and mom said, “I don’t know” then I said, “It was your daughter…what’s her name? Clau…” mom said, “Claudia Bonavita” in a disgusted manner!!! She talked to Anthony next on the phone, he told her he had to go back to work and she told me, “Take this, he has to go back to work now.” We did a crossword puzzle:
Clue: “Bow and a….. What do you shoot from a bow” Mom: “Arrow”
Clue: “Famous Roman Emperor. Starts with N…” Mom: “Nero”
Clue: “Distress signal. S…” Mom: “SOS”
Clue: “slightly wet. Starts with D…” Mom: “damp”
Clue: “a short letter. Starts with N…” Mom: “Note”
Clue: “Religious groups. Starts with S…” Mom: “Sects”
Clue: “_____ Beef sandwich. Starts with an R….” Mom: “Roast”
Clue: “Tehran’s country. Starts with an I” Mom: “Iraq”
Clue: “Not together. A…” Mom: “Apart”
I asked mom what she calls me, my nickname, “The p…” She said, “The pest” and smiled. I asked her who my son is “L….” She said, “Lenny” and then she told me who was married to who and who their children are…named them all!!!!! Named all her own children first and last names. Dad asked her what her children’s and grandchildren’s names were and she named them all with only a phonemic cue!! (First initial sounded out).
The doctor came to listen to her lungs and said, “Hi. How are you?” Mom looked right at him and said, “How are you?” He said she was doing great and that she was weaned further from the vent until the blackout occurred. I asked mom what her name is and she said her first and last name and then I asked her what my name is she said she didn’t know. Then I said, “Ka….” She said my name!!!!! FOR THE FIRST TIME IN A YEAR!!!! She said my name!!!!! I asked her what my last name is and said, “Gr…..” Mom said my last name!!!!! PTL!!! She pointed to her mouth and said, “Water” to dad. The nurse came in and mom asked, “What’s the woman’s name?” Later, mom held dad’s hand and stared at him and stroked his face. Mom and I reciteds nursery rhymes she taught me in childhood…”There was a Crooked Man” “Three Little Kittens”…then we sang some old family songs that my “Uncle Twinnies”and my grandpa used to sing: “Does Your Chewing Gum Lose Its Flavor” “A Boy Stood on a Burning Deck” and “Let Me Call You Sweetheart.” Mom knew all the words. The events go on from here. Has mom ever done any of these things before? Yes, most of them...but not all at once in a matter of2 hours!!!
Con, Claudia, Anthony Michael and Sammy came to meet dad and I tonight. I couldn’t leave mom when she was so awake and alert so we waited for the next crew to arrive. When they came, dad and I left. They asked mom what John’s nickname is and mom knew it. They kidded around with mom and Claudia whispered, “My neighbor has diphtheria” and mom said, “God forbid!!” and they asked what movie that line is from and mom said, “Brighton Beach Memoirs.” She kissed Anthony Michael and said Sammy’s name and told Sammy she loved her. Claudia showed mom a picture of herself (Claudia) in a Revolutionary War outfit and mom smacked Claudia in the face over and over in a comedic way and they all laughed and laughed. Claudia wrote on the white board and wrote silly words and mom said, “Stop that’s not funny!” As they left, mom was being prepared to move to the Medical ICU (not Respiratory yet because no beds).
Will I ever rest though? Now that she is awake and alert...I am frightened that putting her in the wrong place will set her back again....I saw my mom today for the first time in a year---I don't want to lose her again.... Please pray for God's Divine placement for mom. Thanks.
“Let everything that has breath praise the Lord” Psalm 150:6
Mom Update, June 10, 2011, Friday
The day began with a call I put in to the hospital social worker. I inquired about who wrote on mom’s discharge papers that she is totally vent dependent and will never be able to be weaned from the vent. I was told it was, “probably a nurse” and that the social worker would find out who wrote it and get back to me. Obviously, this report is not true, considering the fact that mom was just on a trach collar yesterday. I let the social worker know that I did NOT want that in any of mom’s discharge papers and that we want a copy of the paperwork. I don’t have a copy yet. I asked the social worker if mom’s being on a trach collar and staying on one changes her options and the social worker thought so but said someone would get back to me on that too. I also inquired about the confusing discharge times/days---seconds---and was told that the social worker would be talking to the neurosurgeon and then would get back to me.
I then called the facility mom used to be at and spoke to the Admissions person who told me that the social worker from the hospital was very rude and yelled yesterday. I was told there are still no beds at the old facility.
Dad went to see the facility in the next county from us which is where “Grammy” used to be for 3 weeks before she died. Grammy is mom’s mother. At the time Grammy was there, the place was a dive. Dad says that it is all redecorated and renovated and is beautiful now. Dad had a tour of the entire facility and when he got to the vent unit---he met one of the people from mom’s old facility. This therapist and 3 others from mom’s old facility all work at both this and the other facility. Small world. This made dad feel so at home and safe there. One of the people is someone dad really likes a lot—nice person but I find the person lacks hope and always says things like, “Your mom may have to be on the vent forever, even though that’s not what you want to hear…” etc. Sally Sunshine!! Haha! Dad said the place has 24 hour respiratory care and many therapists on staff at once. He wants us to go see the place with him tomorrow morning. He said mom was awake when he arrived today.
Anthony was with mom early in the morning and stayed until the afternoon. He said that mom was asleep at first but then woke around midday when he woke her and opened her eyelids. He said that when she opened her eyes, she was smiling and happy to see him and was wide eyed and alert. He said that her demeanor was the old mom again!!! He was so happy. He said she didn’t talk much, just sat smiling and listening to him talk. He told her Sammy graduates tonight and she said, “Ohhhh….” And smiled. He told her about the Yankees losing and she smiled and said, “Really?” She sounded sort of conversational for the first time even though she can’t keep the conversation going…she listens and comments now. Anthony said mom listened to Con talk to her on the phone and commented a few times. He said she moved her arms around a lot and very well…easily wiping her eyes or nose or whatever. Anthony has his own business---he is a draftsman and a really great one—but that’s why he can make time to see mom during the day.
The doctor/neurosurgeon came to talk to Anthony and Dad and said her lungs are fine. She is doing well with the trach collar and weaning but since the shunt, her blood pressure gets low sometimes so they took her off the trach collar and put her back on the vent because the low blood pressure made her labor too much on the collar and also made her have a lot of secretions. They will try the collar again though. They put mom on an IV to hydrate her and her blood pressure went back up and the doctor was happy about that. The surgeon said mom will be in the hospital a day or 2 to be monitored more and the Admissions person at the old facility said that it is doubtful anyone will talk a new patient over the weekend. Hopefully, mom will stay put now. Though, mom may be moved back to the NSCU later today.
I was planning to go upstate with Lenny but dad asked me to stay with him until mom gets settled…he never asks for anything, so of course I will stay with him. Claudia, John, Jean and I went to see mom tonight. Mom was amazing!!!!!! She was awake and alert. Dad had just left her. I said, "Mom, look who came to see you!!!" pointing to John and Jean and said, "Who is this? What's his name?" Mom said, "John Bonavita" She also said his nickname. She named Jean with only a phonemic cue "Jjjjjjj....." and then Jean told her he graduated college saying, "Nonny, guess what? I graduated college!" Mom opened her eyes widely, stared at Jean in surprise with a huge smile and then a teary looking face and grabbed his hand in both of hers and kissed it then she clasped her hands together as if in prayer and shook them back and forth in thanks to God!!!! We cried. Jean sang to her and she laughed. Claudia goofed around and mom laughed some more. Finally, mom said, "Oh my back hurts"!!!!!!!!!!!!!!!! This is the first time in a year that she was able to tell us how she felt!! Claudia got the nurse and told mom the nurse was coming with medication for her and then asked mom, "Does your back hurt from coughing so much?" (mom was back on the trach collar and doing well but coughing a lot and secretions) and mom said, "No, from laughing" and we all laughed and the nurse said then no medication is needed for laughing. Claudia and John cried they were so glad and mom said, "What's wrong?" and CLaudia said, "Nothing...it's just that we waited a year for you to get better and come back to us" and mom looked shocked and said, "A YEAR?????!!!!!" John sang to mom and held her hand and he asked her about shows they did together. He said, "Mom, what show was it that you and me were in and Lou played somebody whose last name was 'Detroit.' What was his first name?? Something Detroit" and mom said, "Nathan." Then John said, "Yeah right!!! Right!!Who did you play?" Mom said, "Adelaide" and then John asked who he was and said he sang the song "Sit down you're rocking the boat" and mom said, "Nicely Nicely." They reminisced for a long while about their shows and mom knew all the answers and even many without prompts. She played tic tac toe with Claudia too. She kept asking for Jeanie as she calls him and listened to us all intently as we spoke to her. She did sooooooo much in 2 hours it is too much to write here. We called Aunt Carol and mom put the phone to her ear and answered, "Hello" when Aunt Carol said hello. We spoke to the surgeon who said she is amazing compared to last year and we told him all we've been doing for mom and he couldn't believe it. The surgeon said mom will be in the hospital through Sunday and maybe even Monday too. He wants to watch and observe her a bit. PTL!!!!
"Taste and see that the Lord is good" Psalm 34:8
I then called the facility mom used to be at and spoke to the Admissions person who told me that the social worker from the hospital was very rude and yelled yesterday. I was told there are still no beds at the old facility.
Dad went to see the facility in the next county from us which is where “Grammy” used to be for 3 weeks before she died. Grammy is mom’s mother. At the time Grammy was there, the place was a dive. Dad says that it is all redecorated and renovated and is beautiful now. Dad had a tour of the entire facility and when he got to the vent unit---he met one of the people from mom’s old facility. This therapist and 3 others from mom’s old facility all work at both this and the other facility. Small world. This made dad feel so at home and safe there. One of the people is someone dad really likes a lot—nice person but I find the person lacks hope and always says things like, “Your mom may have to be on the vent forever, even though that’s not what you want to hear…” etc. Sally Sunshine!! Haha! Dad said the place has 24 hour respiratory care and many therapists on staff at once. He wants us to go see the place with him tomorrow morning. He said mom was awake when he arrived today.
Anthony was with mom early in the morning and stayed until the afternoon. He said that mom was asleep at first but then woke around midday when he woke her and opened her eyelids. He said that when she opened her eyes, she was smiling and happy to see him and was wide eyed and alert. He said that her demeanor was the old mom again!!! He was so happy. He said she didn’t talk much, just sat smiling and listening to him talk. He told her Sammy graduates tonight and she said, “Ohhhh….” And smiled. He told her about the Yankees losing and she smiled and said, “Really?” She sounded sort of conversational for the first time even though she can’t keep the conversation going…she listens and comments now. Anthony said mom listened to Con talk to her on the phone and commented a few times. He said she moved her arms around a lot and very well…easily wiping her eyes or nose or whatever. Anthony has his own business---he is a draftsman and a really great one—but that’s why he can make time to see mom during the day.
The doctor/neurosurgeon came to talk to Anthony and Dad and said her lungs are fine. She is doing well with the trach collar and weaning but since the shunt, her blood pressure gets low sometimes so they took her off the trach collar and put her back on the vent because the low blood pressure made her labor too much on the collar and also made her have a lot of secretions. They will try the collar again though. They put mom on an IV to hydrate her and her blood pressure went back up and the doctor was happy about that. The surgeon said mom will be in the hospital a day or 2 to be monitored more and the Admissions person at the old facility said that it is doubtful anyone will talk a new patient over the weekend. Hopefully, mom will stay put now. Though, mom may be moved back to the NSCU later today.
I was planning to go upstate with Lenny but dad asked me to stay with him until mom gets settled…he never asks for anything, so of course I will stay with him. Claudia, John, Jean and I went to see mom tonight. Mom was amazing!!!!!! She was awake and alert. Dad had just left her. I said, "Mom, look who came to see you!!!" pointing to John and Jean and said, "Who is this? What's his name?" Mom said, "John Bonavita" She also said his nickname. She named Jean with only a phonemic cue "Jjjjjjj....." and then Jean told her he graduated college saying, "Nonny, guess what? I graduated college!" Mom opened her eyes widely, stared at Jean in surprise with a huge smile and then a teary looking face and grabbed his hand in both of hers and kissed it then she clasped her hands together as if in prayer and shook them back and forth in thanks to God!!!! We cried. Jean sang to her and she laughed. Claudia goofed around and mom laughed some more. Finally, mom said, "Oh my back hurts"!!!!!!!!!!!!!!!! This is the first time in a year that she was able to tell us how she felt!! Claudia got the nurse and told mom the nurse was coming with medication for her and then asked mom, "Does your back hurt from coughing so much?" (mom was back on the trach collar and doing well but coughing a lot and secretions) and mom said, "No, from laughing" and we all laughed and the nurse said then no medication is needed for laughing. Claudia and John cried they were so glad and mom said, "What's wrong?" and CLaudia said, "Nothing...it's just that we waited a year for you to get better and come back to us" and mom looked shocked and said, "A YEAR?????!!!!!" John sang to mom and held her hand and he asked her about shows they did together. He said, "Mom, what show was it that you and me were in and Lou played somebody whose last name was 'Detroit.' What was his first name?? Something Detroit" and mom said, "Nathan." Then John said, "Yeah right!!! Right!!Who did you play?" Mom said, "Adelaide" and then John asked who he was and said he sang the song "Sit down you're rocking the boat" and mom said, "Nicely Nicely." They reminisced for a long while about their shows and mom knew all the answers and even many without prompts. She played tic tac toe with Claudia too. She kept asking for Jeanie as she calls him and listened to us all intently as we spoke to her. She did sooooooo much in 2 hours it is too much to write here. We called Aunt Carol and mom put the phone to her ear and answered, "Hello" when Aunt Carol said hello. We spoke to the surgeon who said she is amazing compared to last year and we told him all we've been doing for mom and he couldn't believe it. The surgeon said mom will be in the hospital through Sunday and maybe even Monday too. He wants to watch and observe her a bit. PTL!!!!
"Taste and see that the Lord is good" Psalm 34:8
Thursday, June 9, 2011
Mom Update, June 9, 2011, Thursday
My head is spinning.
Anthony began the day with mom. She was in the Medical ICU and asleep most of the time. Anthony opened her eyelids and she'd look at him and keep them open a couple of minutes but then go back to sleep. She was fighting to stay awake. She answered questions though even when the doctor came in to see her!! The doctor asked mom to lift her arms and mom did it, moved her right foot but not the left---both on command. He asked her what her name was but she didn't answer. Mom's friends Flo, Maureen and Marty came to see her. Unfortunately, she was alseep most of the time. She did smile at them when she saw them. She only woke when they opened her eyes. Dad was there too and when dad asked her who used to do a certain thing, mom answered, "My father" and she was correct.
We are realizing that she doesn't come to life and wake up at the hospital until about 2:30-3:00 p.m.
Here is where my head spins....I had planned to see mom midday but got stuck doing errands and then I planned to meet my book group in the afternoon so I didn't see her today. Anthony called to tell me that mom was being discharged from the hospital today!!!! Surprise! So much for weaning and the RCU, I thought. The social worker called to find out where we want mom to go. I called all the family members and took a vote. I called the social worker back and gave her our ranking of the top 5. The social worker said she needed me to rank more than 5 because most facilities were full. I called the old facility (oddly our number 1 choice---the logic---go with what you know)...but they are full today. This could change tomorrow. Mom goes on their bed wait list. I have to call them back when mom gets moved. The building administrator has been in contact with me faithfully the last 5 days or so and said mom goes on the list but that we have to pay out of pocket for the transportation. (whatever). I asked the administrator if the process is as difficult to transfer as it seems and if it is even likely mom will be transferred but no reply as yet. The social worker called back to say that the 2 vent facilities in our county are full and so were 5 of the 6 facilities in the next county...so far, after numerous phone calls from the social worker, there are only 2 facilities who said they'd take mom and they are over 50 miles away from where I live. There is another facility in the county next to ours (the larger one we saw Sunday our number 3) who may take her (the smaller one and others said no because mom's Medicaid is still pending). This facility had a cranky person on the phone who said I needed to fax her ALL THE MEDICAID paperwork for the last 5 years of financial statements tonight!!!! I said I couldn't do it that quickly and that what she is asking for is literally BOXES of information. I called the advocate we hired who is filing the Medicaid application for us and the advocate took over so far. This same person told me that as per the hospital report sent to them---"Your mother is a long term care patient who will never leave a facility and is totally unable to ever be weaned from a vent." ?????????????????????? HUH????? This isn't what the hospital told us......hmmmm.....could the original facility mom was in not be the only one who doesn't talk to each other????? Literally, I began to spin internally....I needed a hug and wanted to cry from feeling overwhelmed. I prayed and texted 2 friends to pray for me. Literally, 15 MINUTES LATER, dad calls to say that the neurosurgeon and respiratory therapist and he were with mom and they took her OFF THE VENT and put her on the trach collar and she was doing great so far!!!!?????? I let go and let God at that point. If off the vent, mom can go anywhere and more doors open closer to home. Dad said mom woke at 3 p.m. and began to talk and follow commands too. The neurosurgeon and therapist said mom would not be released today but the social worker told me she could be released tonight at even 11 p.m. ????? Spinning. If there is more than one facility who will take mom, we choose from those, if not, mom just gets shipped wherever until a bed opens where we want her to be. I plan to follow up on the report sent to facilities saying mom is never going to be able to be removed from a vent!!!! WHAT IS THAT?????
????? All I know is that God took over from there....He was and is on the move...albeit kinda quick for me...but hey, He is in control and that's OK by me. Pray.
""The LORD your God is in your midst, A victorious warrior. He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy" Zephaniah 3:17
Anthony began the day with mom. She was in the Medical ICU and asleep most of the time. Anthony opened her eyelids and she'd look at him and keep them open a couple of minutes but then go back to sleep. She was fighting to stay awake. She answered questions though even when the doctor came in to see her!! The doctor asked mom to lift her arms and mom did it, moved her right foot but not the left---both on command. He asked her what her name was but she didn't answer. Mom's friends Flo, Maureen and Marty came to see her. Unfortunately, she was alseep most of the time. She did smile at them when she saw them. She only woke when they opened her eyes. Dad was there too and when dad asked her who used to do a certain thing, mom answered, "My father" and she was correct.
We are realizing that she doesn't come to life and wake up at the hospital until about 2:30-3:00 p.m.
Here is where my head spins....I had planned to see mom midday but got stuck doing errands and then I planned to meet my book group in the afternoon so I didn't see her today. Anthony called to tell me that mom was being discharged from the hospital today!!!! Surprise! So much for weaning and the RCU, I thought. The social worker called to find out where we want mom to go. I called all the family members and took a vote. I called the social worker back and gave her our ranking of the top 5. The social worker said she needed me to rank more than 5 because most facilities were full. I called the old facility (oddly our number 1 choice---the logic---go with what you know)...but they are full today. This could change tomorrow. Mom goes on their bed wait list. I have to call them back when mom gets moved. The building administrator has been in contact with me faithfully the last 5 days or so and said mom goes on the list but that we have to pay out of pocket for the transportation. (whatever). I asked the administrator if the process is as difficult to transfer as it seems and if it is even likely mom will be transferred but no reply as yet. The social worker called back to say that the 2 vent facilities in our county are full and so were 5 of the 6 facilities in the next county...so far, after numerous phone calls from the social worker, there are only 2 facilities who said they'd take mom and they are over 50 miles away from where I live. There is another facility in the county next to ours (the larger one we saw Sunday our number 3) who may take her (the smaller one and others said no because mom's Medicaid is still pending). This facility had a cranky person on the phone who said I needed to fax her ALL THE MEDICAID paperwork for the last 5 years of financial statements tonight!!!! I said I couldn't do it that quickly and that what she is asking for is literally BOXES of information. I called the advocate we hired who is filing the Medicaid application for us and the advocate took over so far. This same person told me that as per the hospital report sent to them---"Your mother is a long term care patient who will never leave a facility and is totally unable to ever be weaned from a vent." ?????????????????????? HUH????? This isn't what the hospital told us......hmmmm.....could the original facility mom was in not be the only one who doesn't talk to each other????? Literally, I began to spin internally....I needed a hug and wanted to cry from feeling overwhelmed. I prayed and texted 2 friends to pray for me. Literally, 15 MINUTES LATER, dad calls to say that the neurosurgeon and respiratory therapist and he were with mom and they took her OFF THE VENT and put her on the trach collar and she was doing great so far!!!!?????? I let go and let God at that point. If off the vent, mom can go anywhere and more doors open closer to home. Dad said mom woke at 3 p.m. and began to talk and follow commands too. The neurosurgeon and therapist said mom would not be released today but the social worker told me she could be released tonight at even 11 p.m. ????? Spinning. If there is more than one facility who will take mom, we choose from those, if not, mom just gets shipped wherever until a bed opens where we want her to be. I plan to follow up on the report sent to facilities saying mom is never going to be able to be removed from a vent!!!! WHAT IS THAT?????
????? All I know is that God took over from there....He was and is on the move...albeit kinda quick for me...but hey, He is in control and that's OK by me. Pray.
""The LORD your God is in your midst, A victorious warrior. He will exult over you with joy, He will be quiet in His love, He will rejoice over you with shouts of joy" Zephaniah 3:17
Tuesday, June 7, 2011
Mom Update, June 7, 2011, Tuesday
We all had to work this morning so I called the NSCU to see how mom's night and morning were. Her nurse told me that mom was doing well but not too much difference between yesterday after the surgery and this morning. Mom was able to follow a few commands and was still sleepy. The nurse said that they hope mom will be progressing more and more as the days, and even the hours, go by.
Stuff about our health care system (or maybe just about the places we have experience with or both). The hospital mom is in is noted for its work on people with brain injuries. There is an entire center of the hospital devoted to brain injured people, such as mom for example. However.....things happen no matter where you go, or so it seems. For example, here at this reputable hospital......
-after both the spinal tap and the surgery, no surgeon came to speak to us when the procedures were completed. I had to hunt them down,.
-we were never told which waiting room to wait in following the surgery (we were in the wrong one)
-on 3 separate occasions at the hospital, I have walked into mom's cubicle to find her drenched in liquid (once she was covered in the formula from a leaky G-tube [hmm...didn't the same thing happen at both the facility AND the other hospital she was in prior????], and twice her IV leaked all over her). On 2 of these occasions, the nurses were so busy, I just changed mom's gown myself.
-No one is around EVER to consult with us...to let us know who assessed her or when or what the results of the consults were.... If we are not there at the time, we learn nothing because no one has the answers.
-Assessments are done verbally and quickly with mom---no processing time allotted given her head injury (the stroke)
-we never met the anesthesiologist before the surgery
These are the highlights. I write them, not to complain or put down any of the surgeons, nurses, aides...at the hospital, nor to criticize the outstanding work they do, but to point out the fact that no matter where you are...there is always a certain level of care that underlies the greater issues involved. What can be learned? Advocate. Make yourself available as much as you are able. Understand that, in these times of budgetary cut backs, understaffing runs rampant sometimes. Realize that sometimes a surgical job well done is the issue to hone in on and not the fact that a patient is a whole being who includes a caring, anxious family. Pick the meat from the bones and don't throw out the baby with the bathwater. Stuff happens. And it happens everywhere!!! So why have I voiced and continue to voice complaints in the past and present, to be heard so that hopefully, someone else can learn or glean from our experience and most of all so that hopefully things that currently exist can change. Though we realize nothing is perfect, we can't ever let that hinder us from searching for perfection. Exist in the balance.
The quest to find a facility.... There is much to consider.
-The opinions of every family member counts
-Each family member is responsible for stating their opinions and advocating strongly about the issues he/she feels are important to the well being of the member who is a patient
-Each family member is responsible to carry out, on their own at times, the issues and tasks that need to be done and not expect another family member to carry out their wishes for them
-Each family member needs to look at him/herself in the end and know that he/she did the best they could possibly do for their loved one given the circumstances in their own lives
AT THIS POINT IN MOM'S RECOVERY --- she is NOT able to follow a command and is on a vent. The vent greatly limits our options in reference to available facilities to place mom (only 2 facilities in our county and 5 in the other close county...we could go to the city but not much there either).
-Goal #1 is to get mom off the vent (then she can go anywhere)
- Goal #2 is to get mom to consistently follow commands (no following commands but off a vent still equals no therapies---physical, occupational, speech). Just because mom is of the vent, doesn't mean mom automatically gets therapies.
At this point in mom's recovery, given her above circumstances, her recovery depends on US...her family. WE have to work on her therapeutically---physically, occupationally, linguistically and cognitively. WE, her family, need to be present. This affects the location of the facility. If the facility is too far, some family members will not be able to come to work with mom as often as we do now. As long as mom can't follow a command, or is not able to have the stamina to withstand 6-8 hours of therapy, she will not qualify for aggressive rehabilitation.
-if we put mom in a new facility, emotionally this would give us perhaps a new sense of hope-we would look at a new facility like a new beginning, starting over with new people
-The negative side to a new facility is that there is no familiarity. The people in the current facility mom is in know us and mom, we have freedom to bring our tools to work with mom there, we have established boundaries there both for us and the people who work in the facility, we can visit 24 hours a day, we know who and what we are up against in the current facility and how to negotiate their system. A new facility could be much better or much worse...there is the element of the unknown.
-The patient to nurse (RN and LPN) at the current facility is greater than elsewhere (including the aides
-If we have 4 people in a room (one facility we like has this set up), then the environment will be noisy and distracting in reference to working with mom. A person recovering from a stroke needs no distractions in order to concentrate.
-If we change facilities, mom will have a new hospital to have scans done
-If we change facilities, mom will have a new neurologist (we love the neurologist she has now)
Mom's day was a sleepy one, unfortunately. Anthony saw mom today and mom slept the whole time. Even when he tried to open her eyes, she was totally out of it and sleepy. The respiratory therapists said mom's numbers look good. Mom will be moved, hopefully, to the RCU any time now to be worked on for aggressive vent weaning. Every time mom is taken totally off the vent---every day since she arrived at the hospital, she is not able to breathe on her own. Right now, mom is breathing mostly on her own with a little back-up from the vent. Mom is grimacing alot but not waking up.
The resident told dad, Aunt Carol and I that mom hasn't been coughing since the shunt is in, and hasn't had any secretions since the shunt is in (during suctioning). The CAT Scan looked good and the ventricles of the brain are beginning to shrink slightly which is good because it means there is less fluid on the brain. I had the impression that they were hoping for more shrinkage than what they saw so far. I asked if the ventricles can shrink more and was told yes which would be good. The resident had hoped to release mom on Thursday when she finished both of her antibiotics but mom is not progressing as quickly as they would like and have hoped. She is progressing and followed some commands, but not at the spend he hoped she would.. The resident said mom's sleepiness could be due to the trauma on the brain from the surgery and due to the anesthesia as well. She smiled broadly when she saw Aunt Carol. She smiled as we spoke to her but you could see that she had a hard time keeping her eyes open. She was fighting to keep them open. She also finished a line of a silly song again and smiled. She grimaced a lot on and off too as she slept. Frequently, mom would lift her head off the pillow which is good. The nurse said that the sleepiness is typical sometimes and that she did follow some commands earlier in the day. The resident said that they had hoped and expected to see a dramatic change in her affect based on the difference in her after the spinal tap but that it could take time. The resident said that mom will be here at the hospital a while longer since she isn’t as alert as they had expected. We were told that mom is breathing very well with minimal support from the vent when needed. Otherwise, she is breathing on the CPAP mode of the vent. They plan to change her trach cuff in the near future. She will be moved to the RCU (respiratory care unit) any time now—there are no empty beds yet. The resident didn’t think that she would be released to leave any time too soon (not Thursday). They plan to aggressively get her off the vent in the next few days. But I know her level of alertness affects her ability to breathe on her own. I have to remember to bring in the boots/splints that she had at the facility because she hasn’t had them in a week now. The Occupational Therapist asked for the boots last week and I forgot to bring them in! I sent myself a voice message to do so.
Dad, Aunt Carol and I also visited 2 of the facilities we saw the other day along with another new facility. The facility we loved best, with the homey feeling, didn't feel so homey today. I still liked it, but I definitely didn't have the same feeling I had on Sunday. The was no respiratory therapist on duty to talk to us even though it was only 3:30 p.m. Mom will NOT get any therapies at any of the facilities we visited unless she is able to participate on her own. One facility boasted about their vent weaning success rate and at another facility, the respiratory therapist spoke to us (the bigger of the nicer facilities we saw Sunday...not the Willowbrook one!) and told us that after a woman was on a vent for 2 years, she was finally able to be weaned off. We were told similar stories where mom is now too before she went there. None of the facilities have respiratory therapists on duty from 11 p.m. to 7 a.m. --- only RNs who had training in vent care. At one point, Aunt Carol commented that the place mom was previously seems to be not so bad in light of what we saw today (and these were all places to add to the list of possibilities). In the end, I have come to the realization: Know that we live in an imperfect world, but knowledge of that should not hinder us from seeking excellence. It's a difficult decision to make. It is mind boggling.
"Having done all...Stand." Ephesians 6:13
Stuff about our health care system (or maybe just about the places we have experience with or both). The hospital mom is in is noted for its work on people with brain injuries. There is an entire center of the hospital devoted to brain injured people, such as mom for example. However.....things happen no matter where you go, or so it seems. For example, here at this reputable hospital......
-after both the spinal tap and the surgery, no surgeon came to speak to us when the procedures were completed. I had to hunt them down,.
-we were never told which waiting room to wait in following the surgery (we were in the wrong one)
-on 3 separate occasions at the hospital, I have walked into mom's cubicle to find her drenched in liquid (once she was covered in the formula from a leaky G-tube [hmm...didn't the same thing happen at both the facility AND the other hospital she was in prior????], and twice her IV leaked all over her). On 2 of these occasions, the nurses were so busy, I just changed mom's gown myself.
-No one is around EVER to consult with us...to let us know who assessed her or when or what the results of the consults were.... If we are not there at the time, we learn nothing because no one has the answers.
-Assessments are done verbally and quickly with mom---no processing time allotted given her head injury (the stroke)
-we never met the anesthesiologist before the surgery
These are the highlights. I write them, not to complain or put down any of the surgeons, nurses, aides...at the hospital, nor to criticize the outstanding work they do, but to point out the fact that no matter where you are...there is always a certain level of care that underlies the greater issues involved. What can be learned? Advocate. Make yourself available as much as you are able. Understand that, in these times of budgetary cut backs, understaffing runs rampant sometimes. Realize that sometimes a surgical job well done is the issue to hone in on and not the fact that a patient is a whole being who includes a caring, anxious family. Pick the meat from the bones and don't throw out the baby with the bathwater. Stuff happens. And it happens everywhere!!! So why have I voiced and continue to voice complaints in the past and present, to be heard so that hopefully, someone else can learn or glean from our experience and most of all so that hopefully things that currently exist can change. Though we realize nothing is perfect, we can't ever let that hinder us from searching for perfection. Exist in the balance.
The quest to find a facility.... There is much to consider.
-The opinions of every family member counts
-Each family member is responsible for stating their opinions and advocating strongly about the issues he/she feels are important to the well being of the member who is a patient
-Each family member is responsible to carry out, on their own at times, the issues and tasks that need to be done and not expect another family member to carry out their wishes for them
-Each family member needs to look at him/herself in the end and know that he/she did the best they could possibly do for their loved one given the circumstances in their own lives
AT THIS POINT IN MOM'S RECOVERY --- she is NOT able to follow a command and is on a vent. The vent greatly limits our options in reference to available facilities to place mom (only 2 facilities in our county and 5 in the other close county...we could go to the city but not much there either).
-Goal #1 is to get mom off the vent (then she can go anywhere)
- Goal #2 is to get mom to consistently follow commands (no following commands but off a vent still equals no therapies---physical, occupational, speech). Just because mom is of the vent, doesn't mean mom automatically gets therapies.
At this point in mom's recovery, given her above circumstances, her recovery depends on US...her family. WE have to work on her therapeutically---physically, occupationally, linguistically and cognitively. WE, her family, need to be present. This affects the location of the facility. If the facility is too far, some family members will not be able to come to work with mom as often as we do now. As long as mom can't follow a command, or is not able to have the stamina to withstand 6-8 hours of therapy, she will not qualify for aggressive rehabilitation.
-if we put mom in a new facility, emotionally this would give us perhaps a new sense of hope-we would look at a new facility like a new beginning, starting over with new people
-The negative side to a new facility is that there is no familiarity. The people in the current facility mom is in know us and mom, we have freedom to bring our tools to work with mom there, we have established boundaries there both for us and the people who work in the facility, we can visit 24 hours a day, we know who and what we are up against in the current facility and how to negotiate their system. A new facility could be much better or much worse...there is the element of the unknown.
-The patient to nurse (RN and LPN) at the current facility is greater than elsewhere (including the aides
-If we have 4 people in a room (one facility we like has this set up), then the environment will be noisy and distracting in reference to working with mom. A person recovering from a stroke needs no distractions in order to concentrate.
-If we change facilities, mom will have a new hospital to have scans done
-If we change facilities, mom will have a new neurologist (we love the neurologist she has now)
Mom's day was a sleepy one, unfortunately. Anthony saw mom today and mom slept the whole time. Even when he tried to open her eyes, she was totally out of it and sleepy. The respiratory therapists said mom's numbers look good. Mom will be moved, hopefully, to the RCU any time now to be worked on for aggressive vent weaning. Every time mom is taken totally off the vent---every day since she arrived at the hospital, she is not able to breathe on her own. Right now, mom is breathing mostly on her own with a little back-up from the vent. Mom is grimacing alot but not waking up.
The resident told dad, Aunt Carol and I that mom hasn't been coughing since the shunt is in, and hasn't had any secretions since the shunt is in (during suctioning). The CAT Scan looked good and the ventricles of the brain are beginning to shrink slightly which is good because it means there is less fluid on the brain. I had the impression that they were hoping for more shrinkage than what they saw so far. I asked if the ventricles can shrink more and was told yes which would be good. The resident had hoped to release mom on Thursday when she finished both of her antibiotics but mom is not progressing as quickly as they would like and have hoped. She is progressing and followed some commands, but not at the spend he hoped she would.. The resident said mom's sleepiness could be due to the trauma on the brain from the surgery and due to the anesthesia as well. She smiled broadly when she saw Aunt Carol. She smiled as we spoke to her but you could see that she had a hard time keeping her eyes open. She was fighting to keep them open. She also finished a line of a silly song again and smiled. She grimaced a lot on and off too as she slept. Frequently, mom would lift her head off the pillow which is good. The nurse said that the sleepiness is typical sometimes and that she did follow some commands earlier in the day. The resident said that they had hoped and expected to see a dramatic change in her affect based on the difference in her after the spinal tap but that it could take time. The resident said that mom will be here at the hospital a while longer since she isn’t as alert as they had expected. We were told that mom is breathing very well with minimal support from the vent when needed. Otherwise, she is breathing on the CPAP mode of the vent. They plan to change her trach cuff in the near future. She will be moved to the RCU (respiratory care unit) any time now—there are no empty beds yet. The resident didn’t think that she would be released to leave any time too soon (not Thursday). They plan to aggressively get her off the vent in the next few days. But I know her level of alertness affects her ability to breathe on her own. I have to remember to bring in the boots/splints that she had at the facility because she hasn’t had them in a week now. The Occupational Therapist asked for the boots last week and I forgot to bring them in! I sent myself a voice message to do so.
Dad, Aunt Carol and I also visited 2 of the facilities we saw the other day along with another new facility. The facility we loved best, with the homey feeling, didn't feel so homey today. I still liked it, but I definitely didn't have the same feeling I had on Sunday. The was no respiratory therapist on duty to talk to us even though it was only 3:30 p.m. Mom will NOT get any therapies at any of the facilities we visited unless she is able to participate on her own. One facility boasted about their vent weaning success rate and at another facility, the respiratory therapist spoke to us (the bigger of the nicer facilities we saw Sunday...not the Willowbrook one!) and told us that after a woman was on a vent for 2 years, she was finally able to be weaned off. We were told similar stories where mom is now too before she went there. None of the facilities have respiratory therapists on duty from 11 p.m. to 7 a.m. --- only RNs who had training in vent care. At one point, Aunt Carol commented that the place mom was previously seems to be not so bad in light of what we saw today (and these were all places to add to the list of possibilities). In the end, I have come to the realization: Know that we live in an imperfect world, but knowledge of that should not hinder us from seeking excellence. It's a difficult decision to make. It is mind boggling.
"Having done all...Stand." Ephesians 6:13
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