Mom was moved to the hospital around 1:20 p.m. and arrived there at 3:00 p.m. She was in good spirits and wide awake. Looking all around outside (before getting into the ambulance)… Once she was there, the team assessed her thoroughly (hours long). The PA (physician’s assistant) recognized mom from last year. They pulled up her file from last year too. They interviewed us regarding mom’s health/medical history… We told the PA about mom having been eating a mechanical soft diet and the PA commented that mom is not on the proper trach cuff for that and that the cuff she has can increase the chance of aspiration! The PA said the cuff could be changed while mom is here. The PA said the intermittent awake/alert/asleep/out cycle mom has shown is not indicative of fluid on the brain….fluid on the brain shows a more subtle, but steady decline. The PA said blood work will show what the underlying cause could be for the cycle we are seeing (a urinary tract infection was mentioned). The PA said getting mom off the G-tube (feeding tube) doesn’t seem like it will be a problem but that will be determined after the shunt surgery. The PA took the CD of mom’s CAT Scans for the team to view. We told the PA to send all information to mom’s neurologist in addition to the facility. We also asked the PA about getting mom off the vent. The PA said mom looks very alert today and with it and seemed to be breathing really well on her own---so getting her off the vent is a possibility!!!!! The PA said that mom’s volume as she breathed looked great! The PA said that mom’s abilities would be assessed after the surgery. The review of the CAT Scan would determine how soon mom needs the shunt.
At the facility earlier, the building administrator came to see mom off. It was like a party. So many CNAs, therapists, nurses…came to kiss mom goodbye, say a prayer, wish us well. There were many hugs and kisses and cheers of joy that mom was finally on her way to the hospital. The building administrator said that there is a 2 day bed hold for mom currently but that he’d hold it until Friday and then he said he’d “work with us.” This means that mom’s bed and room would only be held a few days…after that, it’s another room change… The administrator also said, “Hopefully, she will be able to come back here.” This means that if there aren’t any beds open/empty when mom is ready to return to the facility, then she would have to go to another facility! If mom comes off the trach/vent…she won’t go back there anyway. We would move her to an aggressive rehabilitation center.
Mom was quiet while we visited her at the hospital. She coughed a lot and needed a lot of suctioning. She was sleepy but wanted to be awake with us because she would try to stay awake or to keep her eyes open but couldn’t always do that. After dad, Anthony and I left, Claudia and John came to see mom tonight. Mom was the same. They were told that mom’s surgery will probably be tomorrow but that they won’t know for sure until tomorrow. Mom’s surgery will be between other people’s surgeries---an emergency patient came in tonight which threw the schedule off a bit. There is a chance that mom’s surgery won’t be until Thursday. However, our neurosurgeon goes on vacation on Thursday so his associate will do the procedure if it takes place on Thursday. If the surgery is on Wednesday, tomorrow, the head neurosurgeon will perform it. I will be at the hospital tomorrow at 9 a.m. to find everything out.
For information about visiting mom, e-mail me at kgranelli@aol.com.
"My help comes from the LORD, the Maker of heaven and earth." Psalm 121:2
Tuesday, May 31, 2011
Mom Update, Early Midday May 31, 2011, Tuesday
Please pray. And...if any of my friends at SJC are reading this e-mail now---I am supposed to be a "greeter" for graduation....I can't be there...greet if you feel led to...or just let SKD know where I am! Thanks!
Claudia began the day with mom this morning. She straightened mom up in the bed and got her ready for the day. Mom had a lot of breathing issues this morning. Coughing like crazy and in need of suctioning and changing of the trach tube 3 times in 45 minutes which is excessive. Mom also appeared to be laboring to breath but the vent settings all had good readings. The respiratory person said mom is breathing OK with assistance from the vent. The therapist said the labored breathing looks like hyperventilation and gave mom a breathing treatment. The vent is set on SMIV 8. Mom's chest moves a lot with the breathing. Mom was sleepy and falling asleep but fighting to stay awake because she looked like she wanted to interact but was too sleepy. When she was awake, mom was talkative. Once, when Claudia turned away from mom for a second, mom had grabbed her trach line tightly and it took Claudia a good 2 minutes to get mom to let go of it. The supervisory nurse came in to do the quarterly behavioral review (meaning to check if mom still needs the mitts). Luckily, Claudia was there because the last time they did this, they took mom's mitts off and left her unattended!!!!!! Claudia told the nurse that mom had grabbed the trach line tightly and that mom still needs the mitts, even though we wish she didn't. The supervisory nurse asked permission to count that as their 15 minute review and Claudia said yes. Mom's mitts will remain on her for another 3 months when not attended. Mom is still on the feeding tube as well. Claudia squeezed mom's knee and asked how her muscles were which is something our grandpa did and said to us as children. Claudia asked mom who says that and mom mouthed, "My father." Mom was talkative when awake. Claudia tried to draw with mom but mom mouthed, "I can't do this" and became frustrated and refused to even cooperate with Claudia doing hand over hand assistance. Claudia explained that the crayons we use are not meant to be insulting but to build her strength in her hands. Crayons take more pressure to make a mark. Claudia took out the ball that Ava bought her and bounced it and mom watched intently. Claudia gave mom the ball and mom held it palm upward and tried to throw it. When Claudia asked her if she wanted to throw it, mom said, " No, bounce it" so Claudia did that for mom over and over and they laughed. Mom was upset that Claudia was leaving her for work. Mom shut down and wouldn't talk to Claudia. Claudia said, "I love you" and mom shook her head no. Claudia asked, "Do you love me?" and mom said, "No" then Claudia kissed her good bye and mom kissed her back and said I love you too.
Anthony just called me---it is 12:05 p.m. and I was on my way to graduation (exactly where I was last year when mom had the aneurysm burst and then the stroke...). The hospital HAS A BED FOR MOM!!!!! Dad is a nervous wreck. Pray for us all....how weird it is to be back at the same hospital exactly 1 year later to the day....
Will update again tonight.
"Into Your Hands I commit my spirit" Psalm 31:5
Claudia began the day with mom this morning. She straightened mom up in the bed and got her ready for the day. Mom had a lot of breathing issues this morning. Coughing like crazy and in need of suctioning and changing of the trach tube 3 times in 45 minutes which is excessive. Mom also appeared to be laboring to breath but the vent settings all had good readings. The respiratory person said mom is breathing OK with assistance from the vent. The therapist said the labored breathing looks like hyperventilation and gave mom a breathing treatment. The vent is set on SMIV 8. Mom's chest moves a lot with the breathing. Mom was sleepy and falling asleep but fighting to stay awake because she looked like she wanted to interact but was too sleepy. When she was awake, mom was talkative. Once, when Claudia turned away from mom for a second, mom had grabbed her trach line tightly and it took Claudia a good 2 minutes to get mom to let go of it. The supervisory nurse came in to do the quarterly behavioral review (meaning to check if mom still needs the mitts). Luckily, Claudia was there because the last time they did this, they took mom's mitts off and left her unattended!!!!!! Claudia told the nurse that mom had grabbed the trach line tightly and that mom still needs the mitts, even though we wish she didn't. The supervisory nurse asked permission to count that as their 15 minute review and Claudia said yes. Mom's mitts will remain on her for another 3 months when not attended. Mom is still on the feeding tube as well. Claudia squeezed mom's knee and asked how her muscles were which is something our grandpa did and said to us as children. Claudia asked mom who says that and mom mouthed, "My father." Mom was talkative when awake. Claudia tried to draw with mom but mom mouthed, "I can't do this" and became frustrated and refused to even cooperate with Claudia doing hand over hand assistance. Claudia explained that the crayons we use are not meant to be insulting but to build her strength in her hands. Crayons take more pressure to make a mark. Claudia took out the ball that Ava bought her and bounced it and mom watched intently. Claudia gave mom the ball and mom held it palm upward and tried to throw it. When Claudia asked her if she wanted to throw it, mom said, " No, bounce it" so Claudia did that for mom over and over and they laughed. Mom was upset that Claudia was leaving her for work. Mom shut down and wouldn't talk to Claudia. Claudia said, "I love you" and mom shook her head no. Claudia asked, "Do you love me?" and mom said, "No" then Claudia kissed her good bye and mom kissed her back and said I love you too.
Anthony just called me---it is 12:05 p.m. and I was on my way to graduation (exactly where I was last year when mom had the aneurysm burst and then the stroke...). The hospital HAS A BED FOR MOM!!!!! Dad is a nervous wreck. Pray for us all....how weird it is to be back at the same hospital exactly 1 year later to the day....
Will update again tonight.
"Into Your Hands I commit my spirit" Psalm 31:5
Monday, May 30, 2011
Mom Update, May 30, 2011, Monday
Mom’s update Monday, May 30, 2011
Mom was awake when I arrived this morning. I had to fix her in the bed. She was hanging off the end of the bed and slumped over to the right. She looked uncomfortable. I also noticed bubbles and foam around her neck. I asked a CNA to help me to straighten and fix her in the bed before I raised the bed up. I do this most mornings so that when I raise the bed she is “bending” at the waist. I also mentioned the bubbles and the CNA suctioned around the trach. I asked the respiratory therapist to come in and she said that happens when the cuff needs to be expanded. They do this by using a syringe to blow air in the cuff to tighten the fit of the cuff in the trach. Once she was all set I put the lap desk on her lap and put a computer on the desk. I brought Carol Burnett DVD’s with me today. I asked her if she liked Carol Burnett and she shook her head “yes”. I then put the DVD on and she attended to the DVD laughing now and then to the skits. I sat next to her doing paper work. She nodded off.
The aides then came in to wash and dress her. When I came back in she was coughing a lot so they had to suction her. She then fell a sleep for a while. When she woke up I put food network on and gave her a “Woman’s Day” magazine. She held the magazine and looked at the pages and then fell asleep.
Dad came and sat with mom. She was sleeping. Terry also came and Terry said she had a sleepy afternoon, but the times she was awake they interacted and talked. Terry said at one point dad said to mom, “Give me a hug Dot” and mom lifted her arms to hug dad. Mom was put back in bed and Terry said she was awake for a short time and that it looked like she was fighting to stay awake. Terry said to her, “Mom shut your eyes and sleep if you have to.” Mom did and fell asleep until Terry left for the night.
One of the hardest things in the world to do is to “Let go and let God,” giving your problems to God and let him take care of them and you. We are all trying, but it is getting harder and harder, especially when we have such a sleepy day like today.
Please keep our family in your prayers as we approach a year June 1st. This week will be difficult for us all.
I know I don’t even have to ask… pray for a bed at North Shore!
Peace and Love,
~Claud
Mom was awake when I arrived this morning. I had to fix her in the bed. She was hanging off the end of the bed and slumped over to the right. She looked uncomfortable. I also noticed bubbles and foam around her neck. I asked a CNA to help me to straighten and fix her in the bed before I raised the bed up. I do this most mornings so that when I raise the bed she is “bending” at the waist. I also mentioned the bubbles and the CNA suctioned around the trach. I asked the respiratory therapist to come in and she said that happens when the cuff needs to be expanded. They do this by using a syringe to blow air in the cuff to tighten the fit of the cuff in the trach. Once she was all set I put the lap desk on her lap and put a computer on the desk. I brought Carol Burnett DVD’s with me today. I asked her if she liked Carol Burnett and she shook her head “yes”. I then put the DVD on and she attended to the DVD laughing now and then to the skits. I sat next to her doing paper work. She nodded off.
The aides then came in to wash and dress her. When I came back in she was coughing a lot so they had to suction her. She then fell a sleep for a while. When she woke up I put food network on and gave her a “Woman’s Day” magazine. She held the magazine and looked at the pages and then fell asleep.
Dad came and sat with mom. She was sleeping. Terry also came and Terry said she had a sleepy afternoon, but the times she was awake they interacted and talked. Terry said at one point dad said to mom, “Give me a hug Dot” and mom lifted her arms to hug dad. Mom was put back in bed and Terry said she was awake for a short time and that it looked like she was fighting to stay awake. Terry said to her, “Mom shut your eyes and sleep if you have to.” Mom did and fell asleep until Terry left for the night.
One of the hardest things in the world to do is to “Let go and let God,” giving your problems to God and let him take care of them and you. We are all trying, but it is getting harder and harder, especially when we have such a sleepy day like today.
Please keep our family in your prayers as we approach a year June 1st. This week will be difficult for us all.
I know I don’t even have to ask… pray for a bed at North Shore!
Peace and Love,
~Claud
Mom Update, May 29, 2011, Sunday
Mom’s update May 29th, 2011
I started the day with mom. When I walked into the room she was laying in bed with her eyes closed but she had a big smile on her face. She was in a great mood. How wacky that she slept all day yesterday and today she was wide awake! We watched the movie “Shall We Dance” on Ava’s laptop. I put in right in her lap so she could see it. She was very into the movie. After the movie I gave her the IPAD and she played around a little but wasn’t really into it. I then put the wii on. We played wii resort. I pushed the TV and the dresser closer to her bed so she could see it. After we played wii I gave her a scissor and we cut hand over hand. She started to reach for my pen so I asked her if she wanted to write and she said yes. I took out a book of mazes and we did one maze hand over hand first in red then in blue, etc. She was very attentive.
I left and dad came next. Mom was awake for dad.
Dad had her play with the pegs and pegboard. Mom’s friends Maureen and Flo came to see mom. Mom smiled when she saw them. They talked and visited for a while. When her friends left mom took a nap for a half hour and she and dad watched a movie. They put mom back in bed and she was in a great mood and “warmed up”
to dad (dad’s words).
Terry came and spent the rest of the night with mom and put her to bed. Mom eventually fell asleep before dad and Terry left for the night.
The head nurse spoke to me this morning and told me that she spoke to mom’s neurologist. He said he is trying to get mom a bed. The hospital told the neurologist that ER patients take precedence over scheduled procedures.
Please keep praying!
Peace and love,
~Claudia
I started the day with mom. When I walked into the room she was laying in bed with her eyes closed but she had a big smile on her face. She was in a great mood. How wacky that she slept all day yesterday and today she was wide awake! We watched the movie “Shall We Dance” on Ava’s laptop. I put in right in her lap so she could see it. She was very into the movie. After the movie I gave her the IPAD and she played around a little but wasn’t really into it. I then put the wii on. We played wii resort. I pushed the TV and the dresser closer to her bed so she could see it. After we played wii I gave her a scissor and we cut hand over hand. She started to reach for my pen so I asked her if she wanted to write and she said yes. I took out a book of mazes and we did one maze hand over hand first in red then in blue, etc. She was very attentive.
I left and dad came next. Mom was awake for dad.
Dad had her play with the pegs and pegboard. Mom’s friends Maureen and Flo came to see mom. Mom smiled when she saw them. They talked and visited for a while. When her friends left mom took a nap for a half hour and she and dad watched a movie. They put mom back in bed and she was in a great mood and “warmed up”
to dad (dad’s words).
Terry came and spent the rest of the night with mom and put her to bed. Mom eventually fell asleep before dad and Terry left for the night.
The head nurse spoke to me this morning and told me that she spoke to mom’s neurologist. He said he is trying to get mom a bed. The hospital told the neurologist that ER patients take precedence over scheduled procedures.
Please keep praying!
Peace and love,
~Claudia
Mom Update, May 28, 2011, Saturday
Let me start out by saying sorry I didn't write the blog yesterday, but there really isn't much to write.
I started the day withmom. I received a call earlier in the week from my mom's cousin Rita who wanted to see mom. I told her I would bring her Saturday morning. We both entered the room and the lights were out, shades down and mom laying flat (lower than usual). Right then I knew her two favorite CNA's were not on duty today! I put in her hearing aides and put her glasses on and raised the bed. She was out like a light. I tried to wake her by washing her face but no luck. She would not wake up. I also tried opening her eyes but they rolled back in her head and she fell a sleep. I asked the respiratory therapist if everything was OK with her breathing and he said it was the same. I had her awake for a few moments but not for too long. I plugged in the ipad and played a TV show for her with her head phones. She opened her eyes and looked at the Ipad for only a few intermittent moments. We left after a few hours.
Dad and Terry reported the same thing. Mom was very sleepy today.
Please pray for a bed to open up in the NSICU at North Shore.
Peace and Love,
Claudia
I started the day withmom. I received a call earlier in the week from my mom's cousin Rita who wanted to see mom. I told her I would bring her Saturday morning. We both entered the room and the lights were out, shades down and mom laying flat (lower than usual). Right then I knew her two favorite CNA's were not on duty today! I put in her hearing aides and put her glasses on and raised the bed. She was out like a light. I tried to wake her by washing her face but no luck. She would not wake up. I also tried opening her eyes but they rolled back in her head and she fell a sleep. I asked the respiratory therapist if everything was OK with her breathing and he said it was the same. I had her awake for a few moments but not for too long. I plugged in the ipad and played a TV show for her with her head phones. She opened her eyes and looked at the Ipad for only a few intermittent moments. We left after a few hours.
Dad and Terry reported the same thing. Mom was very sleepy today.
Please pray for a bed to open up in the NSICU at North Shore.
Peace and Love,
Claudia
Mom Update, May 27, 2011, Friday
Mom’s update May 27, 2011
Mom was very alert this morning. I sat her up in the bed and did our usual routine of the calendar and the date. Whoever goes in the morning goes over what day it is, what month and year. I asked her to read the month and she did. I asked her to tell me the day of the week (she read it) and then the day (27). She said 21 for 27 but it was very close. She then made an attempt to grab the marker from my hand. I took out a blank wipe off board and she started to make circles on the board. I wrote Dotty and asked her what her name was and she read Dotty. I asked her what her last name was and then I wrote it on the board. She read Gilman. I wrote Claudia, Anthony and Jean on the right side of the board and then Con, Dotty and John on the other side and hand over hand we matched up the people. I then let her write on the board and she circled John and then Con. After a while I Drew the letter E on the blank board. Mom took the marker and drew a very short vertical line down and then a long horizontal line to the right. It looked like a misshapen “L”. She then traced back over the L and made another horizontal line over the bottom one. She then took the marker and from below the vertical line drew up past both lines and then over to the right. The final product was an E. It was amazing to watch how she attacked writing the one letter! After she wrote the letter she fell asleep. Out cold! Then the monitored started to beep like crazy and the respiratory therapist came in. I was afraid that I had pushed her too hard. He said she was ok. I waited for her to wake up and then I left for work.
Anthony came to see mom next. Mom was awake and alert. Anthony drew with her and she drew a lot of circles. Anthony didn’t want to work on her legs today because she was coughing too much. Anthony told her to throw up if she has to and she coughed so much she threw up. A nurse came in and cleaned her up.
Dad came and spent the end of the day with mom. They sat and watched TV and wrote on the wipe off board. Dad brought mom a newspaper and she looked through it for a long time. They held hands and spent time together. Dad stayed until the night and put mom to bed.
What a great day! “To God be the Glory”!
Peace and Love,
~Claudia
Mom was very alert this morning. I sat her up in the bed and did our usual routine of the calendar and the date. Whoever goes in the morning goes over what day it is, what month and year. I asked her to read the month and she did. I asked her to tell me the day of the week (she read it) and then the day (27). She said 21 for 27 but it was very close. She then made an attempt to grab the marker from my hand. I took out a blank wipe off board and she started to make circles on the board. I wrote Dotty and asked her what her name was and she read Dotty. I asked her what her last name was and then I wrote it on the board. She read Gilman. I wrote Claudia, Anthony and Jean on the right side of the board and then Con, Dotty and John on the other side and hand over hand we matched up the people. I then let her write on the board and she circled John and then Con. After a while I Drew the letter E on the blank board. Mom took the marker and drew a very short vertical line down and then a long horizontal line to the right. It looked like a misshapen “L”. She then traced back over the L and made another horizontal line over the bottom one. She then took the marker and from below the vertical line drew up past both lines and then over to the right. The final product was an E. It was amazing to watch how she attacked writing the one letter! After she wrote the letter she fell asleep. Out cold! Then the monitored started to beep like crazy and the respiratory therapist came in. I was afraid that I had pushed her too hard. He said she was ok. I waited for her to wake up and then I left for work.
Anthony came to see mom next. Mom was awake and alert. Anthony drew with her and she drew a lot of circles. Anthony didn’t want to work on her legs today because she was coughing too much. Anthony told her to throw up if she has to and she coughed so much she threw up. A nurse came in and cleaned her up.
Dad came and spent the end of the day with mom. They sat and watched TV and wrote on the wipe off board. Dad brought mom a newspaper and she looked through it for a long time. They held hands and spent time together. Dad stayed until the night and put mom to bed.
What a great day! “To God be the Glory”!
Peace and Love,
~Claudia
Thursday, May 26, 2011
Mom Update, May 26, 2011, Thursday
Still waiting for a bed in the NSICU at North Shore.....frustrating...mom had the CAT Scan 2 weeks ago today. I call the neurosurgeon 1-3 times a day to check in but nothing yet.
Claudia began the morning with mom but mom was sleepy/sleeping. Claudia played, "Good Day Sunshine" by Paul McCartney and sang to mom, who at first was asleep, but then she woke up. Mom said good morning to Claudia. Claudia then sang, "Oh How I Hate to Get Up in the Morning" and asked mom who wrote it saying, "Irving...." and mom replied, "Berlin." Claudia sang a Good Morning medley of songs to mom!! Claudia did the "Sounds Around the Home" CD and they did it together---looking at pictures and listening to the sound the item/object makes and labeling it. They made it almost to the end but mom began to answer incorrectly, seemingly on purpose. She was able to pick the right pictures and label them in the beginning. She would sometimes need a phonemic cue or a direct answer to repeat. Mom made a joke about something and laughed but Claudia didn't hear what she said but laughed too. Claudia left a magazine open on the bed tray for mom to look at.
Anthony came to visit with mom next. He talked to her and worked on her legs and arms. She pushed strongly against his hand with her right leg and slightly with her left. I tried it next and she did the same for me. She really concentrates on what she is trying to do…sometimes, her hands tighten before her leg does. Anthony showed her the METS book that Claudia made for her. She looked intently as he read. Mom seems dazed today. I asked her if she was tired and she nodded her head yes. As soon as Anthony left, I turned for a second to move the tray table and luckily I looked back because mom had grabbed her trach line using her whole fist, crossing her body midline with her right hand to do it. I had a hard time getting her to release the line. She had grabbed it at the tubing to the left side of her. When I took her hand off, I said, “You know you aren’t supposed to touch that.” She looked at me coyly and said out loud, “Oh, I didn’t know that.” Shortly after this episode, she fell asleep. When she woke, we did a crossword puzzle:
Clue: “an Irish tavern. Starts with a P…” Mom: “Pub”
Clue: “A saying – ‘All kidding___” Mom: “Aside”
Clue: “Leaning Tower of ___” Mom: “Pizza” I asked her to spell it and she did!
Clue: “Length times width equals what? Starts with A…areeee” Mom: “Area”
Clue: “Mardi__” Mom: “Gras”
Clue: “Footwear for skiers.You were this instead of shoes in the snow” Mom: “boots”
Clue: “What’s in the middle of a peach? You can plant it and it grows into a tree” Mom: “pit”
Clue:”Hoisery Mishap…starts with an SN…” Mom: “Snag”
Clue: “Go out on a ____. Starts with a D….. What does D-A-T-E spell?” Mom: “Date”
Clue: “A really short skirt…starts with M… Famous in the 60s” Mom: “Mini”
Clue: “After a bath, you put on talcum….” Mom: “Powder”
She fell asleep again at this point. When she woke up, she didn’t seem like she wanted to continue with the crossword…she ignored me and was quiet. I asked if she wanted to listen to music, she made a face. I asked if she wanted to write, or read…she shook her head no. I asked her if she wanted to dance with me, she raised her eyebrows and made a disgusted face! I grabbed her hands and swayed with her and said we could chair dance and she laughed. She was changed and moved to the chair and then we did some writing/drawing on the dry erase board using dry erase markers. I made a circle and mom couldn’t come near to tracing it at first, but then she did it!! Her approximations became closer and closer as she practiced tracing the circle. She made huge random circular motions when I gave her the marker and a blank board. At one point, she began to scribble on her posie and hand and when I told her not to do it, she said, “Excuuuse me” in an indignant voice. She is funny sometimes. Her CNAs all said they love her like their own mother. They commented on the work we do with her and how much they all want her to leave her one day. Mom and I did the counting app on the IPAD next. She spent a long time on the crosswords and the drawing…hours. We also played a word game on the IPAD. Random letters appear and then you unscramble them into a word. It appeared to be too difficult for mom to do but we did it together. Whenever I spelled a word orally with no visual prompt, mom was able to tell me the word I spelled: A-B-O-U-T, C-A-N, `B-E-T-T-E-R. I asked her what another word spelled and mom said, “Don’t keep asking me to say it.” We played TIC TAC TOE on the IPAD next and chatted. I asked her what my name is (she doesn’t know) and she said, “Dotty Gilman.” After about 2 hours of the IPAD, mom pushed it away and said, “It’s too much.” So we stopped. At the same time, the nurse came in to start mom’s feeding tube feeding. Mom became very agitated after that. I kept asking her if she felt OK and she would shake her head no and repeat, “x-y-z” over and over again. This went on and off for about 1/2 an hour. She was calmer by the time I left though.
Dad came and mom looked pleased to see him. At one point, it seemed like she said, "I want to go home" and another point, "Don't leave, stay with me."
"Stand firm. Let nothing move you." 1 Corinthians 15:58
Claudia began the morning with mom but mom was sleepy/sleeping. Claudia played, "Good Day Sunshine" by Paul McCartney and sang to mom, who at first was asleep, but then she woke up. Mom said good morning to Claudia. Claudia then sang, "Oh How I Hate to Get Up in the Morning" and asked mom who wrote it saying, "Irving...." and mom replied, "Berlin." Claudia sang a Good Morning medley of songs to mom!! Claudia did the "Sounds Around the Home" CD and they did it together---looking at pictures and listening to the sound the item/object makes and labeling it. They made it almost to the end but mom began to answer incorrectly, seemingly on purpose. She was able to pick the right pictures and label them in the beginning. She would sometimes need a phonemic cue or a direct answer to repeat. Mom made a joke about something and laughed but Claudia didn't hear what she said but laughed too. Claudia left a magazine open on the bed tray for mom to look at.
Anthony came to visit with mom next. He talked to her and worked on her legs and arms. She pushed strongly against his hand with her right leg and slightly with her left. I tried it next and she did the same for me. She really concentrates on what she is trying to do…sometimes, her hands tighten before her leg does. Anthony showed her the METS book that Claudia made for her. She looked intently as he read. Mom seems dazed today. I asked her if she was tired and she nodded her head yes. As soon as Anthony left, I turned for a second to move the tray table and luckily I looked back because mom had grabbed her trach line using her whole fist, crossing her body midline with her right hand to do it. I had a hard time getting her to release the line. She had grabbed it at the tubing to the left side of her. When I took her hand off, I said, “You know you aren’t supposed to touch that.” She looked at me coyly and said out loud, “Oh, I didn’t know that.” Shortly after this episode, she fell asleep. When she woke, we did a crossword puzzle:
Clue: “an Irish tavern. Starts with a P…” Mom: “Pub”
Clue: “A saying – ‘All kidding___” Mom: “Aside”
Clue: “Leaning Tower of ___” Mom: “Pizza” I asked her to spell it and she did!
Clue: “Length times width equals what? Starts with A…areeee” Mom: “Area”
Clue: “Mardi__” Mom: “Gras”
Clue: “Footwear for skiers.You were this instead of shoes in the snow” Mom: “boots”
Clue: “What’s in the middle of a peach? You can plant it and it grows into a tree” Mom: “pit”
Clue:”Hoisery Mishap…starts with an SN…” Mom: “Snag”
Clue: “Go out on a ____. Starts with a D….. What does D-A-T-E spell?” Mom: “Date”
Clue: “A really short skirt…starts with M… Famous in the 60s” Mom: “Mini”
Clue: “After a bath, you put on talcum….” Mom: “Powder”
She fell asleep again at this point. When she woke up, she didn’t seem like she wanted to continue with the crossword…she ignored me and was quiet. I asked if she wanted to listen to music, she made a face. I asked if she wanted to write, or read…she shook her head no. I asked her if she wanted to dance with me, she raised her eyebrows and made a disgusted face! I grabbed her hands and swayed with her and said we could chair dance and she laughed. She was changed and moved to the chair and then we did some writing/drawing on the dry erase board using dry erase markers. I made a circle and mom couldn’t come near to tracing it at first, but then she did it!! Her approximations became closer and closer as she practiced tracing the circle. She made huge random circular motions when I gave her the marker and a blank board. At one point, she began to scribble on her posie and hand and when I told her not to do it, she said, “Excuuuse me” in an indignant voice. She is funny sometimes. Her CNAs all said they love her like their own mother. They commented on the work we do with her and how much they all want her to leave her one day. Mom and I did the counting app on the IPAD next. She spent a long time on the crosswords and the drawing…hours. We also played a word game on the IPAD. Random letters appear and then you unscramble them into a word. It appeared to be too difficult for mom to do but we did it together. Whenever I spelled a word orally with no visual prompt, mom was able to tell me the word I spelled: A-B-O-U-T, C-A-N, `B-E-T-T-E-R. I asked her what another word spelled and mom said, “Don’t keep asking me to say it.” We played TIC TAC TOE on the IPAD next and chatted. I asked her what my name is (she doesn’t know) and she said, “Dotty Gilman.” After about 2 hours of the IPAD, mom pushed it away and said, “It’s too much.” So we stopped. At the same time, the nurse came in to start mom’s feeding tube feeding. Mom became very agitated after that. I kept asking her if she felt OK and she would shake her head no and repeat, “x-y-z” over and over again. This went on and off for about 1/2 an hour. She was calmer by the time I left though.
Dad came and mom looked pleased to see him. At one point, it seemed like she said, "I want to go home" and another point, "Don't leave, stay with me."
"Stand firm. Let nothing move you." 1 Corinthians 15:58
Wednesday, May 25, 2011
Mom Update, May 25, 2011, Wednesday
Claudia began the day with mom this morning. Mom was wide awake and Claudia sang, 'Good Morning to You" to mom and said, "Good Morning, morning glory" and mom smiled and was happy and in a great mood. Claudia tried to do the Sounds Around the Home CD with mom but the CD player is broken so they just looked at the pictures and labeled them but mom fell asleep. She quickly woke up and was awake the whole time. Mom grabbed Claudia's shirt and when Claudia asked mom if she liked Claudia's shirt, mom said yes. Claudia told mom she has to buy the same shirt for Aunt Sophie now. Mom looked confused so Claudia told her all about how Aunt Sophie loves the clothes Claudia and I wear and insists we buy her the same clothes. Claudia said, "That's what we always wanted, was to look like a 93 year old lady!!! and then Kathy and I will wear the same clothes as Aunt Sophie!" Mom laughed hysterically through all this!! They played with some letter blocks I bought for mom. They made words with the blocks. Mom kept saying, "I don't know" when Claudia would ask her to read the word. Claudia assured her that she knew how to read them. If Claudia pushed mom enough, she read them. Claudia then adapted the activity to make a game format where Claudia would name a person, ask a question about the person (a silly question) and then put a word together that answered the question. After mom gave one silly answer, she repeated it for every answer (very childlike). They laughed and laughed!!! Then, they read the vocabulary book that Flo and Maureen gave her for Christmas. Claudia left mom with a half-completed crossword puzzle on the desk on the bed figuring that mom could read it and possibly solve some of it in her head.
Anthony came to see mom next and reported that she was awake, alert, and very happy. She had just finished her shower. Anthony worked on her legs and mom did great with right leg and pushed hard against his hand, and somewhat well on the left leg. She was in her wheelchair and he sat next to her on bed and she stroked his hair and arm. They talked and laughed a lot. The facility doctor came in to see her and asked why she wasn't in North Shore yet. He didn't know she has a cough. Anthony said she didn't cough the entire 2 hours of his visit!!
Dad came next to see mom. Dad said that mom was awake and alert and talkative with him too. By the time I arrived, mom was asleep. Dad and I sat on either side of her and held her hands as she slept and we watched Oprah’s last show. Mom woke up a few times briefly and smiled at me and then went back to sleep. After mom was put back into bed, she woke up and was very alert. She kissed me over and over and gave me a huge hug. She seems better than I have seen her in a long time. We did the IPAD and mom used the stylus to draw on the DRAWING PAD app. She hardly did any coughing today!! God is good---all the prayers must be working.
When Claudia arrived tonight to be with mom she was asleep at first. When mom woke, Claudia showed mom all the graduation pictures and talked to mom the whole time naming people…mom listened and was focused but didn’t talk. Claudia then did the IPAD with mom but Claudia did all the programs and mom watched and didn’t participate. Mom fell asleep then and looked really exhausted. Claudia prepared her for bed and tucked her in.
This is a quote about the meaning of the word Pentecost from Sister Mary Ann that I would like to share: "There's a definition of Paraclete that I am reminded about as I read our description of sitting beside your Mom in these days. The meaning of Paraclete is "one who consoles or comforts, one who encourages or uplifts; hence refreshes, and/or who intercedes on our behalf as an advocate in court. It's been said that another meaning is 'to sit at one's side'..."
Anthony came to see mom next and reported that she was awake, alert, and very happy. She had just finished her shower. Anthony worked on her legs and mom did great with right leg and pushed hard against his hand, and somewhat well on the left leg. She was in her wheelchair and he sat next to her on bed and she stroked his hair and arm. They talked and laughed a lot. The facility doctor came in to see her and asked why she wasn't in North Shore yet. He didn't know she has a cough. Anthony said she didn't cough the entire 2 hours of his visit!!
Dad came next to see mom. Dad said that mom was awake and alert and talkative with him too. By the time I arrived, mom was asleep. Dad and I sat on either side of her and held her hands as she slept and we watched Oprah’s last show. Mom woke up a few times briefly and smiled at me and then went back to sleep. After mom was put back into bed, she woke up and was very alert. She kissed me over and over and gave me a huge hug. She seems better than I have seen her in a long time. We did the IPAD and mom used the stylus to draw on the DRAWING PAD app. She hardly did any coughing today!! God is good---all the prayers must be working.
When Claudia arrived tonight to be with mom she was asleep at first. When mom woke, Claudia showed mom all the graduation pictures and talked to mom the whole time naming people…mom listened and was focused but didn’t talk. Claudia then did the IPAD with mom but Claudia did all the programs and mom watched and didn’t participate. Mom fell asleep then and looked really exhausted. Claudia prepared her for bed and tucked her in.
This is a quote about the meaning of the word Pentecost from Sister Mary Ann that I would like to share: "There's a definition of Paraclete that I am reminded about as I read our description of sitting beside your Mom in these days. The meaning of Paraclete is "one who consoles or comforts, one who encourages or uplifts; hence refreshes, and/or who intercedes on our behalf as an advocate in court. It's been said that another meaning is 'to sit at one's side'..."
Tuesday, May 24, 2011
Mom Update, May 24, 2011, Tuesday
Claudia began the day with mom and found her asleep and sleepy, though mom did smile at her and seem happy when she finally woke up briefly. It took Claudia and the CNAs to try to rouse mom. It took a lot to wake her momentarily.
Mom was being bathed and washed when I arrived. She was initially awake and smiled at me but then went out like a light after she was settled. The CNAs reported that she is coughing a lot still. Everyone notices the change in mom…quieter, struggling at times (physically---cognitively, she is still as much there as before the excess fluid on the brain). Quite often, mom is drenched in sweat from coughing. Basically, we just sit with mom and keep her company or hold her hand when she coughs (she looks for this comfort). We are no longer doing any aggressive therapies like physical therapy, other than that which involves talking and thinking (crosswords…). I noticed today that mom has a new vent. I asked the respiratory therapist about it and was told the vent was replaced today…no reason as to why was reported. Mom slept a lot during my visit with her. She would wake a bit and smile or looked at me like she saw a ghost and then go back to sleep. I cut her hair…it was really long. Combing mom’s hair and the gentle pull of the comb through her hair is relaxing to mom. As soon as Dad joined us, mom woke and smiled at him. She remained awake for his entire visit. We talked for a while and mom was very focused and mouthed answers and comments often. Mom overheard someone ask about when she would be at the hospital and mom began to ask me about it. She asked who was going to the hospital and why she was going and for how long. She commented that it seemed like a good idea to her. Dad sat next to mom once she was put into her wheelchair and talked to her. She held his hand and stared at him intently. Good news!! The sore on mom’s bottom/lower back is almost gone!!! It is closed and only a little bit red with a few scares which will probably heal soon!!! I took out the colored pencils and a coloring book and mom grabbed a pencil to write with but didn’t have the strength to make a mark on the page.
I left because Lenny came home from work with a temp (never a dull moment! LOL). John came tonight to relieve dad. He said that mom was very connected and talkative and awake and alert. The best he has seen mom in a long time. He drew pictures and she said, "Beautiful." They had a great visit. However......earlier in the day (11:00 a.m.) I felt mom's mitts and posies and they were drenched from sweat so I asked the CNA to put them all in the wash and get her some new ones...mom's hands stunk from the sweat created in and by them. Around 2:30, I asked one of the nurses to find some mitts and posies....for later. Well....here it is 8:00 and I get a phone call from dad saying that when John left, no posies or mitts could be found for mom!!! Thank God that one of her best CNAs is on duty until 11:00 p.m. and this CNA is going to sit by mom's side until the mitts and posies appear from the laundry. Needless to say, I am on my way to assess the situation. Mom tried to pull out her trach 4 times this afternoon...I had to pry her fingers off it each time...wrestling her the whole time. I may have to sleep there tonight to be sure she doesn't pull the trach out. As I said before, "Never a dull moment." PTL
"Commit your work to the Lord and your plans will be established" Proverbs 16:3
PS No bed at North Shore yet....no word from the neurologist yet either...............
Mom was being bathed and washed when I arrived. She was initially awake and smiled at me but then went out like a light after she was settled. The CNAs reported that she is coughing a lot still. Everyone notices the change in mom…quieter, struggling at times (physically---cognitively, she is still as much there as before the excess fluid on the brain). Quite often, mom is drenched in sweat from coughing. Basically, we just sit with mom and keep her company or hold her hand when she coughs (she looks for this comfort). We are no longer doing any aggressive therapies like physical therapy, other than that which involves talking and thinking (crosswords…). I noticed today that mom has a new vent. I asked the respiratory therapist about it and was told the vent was replaced today…no reason as to why was reported. Mom slept a lot during my visit with her. She would wake a bit and smile or looked at me like she saw a ghost and then go back to sleep. I cut her hair…it was really long. Combing mom’s hair and the gentle pull of the comb through her hair is relaxing to mom. As soon as Dad joined us, mom woke and smiled at him. She remained awake for his entire visit. We talked for a while and mom was very focused and mouthed answers and comments often. Mom overheard someone ask about when she would be at the hospital and mom began to ask me about it. She asked who was going to the hospital and why she was going and for how long. She commented that it seemed like a good idea to her. Dad sat next to mom once she was put into her wheelchair and talked to her. She held his hand and stared at him intently. Good news!! The sore on mom’s bottom/lower back is almost gone!!! It is closed and only a little bit red with a few scares which will probably heal soon!!! I took out the colored pencils and a coloring book and mom grabbed a pencil to write with but didn’t have the strength to make a mark on the page.
I left because Lenny came home from work with a temp (never a dull moment! LOL). John came tonight to relieve dad. He said that mom was very connected and talkative and awake and alert. The best he has seen mom in a long time. He drew pictures and she said, "Beautiful." They had a great visit. However......earlier in the day (11:00 a.m.) I felt mom's mitts and posies and they were drenched from sweat so I asked the CNA to put them all in the wash and get her some new ones...mom's hands stunk from the sweat created in and by them. Around 2:30, I asked one of the nurses to find some mitts and posies....for later. Well....here it is 8:00 and I get a phone call from dad saying that when John left, no posies or mitts could be found for mom!!! Thank God that one of her best CNAs is on duty until 11:00 p.m. and this CNA is going to sit by mom's side until the mitts and posies appear from the laundry. Needless to say, I am on my way to assess the situation. Mom tried to pull out her trach 4 times this afternoon...I had to pry her fingers off it each time...wrestling her the whole time. I may have to sleep there tonight to be sure she doesn't pull the trach out. As I said before, "Never a dull moment." PTL
"Commit your work to the Lord and your plans will be established" Proverbs 16:3
PS No bed at North Shore yet....no word from the neurologist yet either...............
Monday, May 23, 2011
Mom Update, May 23, 2011, Monday
Claudia began the day with mom. Mom was coughing like crazy and needed a suctioning. The head of nursing happened to come in and suctioned mom and realized that mom had alot of thick secretions. Claudia reminded the team about mom having a mucus plug in December. They said mom needs another suction with breathing treatment; however the respiratory therapist had done that minutes before. The respiratory person said mom would be monitored throughout the day closely. Our fear is that mom could be losing strength because she isn't able to cough well or swallow like before. It appears that mom's right hearing aid is not working. Mom was out like a light and difficult to become alert. Claudia opened mom's eyes and mom looked at her and smiled at Claudia. Mom smiled when Claudia washed her face too. The head of respiratory said that mom's breathing levels are very inconsistent these last weeks which is due to the brain.
When I saw mom this morning, she smiled at me broadly as she was so happy to see me and the look had so much love in it. She was alert and talkative but you could see how washed out and tired she was from coughing. She coughed a lot at first. Dad came next with a huge bouquet of lilacs from upstate on our family property. Mom looked at them and mouthed, “How beautiful.” Shortly after that, mom was changed and moved to the wheelchair. Mom’s friends Flo and Maureen came to see her. We all sat and chatted and mom watched each person talk on and off. She took Maureen’s bottle of water after Mom pointed at the bottle and then herself. Maybe she is thirsty?... I had to leave then to take Lenny to the Emergency Room to get his foot and ankle x-rayed because he fell off a ladder at work from the first story roof. Always something. Never a dull moment. It turned out to be a bad bruise on both.....PTL
I spent a great deal of time on hold on the phone today. I called North Shore but still no room. I called back later in the day and still no room. I even calmly expressed all my concerns and cried…to no avail. I called the neurologist to see if he could expedite the situation and/or to see if I should schedule the EEG and Carotid artery scan yet (he originally said to wait and have the hospital do it). I was told to wait a few more days before scheduling them.
Claudia reported that mom was out of it and tired tonight and that she coughed so much one of the nurses came in to see how she was. We are told this is due to the fluid...please pray they take her tomorrow or asap!!!! I am so worried about her. thanks.
"A longing fulfilled is a tree of life." Proverbs 13:12
When I saw mom this morning, she smiled at me broadly as she was so happy to see me and the look had so much love in it. She was alert and talkative but you could see how washed out and tired she was from coughing. She coughed a lot at first. Dad came next with a huge bouquet of lilacs from upstate on our family property. Mom looked at them and mouthed, “How beautiful.” Shortly after that, mom was changed and moved to the wheelchair. Mom’s friends Flo and Maureen came to see her. We all sat and chatted and mom watched each person talk on and off. She took Maureen’s bottle of water after Mom pointed at the bottle and then herself. Maybe she is thirsty?... I had to leave then to take Lenny to the Emergency Room to get his foot and ankle x-rayed because he fell off a ladder at work from the first story roof. Always something. Never a dull moment. It turned out to be a bad bruise on both.....PTL
I spent a great deal of time on hold on the phone today. I called North Shore but still no room. I called back later in the day and still no room. I even calmly expressed all my concerns and cried…to no avail. I called the neurologist to see if he could expedite the situation and/or to see if I should schedule the EEG and Carotid artery scan yet (he originally said to wait and have the hospital do it). I was told to wait a few more days before scheduling them.
Claudia reported that mom was out of it and tired tonight and that she coughed so much one of the nurses came in to see how she was. We are told this is due to the fluid...please pray they take her tomorrow or asap!!!! I am so worried about her. thanks.
"A longing fulfilled is a tree of life." Proverbs 13:12
Mom Update, May 22, 2011, Sunday
Mom’s update Sunday, May 22, 2011
John and I started the day with mom. John and I love to sit on a Sunday morning together and watch our favorite programs on TV. Today we brought the “Sunday Ritual” to mom. We took some movies with us and stopped for coffee on the way. When we arrived mom was sleeping. We set up the room and put her hearing aides in and her glasses on. We opened her eyes and she looked happy to see us. John was kidding around with mom trying to make her smile, which she did a few times. I gave mom a BIG hug and I said, “What did I give you?” She said, “A hug.” I then gave her a kiss and said, (Please excuse my poor spelling of the Ukrainian phrase) “Di me chuma.” (Which means – Give me a kiss) Mom said, “Give me…” I told her “kiss.” We set up two tray tables and sat with mom watching “singing in the Rain” as we drank our coffee. We pushed the TV and dresser right up against the bed so mom could see better. John and I kept pointing to the screen when our favorite parts came up. We also sang together. Mom went between looking at the TV and looking at John. We watched a second movie after that and then it was time to go. We left the TV on the Mets channel in time for the Subway series (too bad the Mets didn’t win! Haha! I am a Yankees fan!). I also left the Mets book I made her on the tray table for her to see opened to Pelfrey (the pitcher for todays game).
Con, Anthony, Sam and Anthony Michael came next. Anthony was camping all weekend. She was sleeping when they came and Sam woke her up. She was happy to see them. Con was talking to her and she mouthed some words to her. Anthony brought pictures from the Confirmation to show mom and mom was looking through them for a while. She was looking at the picture of Sam and Poppy and she kept turning the picture over from front to back. It suddenly dawned on Anthony that she wanted the date on the back (a pet peeve of mom’s). Anthony said, Do you want the date on the back?” and she said, “Yes.” They were watching the Met game but mom didn’t really watch the game much but toward the end she started to watch. They sang “Take me out to the ball game” and mom sang the whole song. A couple of times she reached over with her right hand to straighten her fingers on her left hand. She said I love you too a few times. They played with the peg board and mom played with the pegs. She would pick them up and tried to put them in the hole. She stayed awake the whole time they were there. Sam was sitting next to her and she lifted her arm and put it on Sam’s shoulder to give her a hug.
Terry ended the day with mom. Anth and Con were there when Terry arrived Shorty after Terry arrived mom was placed in bed. She was awake but her head was angled so far down she couldn’t see the TV. Terry raised the bed. She had to be suctioned a lot. After being a few times of being suctioned she fell asleep. Terry left once mom was sleeping soundly.
Still no bed at North Shore. Please PRAY!
"Learn from tomorrow, live for today, HOPE for tomorrow"
Peace and Love,
~Claudia
I attached photos from the graduation!
#1 jean, Nonny and Poppy #2 The president stopped the graduation and grabbed the mic to talk about Jean! #3 The graduate #4 Jean and his Godfather, Emil #5 Jean and Ava #6 Jean and Poppy #7 Jean and his Godmother, Kathy
#8 Jean, John and I #9 Jean and the Public Safety Guy who gave Jean many parking tickets (Jean was famous for making his own spot!)
John and I started the day with mom. John and I love to sit on a Sunday morning together and watch our favorite programs on TV. Today we brought the “Sunday Ritual” to mom. We took some movies with us and stopped for coffee on the way. When we arrived mom was sleeping. We set up the room and put her hearing aides in and her glasses on. We opened her eyes and she looked happy to see us. John was kidding around with mom trying to make her smile, which she did a few times. I gave mom a BIG hug and I said, “What did I give you?” She said, “A hug.” I then gave her a kiss and said, (Please excuse my poor spelling of the Ukrainian phrase) “Di me chuma.” (Which means – Give me a kiss) Mom said, “Give me…” I told her “kiss.” We set up two tray tables and sat with mom watching “singing in the Rain” as we drank our coffee. We pushed the TV and dresser right up against the bed so mom could see better. John and I kept pointing to the screen when our favorite parts came up. We also sang together. Mom went between looking at the TV and looking at John. We watched a second movie after that and then it was time to go. We left the TV on the Mets channel in time for the Subway series (too bad the Mets didn’t win! Haha! I am a Yankees fan!). I also left the Mets book I made her on the tray table for her to see opened to Pelfrey (the pitcher for todays game).
Con, Anthony, Sam and Anthony Michael came next. Anthony was camping all weekend. She was sleeping when they came and Sam woke her up. She was happy to see them. Con was talking to her and she mouthed some words to her. Anthony brought pictures from the Confirmation to show mom and mom was looking through them for a while. She was looking at the picture of Sam and Poppy and she kept turning the picture over from front to back. It suddenly dawned on Anthony that she wanted the date on the back (a pet peeve of mom’s). Anthony said, Do you want the date on the back?” and she said, “Yes.” They were watching the Met game but mom didn’t really watch the game much but toward the end she started to watch. They sang “Take me out to the ball game” and mom sang the whole song. A couple of times she reached over with her right hand to straighten her fingers on her left hand. She said I love you too a few times. They played with the peg board and mom played with the pegs. She would pick them up and tried to put them in the hole. She stayed awake the whole time they were there. Sam was sitting next to her and she lifted her arm and put it on Sam’s shoulder to give her a hug.
Terry ended the day with mom. Anth and Con were there when Terry arrived Shorty after Terry arrived mom was placed in bed. She was awake but her head was angled so far down she couldn’t see the TV. Terry raised the bed. She had to be suctioned a lot. After being a few times of being suctioned she fell asleep. Terry left once mom was sleeping soundly.
Still no bed at North Shore. Please PRAY!
"Learn from tomorrow, live for today, HOPE for tomorrow"
Peace and Love,
~Claudia
I attached photos from the graduation!
#1 jean, Nonny and Poppy #2 The president stopped the graduation and grabbed the mic to talk about Jean! #3 The graduate #4 Jean and his Godfather, Emil #5 Jean and Ava #6 Jean and Poppy #7 Jean and his Godmother, Kathy
#8 Jean, John and I #9 Jean and the Public Safety Guy who gave Jean many parking tickets (Jean was famous for making his own spot!)
Mom Update, May 21, 2011, Saturday
Mom started her day with Kathy. Mom was sleepy and while KAthy was getting her ready for her day (heairng aides, glasses, lights on, blinds up) the CNA's came in to give mom a shower. Kathy left and headed to Jean's graduation.
Jean had his graduation form Five Towns College. He received a BFA in Musical Theater. He was presented with the Academic Honors Award for the Music Theater Department. WHen he went on stage to receive his award the president of the college pulled him aside and told him to wait before returning to his seat. The president, Stanley Cohen, took the mic and made a speech about Jean!!! It was amazing! He spoke about how four years earlier he had seen jean in his high school performance of 42nd street. He talked about how he gave Jean a full scholarship based on that performance and how four years later he is graduating. We were all so shocked!
After jean's graduation we all drove to see mom and he came into the facility in full cap and gown. He showed mom his diploma and award and mom said, "I am proud of you." It is wild how one minute mom is so disconnected and one minute right on target. Jean said, "I love you " to mom and she said, "I love you too."
We all went out to lunch and COn and Anthony and Sam stayed with mom (Anthony Michael is camping with Boy Scouts). She slept for most of their visit. Terry came by soon after we left. Once COn and Anthony left, Terry stayed and dad's cousins came by to see mom. They were on their way to a communion party and stopped in. Fran, Arnie and Marie came. They sat and talked. Mom wasn't really awake much. She needed to be suctioned and it was too upsetting for Marie so she left the room.
They stayed for awhile and then Terry put mom to bed. She left the Mets Yankees game on with the timer set for 2 hours.
Still no word for a bed opening at North Shore LIJ. It is crazy how long it takes for a bed to open up. We were told because she is on a vent and needs a special bed it takes longer.
Pray for a bed opening!
I will share the quote that I gave to Jean on his graduation day, it is my favorite...
All men dream: but not equally. Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dream with open eyes, to make it possible.
Love and Peace to all...
Claudia
Jean had his graduation form Five Towns College. He received a BFA in Musical Theater. He was presented with the Academic Honors Award for the Music Theater Department. WHen he went on stage to receive his award the president of the college pulled him aside and told him to wait before returning to his seat. The president, Stanley Cohen, took the mic and made a speech about Jean!!! It was amazing! He spoke about how four years earlier he had seen jean in his high school performance of 42nd street. He talked about how he gave Jean a full scholarship based on that performance and how four years later he is graduating. We were all so shocked!
After jean's graduation we all drove to see mom and he came into the facility in full cap and gown. He showed mom his diploma and award and mom said, "I am proud of you." It is wild how one minute mom is so disconnected and one minute right on target. Jean said, "I love you " to mom and she said, "I love you too."
We all went out to lunch and COn and Anthony and Sam stayed with mom (Anthony Michael is camping with Boy Scouts). She slept for most of their visit. Terry came by soon after we left. Once COn and Anthony left, Terry stayed and dad's cousins came by to see mom. They were on their way to a communion party and stopped in. Fran, Arnie and Marie came. They sat and talked. Mom wasn't really awake much. She needed to be suctioned and it was too upsetting for Marie so she left the room.
They stayed for awhile and then Terry put mom to bed. She left the Mets Yankees game on with the timer set for 2 hours.
Still no word for a bed opening at North Shore LIJ. It is crazy how long it takes for a bed to open up. We were told because she is on a vent and needs a special bed it takes longer.
Pray for a bed opening!
I will share the quote that I gave to Jean on his graduation day, it is my favorite...
All men dream: but not equally. Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dream with open eyes, to make it possible.
Love and Peace to all...
Claudia
Friday, May 20, 2011
Mom Update, May 20, 2011, Friday
No word on a bed at the hospital for mom yet. The person at the neurosurgeon’s office who is responsible for making the arrangements said that there has never been such a long wait for a bed for a patient. It was explained that mom needs a specific room/bed due to the surgery she needs (and I assume due to the vent?)
Jean began the day with mom this morning. Mom was asleep but woke when he was putting her hearing aids in. She looked at him and smiled and then went back to sleep.
When I arrived, mom was asleep. She had been washed and dressed and was ready for the day. Shortly thereafter, she woke. She was wide awake but generally quiet. She smiled at me when she saw me. While her nurse cleaned her burn andchanged her dressing, mom mothed, “Ow, ow, ow...!!!!!!” When she was she was finished, we did a crossword puzzle.
Clue: “Johnny Carson’s replacement. Who took over for Johnny Carson? Jay….”
Mom:“Leno”
Clue: “What kind of plant do you use to heal a burn? You break off the leaf & use the gel”
Mom: “Aloe Vera”
Mom grabbed my hand and fell asleep. She woke when dad arrived. He brought her a picture of their backyard at home. She held it for a long time and looked at it and then she fell back to sleep. It was hard to do anything with mom today because she is predominantly sleepy. No sooner do we begin a task and mom falls asleep…and the cycle continues. She was, though, drawn to dad when he came. She would reach for his hand, look for his face…
Claudia came later in the afternoon to join dad and I. Mom became more alert when she came. Claudia made her laugh!! And laugh!!! Claudia even teased mom and said, “Remember when you used to tell me, if you are so hungry, have an apple and I’d say I don’t want an apple. And you’d say, ‘Then you’re not so hungry” and mom mouthed, “My mother used to say that to me.” Mom laughed on and off which was nice to see, but mostly, she just sat and stared at us. It is as if the slightest activity causes her to become tired.
Dad, Lenny and I ate dinner together and then Lenny and I went back to tuck mom in for the night.
“…Thy Will be done” Matthew 6:10
Jean began the day with mom this morning. Mom was asleep but woke when he was putting her hearing aids in. She looked at him and smiled and then went back to sleep.
When I arrived, mom was asleep. She had been washed and dressed and was ready for the day. Shortly thereafter, she woke. She was wide awake but generally quiet. She smiled at me when she saw me. While her nurse cleaned her burn andchanged her dressing, mom mothed, “Ow, ow, ow...!!!!!!” When she was she was finished, we did a crossword puzzle.
Clue: “Johnny Carson’s replacement. Who took over for Johnny Carson? Jay….”
Mom:“Leno”
Clue: “What kind of plant do you use to heal a burn? You break off the leaf & use the gel”
Mom: “Aloe Vera”
Mom grabbed my hand and fell asleep. She woke when dad arrived. He brought her a picture of their backyard at home. She held it for a long time and looked at it and then she fell back to sleep. It was hard to do anything with mom today because she is predominantly sleepy. No sooner do we begin a task and mom falls asleep…and the cycle continues. She was, though, drawn to dad when he came. She would reach for his hand, look for his face…
Claudia came later in the afternoon to join dad and I. Mom became more alert when she came. Claudia made her laugh!! And laugh!!! Claudia even teased mom and said, “Remember when you used to tell me, if you are so hungry, have an apple and I’d say I don’t want an apple. And you’d say, ‘Then you’re not so hungry” and mom mouthed, “My mother used to say that to me.” Mom laughed on and off which was nice to see, but mostly, she just sat and stared at us. It is as if the slightest activity causes her to become tired.
Dad, Lenny and I ate dinner together and then Lenny and I went back to tuck mom in for the night.
“…Thy Will be done” Matthew 6:10
Thursday, May 19, 2011
Mom Update, May 19, 2011, Thursday
Sammy made her Confirmation today! God bless her abundantly.
Claudia and dad began the day together with mom this morning. Claudia said mom was sleeping. Mom opened her eyes independently and looked at them, but then went back to sleep. Claudia felt that the light above mom’s bed was bothering mom so they just left it on the night light mode. Clauida said that mom was coughing a lot. She coughs a lot in the mornings now. They left some “oldies” music on for her…stuff mom likes – “Some Enchanted Evening”…
When I arrived a short while later, mom was asleep. The music was still playing and she looked content and peaceful. As I moved around the room, she looked like she sensed my presence judging by the look on her face, so I said good morning and opened her eyes. She looked at me, reached for my face and stroked it and smiled. Then she went right back to sleep. She did open her eyes for about 10 minutes at one point and looked around. She coughed a lot on and off. She was very, very clammy to the touch (arms, hands, face…), so I dampened a cloth and wiped her down. She liked that. We spent some time praying and then I anointed her.
Two days ago, Dad, Aunt Carol and I went to dinner together. We haven’t done that together in a long time. After dinner, I took them for a ride down by the water…by the bay. As we drove through the Village, dad told us many stories of what existed there years ago when he was a boy. He told us who lived where and when. What farms used to be where and what they produced. He also told us about the boat he used to have and where he docked it and about how he and mom would ride on the bay in it. It made me realize just how much history mom and dad have together. It made me think about all the memories that exist constantly around dad in his home town. He has lived there for 79 years…54 of them with mom by his side.
I called North Shore again this morning. The lovely person I speak to each day was just as frustrated as we are today and commented that it was ridiculous that there are no beds open yet for mom and vowed to make an immediate phone call to inquire about a bed then and there. I haven’t heard back yet. I did some gentle physical therapy/range of motion exercises this morning with mom…mainly stretching. Mom’s CNA came in to wash her up today and her respiratory therapist stayed to assist… how touching.
Anthony, Con, Dad, Sammy and Ava came to join me and mom this afternoon. Sammy was all dressed up in her Confirmation dress and Ava was dressed up too (she was Sammy’s sponsor). The girls wanted to show mom their dresses. Mom’s face lit up when she saw them both (and when she saw dad). At one point, mom touched my arm and then pointed to her hearing aid. Sure enough, the battery was dead. They all left to get lunch and celebrate Sammy’s Confirmation and mom and I did a crossword puzzle. She was wide awake.
Clue: “Helen of ____” Mom: “Troy”
Mom got this one of 4 clues and then she fell asleep. When Anthony, Con, Dad, Sam, and Ava returned, mom began to laugh a bit when everyone else was laughing. Anthony worked on mom's legs and she moved her feet a bit independently. Dad tucked mom in for the night.
"Give us this day our daily bread." Luke 11:3
Claudia and dad began the day together with mom this morning. Claudia said mom was sleeping. Mom opened her eyes independently and looked at them, but then went back to sleep. Claudia felt that the light above mom’s bed was bothering mom so they just left it on the night light mode. Clauida said that mom was coughing a lot. She coughs a lot in the mornings now. They left some “oldies” music on for her…stuff mom likes – “Some Enchanted Evening”…
When I arrived a short while later, mom was asleep. The music was still playing and she looked content and peaceful. As I moved around the room, she looked like she sensed my presence judging by the look on her face, so I said good morning and opened her eyes. She looked at me, reached for my face and stroked it and smiled. Then she went right back to sleep. She did open her eyes for about 10 minutes at one point and looked around. She coughed a lot on and off. She was very, very clammy to the touch (arms, hands, face…), so I dampened a cloth and wiped her down. She liked that. We spent some time praying and then I anointed her.
Two days ago, Dad, Aunt Carol and I went to dinner together. We haven’t done that together in a long time. After dinner, I took them for a ride down by the water…by the bay. As we drove through the Village, dad told us many stories of what existed there years ago when he was a boy. He told us who lived where and when. What farms used to be where and what they produced. He also told us about the boat he used to have and where he docked it and about how he and mom would ride on the bay in it. It made me realize just how much history mom and dad have together. It made me think about all the memories that exist constantly around dad in his home town. He has lived there for 79 years…54 of them with mom by his side.
I called North Shore again this morning. The lovely person I speak to each day was just as frustrated as we are today and commented that it was ridiculous that there are no beds open yet for mom and vowed to make an immediate phone call to inquire about a bed then and there. I haven’t heard back yet. I did some gentle physical therapy/range of motion exercises this morning with mom…mainly stretching. Mom’s CNA came in to wash her up today and her respiratory therapist stayed to assist… how touching.
Anthony, Con, Dad, Sammy and Ava came to join me and mom this afternoon. Sammy was all dressed up in her Confirmation dress and Ava was dressed up too (she was Sammy’s sponsor). The girls wanted to show mom their dresses. Mom’s face lit up when she saw them both (and when she saw dad). At one point, mom touched my arm and then pointed to her hearing aid. Sure enough, the battery was dead. They all left to get lunch and celebrate Sammy’s Confirmation and mom and I did a crossword puzzle. She was wide awake.
Clue: “Helen of ____” Mom: “Troy”
Mom got this one of 4 clues and then she fell asleep. When Anthony, Con, Dad, Sam, and Ava returned, mom began to laugh a bit when everyone else was laughing. Anthony worked on mom's legs and she moved her feet a bit independently. Dad tucked mom in for the night.
"Give us this day our daily bread." Luke 11:3
Wednesday, May 18, 2011
Mom Update, May18, 2011, Wednesday
A day of waiting…
At 8:30 a.m., I called North Shore to see about the bed being ready, but it wasn’t ready yet. And so we wait.
Mom is still on tube feeding and still on the vent SMIV mode (which means on the vent). Her vent settings are RATE = 8 (6 is the lowest on the SMIV mode), PIP = 14 (lowest is 8 or 6 on this vent setting). All of this is assumed to be temporary until mom gets the shunt.
Claudia began the day with mom and found her sleepy and sleeping. Any time she talked to mom or opened her eyelids, mom would just stare blankly and go back to sleep. When dad and Anthony came this morning, mom was awake but coughing a lot. She was back to sleep mostly when I arrived in the early afternoon. We aren’t really doing any of her therapies (range of motion/physical therapy, cognitive therapy…) because we want her to rest. Basically, we hold her hand, or rub her hair and talk to or pray with her. At one point, before her shower, she woke and stared at me. It’s as though she is too weak to respond much. She manages to mouth, “What” every now and then, but that’s it. She had her bi-weekly shower this afternoon. After her shower, she was more awake than she was earlier at first, but then she fell asleep again. Claudia drove out to the facility in torrential rain and picked up dad and they tucked mom in for the evening and drove home together.
Hopefully, there will be a bed for mom at North Shore tomorrow....she slowly slips further away from us with each passing day.
"But they that wait upon the LORD shall renew [their] strength; they shall mount up with wings as eagles; they shall run, and not be weary; [and] they shall walk, and not faint." Isaiah 40:31
At 8:30 a.m., I called North Shore to see about the bed being ready, but it wasn’t ready yet. And so we wait.
Mom is still on tube feeding and still on the vent SMIV mode (which means on the vent). Her vent settings are RATE = 8 (6 is the lowest on the SMIV mode), PIP = 14 (lowest is 8 or 6 on this vent setting). All of this is assumed to be temporary until mom gets the shunt.
Claudia began the day with mom and found her sleepy and sleeping. Any time she talked to mom or opened her eyelids, mom would just stare blankly and go back to sleep. When dad and Anthony came this morning, mom was awake but coughing a lot. She was back to sleep mostly when I arrived in the early afternoon. We aren’t really doing any of her therapies (range of motion/physical therapy, cognitive therapy…) because we want her to rest. Basically, we hold her hand, or rub her hair and talk to or pray with her. At one point, before her shower, she woke and stared at me. It’s as though she is too weak to respond much. She manages to mouth, “What” every now and then, but that’s it. She had her bi-weekly shower this afternoon. After her shower, she was more awake than she was earlier at first, but then she fell asleep again. Claudia drove out to the facility in torrential rain and picked up dad and they tucked mom in for the evening and drove home together.
Hopefully, there will be a bed for mom at North Shore tomorrow....she slowly slips further away from us with each passing day.
"But they that wait upon the LORD shall renew [their] strength; they shall mount up with wings as eagles; they shall run, and not be weary; [and] they shall walk, and not faint." Isaiah 40:31
Tuesday, May 17, 2011
Mom Update, May 17, 2011, Tuesday
At around 9:30 p.m. Monday evening, I received a call from the facility that mom was coughing a lot and needed a lot of suctioning. Her blood pressure was up to 170 over 116 as well. The nurses called the resident physician who ordered a higher dosage of one of mom’s 2 blood pressure meds and added a 3rd blood pressure medication to be taken daily as well. They also gave her something to cut down on the phlegm and secretions. This is assumed to be related to the fluid on the brain in addition to possible sinus drainage from allergies. The head of respiratory finally conceded that it is possible for mom to suffer from allergies even though she is on a vent and the therapist said the pulmonologist would prescribe an allergy med or decongestant to alleviate the sinus drainage and post nasal drip. The nurse who called last night was very reassuring and comforting and assured me that she was watching mom carefully and that our family should just stay home and rest. The nurse would call if need be.
I forgot to mention yesterday that the EMT transport person commented on how well mom breathes and that she didn’t need to use much of the oxygen in the portable tank at all. He said that most people would have been well into a 2nd tank of oxygen while mom was still barely on her 1st tank.
Lenny began the day with mom this morning. We all decided to let her sleep this morning because she was probably up all night. He found her asleep and said good morning and gently opened her eyelids. Mom looked at Lenny and smiled but then went back to sleep. He said that she was coughing a lot this morning---more than usual. The nurse told Lenny that mom’s temperature this morning was 100.6. He sat with her and held her hand and prayed.
Dad, Anthony and I all arrived within a ½ hour of each other. The speech therapist came in and told us that mom would go back on tube feeding for now until the shunt is put in. The therapist felt that since mom is so sleepy and out of it and coughing so much, her chance of aspirating is higher so there is no need for taking chances. After the shunt, the therapist said that mom should be able to quickly go back to solid food again. The therapist also mentioned that we should ask the hospital staff to give mom solid food so that mom can return to the facility already off the G-tube if possible. I asked if the process of reintroducing solid food would take as long if the therapist had to do it and also whether mom would need another swallow test; the therapist did not anticipate the need for another test and felt that the reintroduction of food would go quickly this time through.
The neurosurgeon from North Shore called dad this morning. His office also called the facility. I called them as well. Evidently, as soon as there is an open bed, which should be today or tomorrow, mom will be moved to the hospital for the shunt surgery. The head of respiratory at the facility spoke to dad and I and I relayed all the information from the neurologist. The therapist is very positive about the shunt and said there are many people who are like night and day after the surgery (for the better).
There was no result from the chest x-ray taken this morning yet. The staff did not know if the wound care specialist saw mom’s burn under her arm or not yet. There was no record as of noon.
When I came back to see mom later in the day, I found out that she had no more temp (normal: 98.6) and her chest x-ray was clear with no signs of infection!!! Yipppeeeee! But…vague information about whether the wound care specialist saw the burn wound under her arm or not. I contacted the building administrator to tell about mom and how she is and to ask if the wound specialist can see her finally. As dad and I were leaving, Ava and John arrived. Mom was more awake then. After I left mom, the building administrator called me. We talked for more than 35 minutes about mom, her conditions... He apologized for the staff and admitted that, by now, if her were us, he would be livid with some of the care (or lack of it) that mom is getting. He said that the wound specialist has already seen mom 3 times and due to see her again tomorrow. He said that the staff should have had record of that and they should have answered that question for me easily by now. He said he'd do all he could to hold mom's bed and to at least call us to pack the room if need be. He was very pleasant and kind as always.
Anthony received some terrible news about the wife of a dear friend of his who is also a friend of his. She is a teacher and fell from the stage at school and hit her face on the floor and is unconscious since then. She needs a miracle and prayer. Please lift her up in prayer tonight along with mom.
John and Ava said that mom fell asleep quickly and really couldn't be woken up. They sat with her and held her hand and tucked her in for the night later on.
"Honor God by accepting each other as Christ has accepted you." Romans 15:7
I forgot to mention yesterday that the EMT transport person commented on how well mom breathes and that she didn’t need to use much of the oxygen in the portable tank at all. He said that most people would have been well into a 2nd tank of oxygen while mom was still barely on her 1st tank.
Lenny began the day with mom this morning. We all decided to let her sleep this morning because she was probably up all night. He found her asleep and said good morning and gently opened her eyelids. Mom looked at Lenny and smiled but then went back to sleep. He said that she was coughing a lot this morning---more than usual. The nurse told Lenny that mom’s temperature this morning was 100.6. He sat with her and held her hand and prayed.
Dad, Anthony and I all arrived within a ½ hour of each other. The speech therapist came in and told us that mom would go back on tube feeding for now until the shunt is put in. The therapist felt that since mom is so sleepy and out of it and coughing so much, her chance of aspirating is higher so there is no need for taking chances. After the shunt, the therapist said that mom should be able to quickly go back to solid food again. The therapist also mentioned that we should ask the hospital staff to give mom solid food so that mom can return to the facility already off the G-tube if possible. I asked if the process of reintroducing solid food would take as long if the therapist had to do it and also whether mom would need another swallow test; the therapist did not anticipate the need for another test and felt that the reintroduction of food would go quickly this time through.
The neurosurgeon from North Shore called dad this morning. His office also called the facility. I called them as well. Evidently, as soon as there is an open bed, which should be today or tomorrow, mom will be moved to the hospital for the shunt surgery. The head of respiratory at the facility spoke to dad and I and I relayed all the information from the neurologist. The therapist is very positive about the shunt and said there are many people who are like night and day after the surgery (for the better).
There was no result from the chest x-ray taken this morning yet. The staff did not know if the wound care specialist saw mom’s burn under her arm or not yet. There was no record as of noon.
When I came back to see mom later in the day, I found out that she had no more temp (normal: 98.6) and her chest x-ray was clear with no signs of infection!!! Yipppeeeee! But…vague information about whether the wound care specialist saw the burn wound under her arm or not. I contacted the building administrator to tell about mom and how she is and to ask if the wound specialist can see her finally. As dad and I were leaving, Ava and John arrived. Mom was more awake then. After I left mom, the building administrator called me. We talked for more than 35 minutes about mom, her conditions... He apologized for the staff and admitted that, by now, if her were us, he would be livid with some of the care (or lack of it) that mom is getting. He said that the wound specialist has already seen mom 3 times and due to see her again tomorrow. He said that the staff should have had record of that and they should have answered that question for me easily by now. He said he'd do all he could to hold mom's bed and to at least call us to pack the room if need be. He was very pleasant and kind as always.
Anthony received some terrible news about the wife of a dear friend of his who is also a friend of his. She is a teacher and fell from the stage at school and hit her face on the floor and is unconscious since then. She needs a miracle and prayer. Please lift her up in prayer tonight along with mom.
John and Ava said that mom fell asleep quickly and really couldn't be woken up. They sat with her and held her hand and tucked her in for the night later on.
"Honor God by accepting each other as Christ has accepted you." Romans 15:7
Monday, May 16, 2011
Mom Update, May 16, 2011, Monday
Claudia began the day with mom and said she was coughing a lot this morning and needed a lot of suctions. She ate her breakfast. Dad came next and said that mom was awake and alert and talkative with him. She ate all her lunch. The speech therapist came during lunch and decided that she would keep mom on the pureed food and even thicker liquids (honey consistency) until mom sees the neurosurgeon.
Mom went to the neurologist today. The facility, though they said they called the neurologist on Friday, had not called at all. I called the neurologist early this morning and made an appointment for mom for today. Here is an account of the visit to the neurologist:
-I explained how mom was getting more and more sleepy rather than more and more awake, as well as how mom is alert and “with it” when she is awake but extremely hard to rouse or wake up (if at all) when she is asleep. Sort of an up and down pattern of awake/asleep. I explained that mom had been on the CPAP mode of the vent for 1 ½ weeks approx. 24/7 and then had 1-2 nights of frequent apnea. Pulmonologist ordered CAT Scan last Thursday which showed fluid on the brain in the ventracles. Facility said that she had Normal Pressure Hydrocyphalus. Mom goes through periods of a few days awake then a few more days asleep or sleepy….
Neurologist:
-Mom is a high risk patient due to being on the vent.
-the longer mom is on the vent and not getting right amounts of oxygen, this can cause sleepiness
-Could be more of a respiratory, or artery, or seizure problem then fluid
-Ordered an EEG and full blood work including a look at Ammonia levels and Carotid artery scans, B-12 levels, Lymes
-Told us to get CDs of all mom’s CAT Scans from the hospital out here by us
-Sypmtoms she is having does not coincide with Normal Pressure Hydrocyphalus because that profile would be more consistent and stable and not up and down – asleep/awake…
-Neurologist did a neurological examination quickly and mom lifted her hands when asked to lift her arms, tracked his finger up/down/right/left with her eyes,
-When neurologist asked mom, “Who is this?” pointing to me, mom replied, “My mother” again!! The neurologist said, “She’s not your mother; she’s your daughter” and mom replied, “Oh yeah, that’s what I meant to say”!!!!!!!!
-The CAT Scan says there is excess fluid but not how much or how much more than last CAT Scan
-There is an increase in the size of the ventracles but not known why---can be due to normal shrinkage of brain from age, can be caused by blockage in ventracles, blood can clot slightly and cause a blockage…
-Neurologist suggests either a spinal tap, shunt, or cysternogram (scan of head) to determine what is wrong exactly
-Mom needs to see a neurosurgeon and her neurologist said no neurosurgeon out here will be too eager to take on someone who is such a high risk
-Neurologist recommends she go back to her neurosurgeon at North Shore (this is what we hoped for)
-She may need a spinal tap to confirm if she needs a shunt
-Neurologist called mom’s neurosurgeon while we were there and thankfully, her neurosurgeon said he would see her and that she most likely needs a shunt
-Neurologist said there is a chance that she may be too high a risk to do anything
If the facility doesn’t hear from the neurosurgeon regarding an appointment by tomorrow afternoon, then we need to call for an appointment.
Mom sees the neurologist 4-6 weeks after the shunt is put in. Not sure if it will be an external or internal shunt yet.
Dad and I stayed with mom for dinner. Her CNA fed her and she ate everything. I left and dad stayed with mom and set her up for bed tonight.
"Rejoice in the Lord your God, for he has given you the autumn rains in righteousness. He sends you abundant showers, both autumn and spring rains." Joel 2:23
Mom went to the neurologist today. The facility, though they said they called the neurologist on Friday, had not called at all. I called the neurologist early this morning and made an appointment for mom for today. Here is an account of the visit to the neurologist:
-I explained how mom was getting more and more sleepy rather than more and more awake, as well as how mom is alert and “with it” when she is awake but extremely hard to rouse or wake up (if at all) when she is asleep. Sort of an up and down pattern of awake/asleep. I explained that mom had been on the CPAP mode of the vent for 1 ½ weeks approx. 24/7 and then had 1-2 nights of frequent apnea. Pulmonologist ordered CAT Scan last Thursday which showed fluid on the brain in the ventracles. Facility said that she had Normal Pressure Hydrocyphalus. Mom goes through periods of a few days awake then a few more days asleep or sleepy….
Neurologist:
-Mom is a high risk patient due to being on the vent.
-the longer mom is on the vent and not getting right amounts of oxygen, this can cause sleepiness
-Could be more of a respiratory, or artery, or seizure problem then fluid
-Ordered an EEG and full blood work including a look at Ammonia levels and Carotid artery scans, B-12 levels, Lymes
-Told us to get CDs of all mom’s CAT Scans from the hospital out here by us
-Sypmtoms she is having does not coincide with Normal Pressure Hydrocyphalus because that profile would be more consistent and stable and not up and down – asleep/awake…
-Neurologist did a neurological examination quickly and mom lifted her hands when asked to lift her arms, tracked his finger up/down/right/left with her eyes,
-When neurologist asked mom, “Who is this?” pointing to me, mom replied, “My mother” again!! The neurologist said, “She’s not your mother; she’s your daughter” and mom replied, “Oh yeah, that’s what I meant to say”!!!!!!!!
-The CAT Scan says there is excess fluid but not how much or how much more than last CAT Scan
-There is an increase in the size of the ventracles but not known why---can be due to normal shrinkage of brain from age, can be caused by blockage in ventracles, blood can clot slightly and cause a blockage…
-Neurologist suggests either a spinal tap, shunt, or cysternogram (scan of head) to determine what is wrong exactly
-Mom needs to see a neurosurgeon and her neurologist said no neurosurgeon out here will be too eager to take on someone who is such a high risk
-Neurologist recommends she go back to her neurosurgeon at North Shore (this is what we hoped for)
-She may need a spinal tap to confirm if she needs a shunt
-Neurologist called mom’s neurosurgeon while we were there and thankfully, her neurosurgeon said he would see her and that she most likely needs a shunt
-Neurologist said there is a chance that she may be too high a risk to do anything
If the facility doesn’t hear from the neurosurgeon regarding an appointment by tomorrow afternoon, then we need to call for an appointment.
Mom sees the neurologist 4-6 weeks after the shunt is put in. Not sure if it will be an external or internal shunt yet.
Dad and I stayed with mom for dinner. Her CNA fed her and she ate everything. I left and dad stayed with mom and set her up for bed tonight.
"Rejoice in the Lord your God, for he has given you the autumn rains in righteousness. He sends you abundant showers, both autumn and spring rains." Joel 2:23
Sunday, May 15, 2011
Mom Update, May 15, 2011, Sunday
I began the day with mom this morning. She was in bed and had already eaten breakfast. I was concerned because there was a mix up over who would come first to begin the day with mom and so I arrived later than usual. I was greeted by some of the CNAs and nurses as I passed the nurse’s station. When I walked into mom’s room, it was comforting to find her in bed, eyes closed, with a peaceful look on her face…and her CD player playing an Andrea Bocelli CD. The music filled the room. I found mom’s CNA who told me, “I got mom ready for the day and put her music on for her to listen to.” I was so touched by the kindness and concern of the CNA for mom. Being with mom each day, as rewarding as it can be, is sometimes a taxing experience; so it is great to know mom is in good hands when we can’t be there.
Shortly after I arrived, Anthony, Con and Dad came to see mom. I opened her eyes and she looked good but with a tired gaze. We talked to her for a while and then her lunch arrived--- all pureed food (turkey, mashed potatoes, carrots, chocolate pudding). Anthony fed her and helped her feed herself first. She initially resisted. Then I took over feeding and helping her. I did my usual singing as she ate---much to the dismay of everyone present!!! They begged mom to eat so that I’d shut up!! Hahaha! I began to sing, “I’m gonna wash that man right out of my hair” and then mom sang the last line, “And send him on his way.” As mom was eating dessert, Florence and Maureen came to see her. Mom smiled at them and answered a few questions. We all talked as mom listened and ate and drank and then mom fell asleep. They put mom in the wheelchair next and she woke up finally. Anthony worked on mom’s legs. He bent them at the knee and then counted and lifted them toward her waist while holding her foot. Con pushed against mom’s knee as Anthony did this in order to provide some resistance. Anthony did this exercise to the count of 20 and mom counted out some of the numbers with him. Next, Anthony kneels on the floor before mom and dangles mom’s feet, then he pushes them to make her move them. He taps mom’s knees in order to get her to move her legs. The last exercise Anthony did with mom involved him placing his arm under her knee and across to rest his hand on her opposite knee. Anthony squeezes (gently) the muscle above the knee and then runs his fingers down the length of her leg in order to stimulate the muscles. Mom didn’t do much today. It was a sleepy day for her. Finally, mom moved her right foot independently!!Anthony persisted and then mom finally pushed down with her left foot too!!! AND she lifted her right leg independently!!!
Terry came next and played with the NOOK with mom. They played games and talked. Dad said that mom ate all her dinner and remained awake.
Claudia came next and said that mom stayed awake but coughed a lot and needed to be suctioned a lot tonight. Claudia put the laptop on the tray right in front of mom with headphones and mom watched Jean’s entire show from last night. Mom also fiddled with toys on the bed as she watched. Mom then watched 2 episodes of M.A.S.H. and loved this too! Claudia is bringing and leaving a portable DVD player in the safe for mom to use because mom is more attentive when things are up close sometimes. Mom was basically out of it though and foggy and dazed. She only had little glimpses of connectivity. Claudia tucked her in for the night and prayed with her.
"Do not neglect your gift...give yourself wholly to them" 1 Timothy 4:14
Shortly after I arrived, Anthony, Con and Dad came to see mom. I opened her eyes and she looked good but with a tired gaze. We talked to her for a while and then her lunch arrived--- all pureed food (turkey, mashed potatoes, carrots, chocolate pudding). Anthony fed her and helped her feed herself first. She initially resisted. Then I took over feeding and helping her. I did my usual singing as she ate---much to the dismay of everyone present!!! They begged mom to eat so that I’d shut up!! Hahaha! I began to sing, “I’m gonna wash that man right out of my hair” and then mom sang the last line, “And send him on his way.” As mom was eating dessert, Florence and Maureen came to see her. Mom smiled at them and answered a few questions. We all talked as mom listened and ate and drank and then mom fell asleep. They put mom in the wheelchair next and she woke up finally. Anthony worked on mom’s legs. He bent them at the knee and then counted and lifted them toward her waist while holding her foot. Con pushed against mom’s knee as Anthony did this in order to provide some resistance. Anthony did this exercise to the count of 20 and mom counted out some of the numbers with him. Next, Anthony kneels on the floor before mom and dangles mom’s feet, then he pushes them to make her move them. He taps mom’s knees in order to get her to move her legs. The last exercise Anthony did with mom involved him placing his arm under her knee and across to rest his hand on her opposite knee. Anthony squeezes (gently) the muscle above the knee and then runs his fingers down the length of her leg in order to stimulate the muscles. Mom didn’t do much today. It was a sleepy day for her. Finally, mom moved her right foot independently!!Anthony persisted and then mom finally pushed down with her left foot too!!! AND she lifted her right leg independently!!!
Terry came next and played with the NOOK with mom. They played games and talked. Dad said that mom ate all her dinner and remained awake.
Claudia came next and said that mom stayed awake but coughed a lot and needed to be suctioned a lot tonight. Claudia put the laptop on the tray right in front of mom with headphones and mom watched Jean’s entire show from last night. Mom also fiddled with toys on the bed as she watched. Mom then watched 2 episodes of M.A.S.H. and loved this too! Claudia is bringing and leaving a portable DVD player in the safe for mom to use because mom is more attentive when things are up close sometimes. Mom was basically out of it though and foggy and dazed. She only had little glimpses of connectivity. Claudia tucked her in for the night and prayed with her.
"Do not neglect your gift...give yourself wholly to them" 1 Timothy 4:14
Saturday, May 14, 2011
Mom Update, May 14, 2011, Saturday
Claudia began the day with mom. Mom was sound asleep. She slept well last night (still off CPAP vent mode due to swelling in the brain). Claudia said that mom was hard to wake and that, once mom did wake, she coughed a lot. Mom ate all her pureed breakfast and then fell asleep.
Con, Anthony and Anthony Michael came to see mom next. Mom had her eyes closed but Anthony could tell she was not sleeping so he opened her eyelids and she became instantly alert and awake and smiled at them all broadly. She ate lunch (pureed tilapia, spinach, applesauce, and cream of rice and cranberry juice). Mom fed herself part of the meal. They talked and then mom was taken to the shower.
Dad and Terry came to be with mom next and mom mostly slept. The shower wore her out.
I came and she was asleep at first, but I woke her before her dinner came and then fed her dinner (pureed ham steak – watch out John Pinet!!—pureed cauliflower, yams and peaches). She ate everything and drank all her juice. She was alert and awake.
Cousins Madeline, Angelo (Jr.) and JoAnn came to see mom from New Jersey!! Mom smiled when she saw them (she had just been moved to bed and changed and washed). They brought her a beautiful glass angel that changes colors. They also brought her a prayer and picture of St. Anthony (mom’s favorite saint) and Angelo brought her a comic strip from PICKLES that says “the 10 most powerful 2 letter words are ‘ If it is to be, it is up to me.” Mom read everything they brought. Mom held Madeline’s hand a lot. Madeline sat right next to mom. She looked at JoAnn and listened to her talk and talked back a few times. Angelo wrote a SONG for mom and SANG IT TO HER 3xs!!! Mom smiled and then chuckled!!! Here’s his song:
(Sung to the tune of ‘New York New York’)
Start spreading the news
Our girl Dotty is on her way
We could see her getting better and better
Every day.
Before you know it
She’ll be dancing the hula hula
With the help of Dr. Fotsingula (a joke between mom and Angelo
Then we’ll all stand and shout
Hooray --- Hooray!!!
Mom enjoyed their visit. She had more episodes of coughing and coughing things up again tonight but not as much as last night. I tucked her in even though she was still awake because I went to see Jean’s last play at college.I asked mom if she wanted to pray and she mouthed yes and then she made the sign of the cross. I told her I loved her and she mouthed it back to me and then mouthed I love you lots too. I felt badly leaving her when she was still awake. I set the timer on the TV.
"We have different gifts according to the grace given us" Romans 12:6
Con, Anthony and Anthony Michael came to see mom next. Mom had her eyes closed but Anthony could tell she was not sleeping so he opened her eyelids and she became instantly alert and awake and smiled at them all broadly. She ate lunch (pureed tilapia, spinach, applesauce, and cream of rice and cranberry juice). Mom fed herself part of the meal. They talked and then mom was taken to the shower.
Dad and Terry came to be with mom next and mom mostly slept. The shower wore her out.
I came and she was asleep at first, but I woke her before her dinner came and then fed her dinner (pureed ham steak – watch out John Pinet!!—pureed cauliflower, yams and peaches). She ate everything and drank all her juice. She was alert and awake.
Cousins Madeline, Angelo (Jr.) and JoAnn came to see mom from New Jersey!! Mom smiled when she saw them (she had just been moved to bed and changed and washed). They brought her a beautiful glass angel that changes colors. They also brought her a prayer and picture of St. Anthony (mom’s favorite saint) and Angelo brought her a comic strip from PICKLES that says “the 10 most powerful 2 letter words are ‘ If it is to be, it is up to me.” Mom read everything they brought. Mom held Madeline’s hand a lot. Madeline sat right next to mom. She looked at JoAnn and listened to her talk and talked back a few times. Angelo wrote a SONG for mom and SANG IT TO HER 3xs!!! Mom smiled and then chuckled!!! Here’s his song:
(Sung to the tune of ‘New York New York’)
Start spreading the news
Our girl Dotty is on her way
We could see her getting better and better
Every day.
Before you know it
She’ll be dancing the hula hula
With the help of Dr. Fotsingula (a joke between mom and Angelo
Then we’ll all stand and shout
Hooray --- Hooray!!!
Mom enjoyed their visit. She had more episodes of coughing and coughing things up again tonight but not as much as last night. I tucked her in even though she was still awake because I went to see Jean’s last play at college.I asked mom if she wanted to pray and she mouthed yes and then she made the sign of the cross. I told her I loved her and she mouthed it back to me and then mouthed I love you lots too. I felt badly leaving her when she was still awake. I set the timer on the TV.
"We have different gifts according to the grace given us" Romans 12:6
Friday, May 13, 2011
Mom Update, May 13, 2011, Friday
Ups and downs today.
On the up side, today is Jean’s 22nd birthday!!! Happy birthday Jeano!!
On the up side totally, mom was awake, alert and talkative today. She even laughed at some of the things dad and I said to her. Claudia began mom’s day and found her to be awake, alert and talkative too. Mom ate all her breakfast, lunch and dinner (not independently). We didn’t do much in the way of formal work with mom today. I began to do the writing boards with her but that was around 2:30 and she fell asleep for a bit (just a nap). We talked a lot, hugged a lot, she stroked my and dad’s faces. One of the male nurses said he had to leave the room yesterday because he got so choked up looking at mom stroke dad’s face as he whispered loving things to her. These few days have been medicine for dad…seeing mom awake, alert, talkative and interacting with him so much.
On a slight down side, the speech therapist is keeping mom on pureed food (she never even started with this texture of food before) until Monday. The therapist realizes that mom’s trach displacement, allergy coughing…all contributed to her aspirating some small pieces of food in her trach line the other day. Mom has been fine since. Hopefully, mom will be back on mechanical soft food again on Monday as promised.
On the up side, mom’s wound on her sacrum is doing better. AND, it is NOT a pressure wound (bed sore). It IS an abrasion type of sore most likely due to sitting in feces or urine too long. The wound is pink and looks good even though the first layer or so of skin is still off.
On the down side, terrible side… The burn under mom’s arm is open and looks ulcerated. Please pray for healing. About a week or two ago, one of the CNAs found a cyst under mom’s right arm. She was prescribed keflex and warm compresses. One of the nurses put a scalding compress on the cyst and burnt under mom’s arm badly. At first, the site was bright red and tender (about 5 inches around…maybe more). Then, part of the site cleared while the other part blistered. When I looked at the wound today, it is now, bright red with white rings and 2 1 inch round yellow, pusy looking centers. I inquired about the wound and found out that no wound care specialist had seen it to date. So, I asked for the wound care specialist to come check the wound however the person is not available until Monday at the earliest. Mom’s night CNA, in particular, is very diligent about caring for mom’s sacrum wound. She positions mom special ways and checks on her constantly.
Mom had a huge coughing fit after dinner was finished. She kept coughing up a lot of stuff and needed to be suctioned a lot. Finally, a respiratory person gave her a breathing treatment. She fell asleep for about an hour then and looked peaceful, but woke up coughing again after that.
On the up and down side, the results of mom’s CAT Scan came in today. As per the pulmonologist, respiratory therapist, and building MD, a comparison of a prior CAT Scan to this one (examined by the hospital) showed that mom has “Normal Pressure Hydrocephalus.” This means that the ventricles (tunnels) that run through the brain are swelling. Inside the area of swelling is fluid…some of which is spinal fluid. Right now, the pressure this is causing on the brain is normal (though it IS DEFINITELY causing unusual pressure on the brain). But something must be done to stop the swelling. The swelling is a residual side effect of the stroke and aneurysm (with a head injury, side effects can happen many years later). If the swelling is not controlled, then the fluid can accumulate and cause undo pressure on the brain which would go as far as the skull before compressing back into itself…fatal. Right now, mom is not in critical condition but she needs to see her neurologist asap. It appears that the plan would be to have a shunt installed in mom’s head again. The shunt maybe a temporary, exterior shunt (in which case, mom cannot go back to the facility she is in because they don’t take people with exterior shunts). Where she would stay while she had the shunt is unknown right now. Maybe the hospital??? The neurologist would know best. The other option is an internal shunt which but inside her head and forever. If she gets this shunt, she can go back to the facility she is currently in now. The next issue is that there is only a 14 day bed hold with Medicare/ Medicaid. Mom already has 13 days in the hospital from her last stay around Christmas. This means that she has only 1 day left. What that means is that if someone needs a bed and hers is the only one available while she is in the hospital, the person gets her bed and room. Her things are packed and put in the basement until her return, at which time, she would get a different room AGAIN…. (that would be her 4th room change). If there are no empty beds when she is ready to return to the facility, then she can’t go back there and has to go to a new facility. Hopefully, the room thing won’t be affected.
On the up side, the pulmonologist told the respiratory therapist that a procedure like this can correct the problem and be like someone “turning on a light switch” in terms of mom’s symptoms of being awake and then out, and sleeping so deeply she can’t be woken up, and having periods of apnea, and all her troubles and problems. I pray this is so.
Mom had difficulty breathing due to many, many secretions tonight so I stayed with her late into the night. We played “church music” and I held her hands and we “bed/chair” danced and sang together. We had church tonight. Mom, me and her roommate. Even though she was coughing on and off, she sang and prayed. At one point, the filter in her trach line became saturated but it was so saturated it didn’t like it was saturated at all…mom began to labor to breathe and then her total volume went to 0 and then to maybe 75 and back to 0 again. I held her tightly and rang the call bell and yelled for help. Help was slow to come but finally did. Mom was able to breathe on her own!! Sort of like a woman in labor --- breathing like they teach us ladies to do in Lamaze classes. She was fine. They changed the filter and suctioned her and she was at peace immediately. Shortly after that, she continued to hold my hands and sing and pray and then she fell asleep.
I tucked mom in tonight and prayed with her and anointed her with oil as always.
And still we look forward. Still there is hope.
"Don't ever be afraid or discouraged...Be strong and courageous" Joshua 10:25
On the up side, today is Jean’s 22nd birthday!!! Happy birthday Jeano!!
On the up side totally, mom was awake, alert and talkative today. She even laughed at some of the things dad and I said to her. Claudia began mom’s day and found her to be awake, alert and talkative too. Mom ate all her breakfast, lunch and dinner (not independently). We didn’t do much in the way of formal work with mom today. I began to do the writing boards with her but that was around 2:30 and she fell asleep for a bit (just a nap). We talked a lot, hugged a lot, she stroked my and dad’s faces. One of the male nurses said he had to leave the room yesterday because he got so choked up looking at mom stroke dad’s face as he whispered loving things to her. These few days have been medicine for dad…seeing mom awake, alert, talkative and interacting with him so much.
On a slight down side, the speech therapist is keeping mom on pureed food (she never even started with this texture of food before) until Monday. The therapist realizes that mom’s trach displacement, allergy coughing…all contributed to her aspirating some small pieces of food in her trach line the other day. Mom has been fine since. Hopefully, mom will be back on mechanical soft food again on Monday as promised.
On the up side, mom’s wound on her sacrum is doing better. AND, it is NOT a pressure wound (bed sore). It IS an abrasion type of sore most likely due to sitting in feces or urine too long. The wound is pink and looks good even though the first layer or so of skin is still off.
On the down side, terrible side… The burn under mom’s arm is open and looks ulcerated. Please pray for healing. About a week or two ago, one of the CNAs found a cyst under mom’s right arm. She was prescribed keflex and warm compresses. One of the nurses put a scalding compress on the cyst and burnt under mom’s arm badly. At first, the site was bright red and tender (about 5 inches around…maybe more). Then, part of the site cleared while the other part blistered. When I looked at the wound today, it is now, bright red with white rings and 2 1 inch round yellow, pusy looking centers. I inquired about the wound and found out that no wound care specialist had seen it to date. So, I asked for the wound care specialist to come check the wound however the person is not available until Monday at the earliest. Mom’s night CNA, in particular, is very diligent about caring for mom’s sacrum wound. She positions mom special ways and checks on her constantly.
Mom had a huge coughing fit after dinner was finished. She kept coughing up a lot of stuff and needed to be suctioned a lot. Finally, a respiratory person gave her a breathing treatment. She fell asleep for about an hour then and looked peaceful, but woke up coughing again after that.
On the up and down side, the results of mom’s CAT Scan came in today. As per the pulmonologist, respiratory therapist, and building MD, a comparison of a prior CAT Scan to this one (examined by the hospital) showed that mom has “Normal Pressure Hydrocephalus.” This means that the ventricles (tunnels) that run through the brain are swelling. Inside the area of swelling is fluid…some of which is spinal fluid. Right now, the pressure this is causing on the brain is normal (though it IS DEFINITELY causing unusual pressure on the brain). But something must be done to stop the swelling. The swelling is a residual side effect of the stroke and aneurysm (with a head injury, side effects can happen many years later). If the swelling is not controlled, then the fluid can accumulate and cause undo pressure on the brain which would go as far as the skull before compressing back into itself…fatal. Right now, mom is not in critical condition but she needs to see her neurologist asap. It appears that the plan would be to have a shunt installed in mom’s head again. The shunt maybe a temporary, exterior shunt (in which case, mom cannot go back to the facility she is in because they don’t take people with exterior shunts). Where she would stay while she had the shunt is unknown right now. Maybe the hospital??? The neurologist would know best. The other option is an internal shunt which but inside her head and forever. If she gets this shunt, she can go back to the facility she is currently in now. The next issue is that there is only a 14 day bed hold with Medicare/ Medicaid. Mom already has 13 days in the hospital from her last stay around Christmas. This means that she has only 1 day left. What that means is that if someone needs a bed and hers is the only one available while she is in the hospital, the person gets her bed and room. Her things are packed and put in the basement until her return, at which time, she would get a different room AGAIN…. (that would be her 4th room change). If there are no empty beds when she is ready to return to the facility, then she can’t go back there and has to go to a new facility. Hopefully, the room thing won’t be affected.
On the up side, the pulmonologist told the respiratory therapist that a procedure like this can correct the problem and be like someone “turning on a light switch” in terms of mom’s symptoms of being awake and then out, and sleeping so deeply she can’t be woken up, and having periods of apnea, and all her troubles and problems. I pray this is so.
Mom had difficulty breathing due to many, many secretions tonight so I stayed with her late into the night. We played “church music” and I held her hands and we “bed/chair” danced and sang together. We had church tonight. Mom, me and her roommate. Even though she was coughing on and off, she sang and prayed. At one point, the filter in her trach line became saturated but it was so saturated it didn’t like it was saturated at all…mom began to labor to breathe and then her total volume went to 0 and then to maybe 75 and back to 0 again. I held her tightly and rang the call bell and yelled for help. Help was slow to come but finally did. Mom was able to breathe on her own!! Sort of like a woman in labor --- breathing like they teach us ladies to do in Lamaze classes. She was fine. They changed the filter and suctioned her and she was at peace immediately. Shortly after that, she continued to hold my hands and sing and pray and then she fell asleep.
I tucked mom in tonight and prayed with her and anointed her with oil as always.
And still we look forward. Still there is hope.
"Don't ever be afraid or discouraged...Be strong and courageous" Joshua 10:25
Mom Update, May 12, 2011, Thursday
Dad and Claudia began the day with mom early this morning. Mom was scheduled to have a CAT Scan done today but no one knew what time, so that is why Claudia and Dad arrived so early. Claudia had to open mom’s eyes and then she was awake and alert. She washed mom up and prepared her glasses and hearing aids. Mom’s hearing aids had to be cleaned well and the batteries needed changing. Claudia repositioned mom in the bed next…sitting mom up straight in the bed and pulling her up high in the bed. It is important to position her well for breathing purposes. Claudia and dad worked on stretching mom’s hands and then breakfast came and Claudia left for work but dad stayed.
Anthony came and joined Dad and Mom. He said mom was awake and alert and talkative. Dad said she mouthed a lot of things to them both and that she also laughed a lot with them too. Anthony worked on mom’s ankles a bit before lunch. Anthony said the speech therapist came to see how mom does with eating. The therapist brought mom a tray of regular food---spaghetti, meatballs… Mom did well eating it at first but quickly began to cough a lot. Anthony said that he saw a minute piece of food in her trach line again but he said no one else noticed it. The speech person took the food she brought in with her away and returned with pureed food instead. It made no difference. Mom continued to cough. We think mom has post nasal drip as she did before all this happened. Mom’s nose runs a lot while she eats. The head respiratory therapist came in to see mom and Anthony showed him that mom’s trach was sticking really far outside her neck. The therapist pushed it back in well again and fixed it. The current plan is that the speech therapist wants to monitor mom’s eating before deciding whether or not to change her food to puree or G-tube feeding again…. God help us. The respiratory therapist put her back on the vent on the lowest setting SMIV Total Rate 6 with no more CPAP mode until they read the CAT Scan tomorrow. Though I don’t know what they have to compare it to. Mom fell asleep and Anthony left. We are wondering if maybe the CPAP mode of the vent where mom has to breathe more on her own is tiring her out? We need to ask tomorrow if this is possible.
When I arrived, just after lunch, dad and mom were already in the transport ambulance on their way to the hospital for her CAT Scan. I followed behind them. All went smoothly there and we returned back to the facility. No results of the scan until tomorrow. When we returned to mom’s room at the facility, she kept hugging dad and reaching for him and stroking his face and arm. He talked to her as she did this. It was so tender to watch. I began to straighten mom’s room. As I cleaned, I stopped and asked mom, “Hey, who messed up your room like this?” and she mouthed, “Poppy” (dad!!!). We laughed!! Mom spoke to Lenny on the phone. She mouthed, “Hi”, “Lenny” and “I love you too.” Mom and I talked and she put her arm around me and stroked my hair. I had told mom that Claudia said she was trying to climb out of her bed yesterday morning and mom mouthed something along the lines of “nonsense!” in an indignant manner. I saw the sores on mom’s lower back today when she was being changed. There are 2 spots that look like skin that was rubbed away…as if a person fell and skinned his/her knees---it looks just like that. I had to ask the CNAs to get the wound/medication nurse to change the bandage over the wound because it became contaminated with waste. Good thing I was there to ask. The nurse didn’t even seem to think that was necessary but I had her do it anyway. I had mom drink a lot of juice throughout the afternoon too. Mom and I did the calendar and white board as well. When I asked her what month it was, she didn’t know but after I prompted her by starting to name the months from the beginning of the year, she knew May came next. The same technique held true for the date and the year and the day as well. Mom knew what came next. We fixed the pictures on her wall next until she was satisfied. Mom was engrossed with staring at the border near the ceiling of her room today…it was as though this was the first time she saw it. The border has birds and birdhouses BUT the birds have leopard and giraffe spots on them. Really weird and terrible for a brain injured person to look at!! No semblance of normalcy!! Then we read her Mother’s Day cards. I gave her the small dry erase book to practice tracing letters with markers and she tried to trace the title on the page when I asked her to trace the letters. She pointed twice to get my attention and also tapped me on the shoulder once. I gave her a Reader’s Digest oversized print book to read and she thumbed through the pages and read things sporadically on the story, “This Time Together” by Carol Burnett. She became sleepy around 5 p.m. but not overly so. She would just drift off and then wake up again. Dinner came --- all pureed --- crab salad, mandarin oranges, pastina vegetable salad and vanilla milk and coffee (thickened). Mom didn’t initiate eating so I gave her the first 2 spoonfuls. After 2 spoonfuls and a sip of juice, she began to cough. I waited for the coughing to subside and then I sang to her as she ate. I made up a song and a tune about eating and chewing and swallowing and drinking….similar to what I would do with the kids I taught with special needs. I wondered whether the singing would sooth her, help her to focus more (opposite side of brain from spoken language), distract her from coughing???? Whether it was coincidence or not, I don’t know but it worked. She no longer coughed at all during the meal (except for once when I stopped singing). She ate her entire meal (1/4 she fed herself) and drank her coffee, vanilla milk and 2 containers of juice! After dinner, she was awake but tired because, though her eyes were wide open, she was quiet. I gave her the pegs and pegboard to use on the bed tray and she fiddled with the pegs. She could only place them in the board when I did hand over hand prompting though. I left to have dinner with Lenny.
Claudia came to see mom next. Mom was awake, alert, with it, and “on fire!!” Claudia gave mom the METS book that Claudia made for mom with the players pictures, stats, and all other pertinent information. Claudia created the book and laminated it. Mom was staring at it and lifting the pages and flipping through the pages and looking at the team players. Studying each one, reading each page. One of the METS players made history tonight by winning the game by hitting a 3 run homer. So Claudia told mom the news and said, “Mom, mom Carlos Beltron hit 3 home runs and won the game!!” Then, Claudia showed mom the METS book and turned to this player’s page and said, “Who hit the 3 run homer?!!” Mom mouthed, “Carlos Beltron.” Mom was able to read the page. As each player went up to bat, Claudia found the player in the book and told mom that this player was up at bat. Mom paid attention and really watched what was going on both on TV and in the book. Claudia also put the METS baseball cards that Anthony bought her on the tray and mom picked them up with her left hand and studied each one too. Then Claudia read mom the book, “Pigs are Beautiful” and mom LOVED it!!! Loved it!! She was glued to every word…it is a repetitive word book, and by the end, mom finished the last line. Then, Anthony talked to mom on the phone and when Claudia asked mom, “Who was on the phone?” Mom pointed to herself!! Claudia meant Anthony!! When they read the pig book, there are pigs in the back of the book so Claudia counted them and stopped at 11 and mom mouthed, “12.” Claudia asked mom if she liked the book and said that the book is a good one with great pictures and facts and it is short. Mom mouthed, “Yes.” Claudia was trying to convey that the book was not necessarily a children’s book. They talked and talked a lot. They went through family photos…Claudia provided the first phonemic cue of each name…”This is Jjjjjj….” Mom would finish the name (Jean, John…). Claudia also played her flip video of Jean and Ava singing and mom loved that too. Claudia readied her for bed and then prayed with mom. As tired as Claudia was, she was great to be there with mom tonight.
"Every good and perfect gift is from above, coming down from the Father of the heavenly lights..." James 1:7
Anthony came and joined Dad and Mom. He said mom was awake and alert and talkative. Dad said she mouthed a lot of things to them both and that she also laughed a lot with them too. Anthony worked on mom’s ankles a bit before lunch. Anthony said the speech therapist came to see how mom does with eating. The therapist brought mom a tray of regular food---spaghetti, meatballs… Mom did well eating it at first but quickly began to cough a lot. Anthony said that he saw a minute piece of food in her trach line again but he said no one else noticed it. The speech person took the food she brought in with her away and returned with pureed food instead. It made no difference. Mom continued to cough. We think mom has post nasal drip as she did before all this happened. Mom’s nose runs a lot while she eats. The head respiratory therapist came in to see mom and Anthony showed him that mom’s trach was sticking really far outside her neck. The therapist pushed it back in well again and fixed it. The current plan is that the speech therapist wants to monitor mom’s eating before deciding whether or not to change her food to puree or G-tube feeding again…. God help us. The respiratory therapist put her back on the vent on the lowest setting SMIV Total Rate 6 with no more CPAP mode until they read the CAT Scan tomorrow. Though I don’t know what they have to compare it to. Mom fell asleep and Anthony left. We are wondering if maybe the CPAP mode of the vent where mom has to breathe more on her own is tiring her out? We need to ask tomorrow if this is possible.
When I arrived, just after lunch, dad and mom were already in the transport ambulance on their way to the hospital for her CAT Scan. I followed behind them. All went smoothly there and we returned back to the facility. No results of the scan until tomorrow. When we returned to mom’s room at the facility, she kept hugging dad and reaching for him and stroking his face and arm. He talked to her as she did this. It was so tender to watch. I began to straighten mom’s room. As I cleaned, I stopped and asked mom, “Hey, who messed up your room like this?” and she mouthed, “Poppy” (dad!!!). We laughed!! Mom spoke to Lenny on the phone. She mouthed, “Hi”, “Lenny” and “I love you too.” Mom and I talked and she put her arm around me and stroked my hair. I had told mom that Claudia said she was trying to climb out of her bed yesterday morning and mom mouthed something along the lines of “nonsense!” in an indignant manner. I saw the sores on mom’s lower back today when she was being changed. There are 2 spots that look like skin that was rubbed away…as if a person fell and skinned his/her knees---it looks just like that. I had to ask the CNAs to get the wound/medication nurse to change the bandage over the wound because it became contaminated with waste. Good thing I was there to ask. The nurse didn’t even seem to think that was necessary but I had her do it anyway. I had mom drink a lot of juice throughout the afternoon too. Mom and I did the calendar and white board as well. When I asked her what month it was, she didn’t know but after I prompted her by starting to name the months from the beginning of the year, she knew May came next. The same technique held true for the date and the year and the day as well. Mom knew what came next. We fixed the pictures on her wall next until she was satisfied. Mom was engrossed with staring at the border near the ceiling of her room today…it was as though this was the first time she saw it. The border has birds and birdhouses BUT the birds have leopard and giraffe spots on them. Really weird and terrible for a brain injured person to look at!! No semblance of normalcy!! Then we read her Mother’s Day cards. I gave her the small dry erase book to practice tracing letters with markers and she tried to trace the title on the page when I asked her to trace the letters. She pointed twice to get my attention and also tapped me on the shoulder once. I gave her a Reader’s Digest oversized print book to read and she thumbed through the pages and read things sporadically on the story, “This Time Together” by Carol Burnett. She became sleepy around 5 p.m. but not overly so. She would just drift off and then wake up again. Dinner came --- all pureed --- crab salad, mandarin oranges, pastina vegetable salad and vanilla milk and coffee (thickened). Mom didn’t initiate eating so I gave her the first 2 spoonfuls. After 2 spoonfuls and a sip of juice, she began to cough. I waited for the coughing to subside and then I sang to her as she ate. I made up a song and a tune about eating and chewing and swallowing and drinking….similar to what I would do with the kids I taught with special needs. I wondered whether the singing would sooth her, help her to focus more (opposite side of brain from spoken language), distract her from coughing???? Whether it was coincidence or not, I don’t know but it worked. She no longer coughed at all during the meal (except for once when I stopped singing). She ate her entire meal (1/4 she fed herself) and drank her coffee, vanilla milk and 2 containers of juice! After dinner, she was awake but tired because, though her eyes were wide open, she was quiet. I gave her the pegs and pegboard to use on the bed tray and she fiddled with the pegs. She could only place them in the board when I did hand over hand prompting though. I left to have dinner with Lenny.
Claudia came to see mom next. Mom was awake, alert, with it, and “on fire!!” Claudia gave mom the METS book that Claudia made for mom with the players pictures, stats, and all other pertinent information. Claudia created the book and laminated it. Mom was staring at it and lifting the pages and flipping through the pages and looking at the team players. Studying each one, reading each page. One of the METS players made history tonight by winning the game by hitting a 3 run homer. So Claudia told mom the news and said, “Mom, mom Carlos Beltron hit 3 home runs and won the game!!” Then, Claudia showed mom the METS book and turned to this player’s page and said, “Who hit the 3 run homer?!!” Mom mouthed, “Carlos Beltron.” Mom was able to read the page. As each player went up to bat, Claudia found the player in the book and told mom that this player was up at bat. Mom paid attention and really watched what was going on both on TV and in the book. Claudia also put the METS baseball cards that Anthony bought her on the tray and mom picked them up with her left hand and studied each one too. Then Claudia read mom the book, “Pigs are Beautiful” and mom LOVED it!!! Loved it!! She was glued to every word…it is a repetitive word book, and by the end, mom finished the last line. Then, Anthony talked to mom on the phone and when Claudia asked mom, “Who was on the phone?” Mom pointed to herself!! Claudia meant Anthony!! When they read the pig book, there are pigs in the back of the book so Claudia counted them and stopped at 11 and mom mouthed, “12.” Claudia asked mom if she liked the book and said that the book is a good one with great pictures and facts and it is short. Mom mouthed, “Yes.” Claudia was trying to convey that the book was not necessarily a children’s book. They talked and talked a lot. They went through family photos…Claudia provided the first phonemic cue of each name…”This is Jjjjjj….” Mom would finish the name (Jean, John…). Claudia also played her flip video of Jean and Ava singing and mom loved that too. Claudia readied her for bed and then prayed with mom. As tired as Claudia was, she was great to be there with mom tonight.
"Every good and perfect gift is from above, coming down from the Father of the heavenly lights..." James 1:7
Mom Update, May 11, 2011, Wednesday
I started the day with mom this morning and she was a pistol! She was wide awake. She was motioning to the bulletin board where all of her pictures and notes are. Someone had placed a letter smack dab in the middle of the board with a push pin. I asked her if she wanted the letter. She said, “You are covering my pictures!” She said it with an angry tone. I almost fainted! I took the letter down and handed it to her. She took it form me an tossed it by her feet. She then reached toward the board again. I guess it is a good thing that I work with student who have autism, because I looked at the board and said to myself, “What is different about the board? What isn’t usually there?” I saw an Easter card placed with a push pin on the board. I pointed to it and said, “Do you want this off?” Mom reached out her hand so I took it off the board and handed it to her. She tossed it at her feet again. She reached out again and again I asked my self the same questions. There was another paper covering the poster Kathy put up. It is a quote from the bible (the Lord if my shepherd) made out of product letters (fruit loops, cherrios, etc.). I took down the paper and she stopped reaching. Ahhhhhhh! All better!
She kept grabbing at her trach tubing this morning. I had to wrestle with her a few times. I called Kathy to tell her the story about the bulletin board and asked mom if she wanted to talk to her? She reached for the phone and put it to her ear. Kathy must have said only a few things and mom said (clean as day) “I have to go.” I cracked up! “Where do YOU have to go?” I asked. I took the phone and told Kathy. We laughed. I gave her the phone back so Kathy could say goodbye. Mom said, “I love you too.”
Breakfast came and it was pancakes. I set up her coffee and oatmeal the way she likes it. I cut her pancakes. A nurse came in to feed mom. She grabbed at the fork to feed herself. She was really on! At one point mom said, “stay a few minutes.” I felt terrible that I had to go to work, but I was already late. It’s days like these that make it soooooo hard to go to work.
I called Anthony so he could come when she is alert. He was happy and said after his job he would be there. He said she was very alert. Lunch came and mom was coughing a lot. At one point the nurse came in to suction her and there appeared to be food in the trach tube! (This is our worst nightmare! This could be aspiration. One more excuse to go backwards!) The nurse called the speech therapist who now has mom on a soft food diet for the next few days. UGH! I can’t take the ups and downs, it is taking its toll on all of us.
They also ordered a Cat Scan for tomorrow because she has been so unresponsive the past week or two. It figures, the night that the doctor comes to assess if she needs to go for the cat scan, she is alert. I guess that is a good sign but frustrating. She is going tomorrow morning for the cat scan. Dad and Anthony will be going with her.
Dad came in the afternoon and stayed with mom until the evening. I went back this evening to see mom and she was out of it. I was able to wake her for a short time, during which time the doctor came to assess her before ordering the cat scan.
"Challenges are what make life interesting; overcoming them is what makes life meaningful."
Author: Joshua J. Marine
She kept grabbing at her trach tubing this morning. I had to wrestle with her a few times. I called Kathy to tell her the story about the bulletin board and asked mom if she wanted to talk to her? She reached for the phone and put it to her ear. Kathy must have said only a few things and mom said (clean as day) “I have to go.” I cracked up! “Where do YOU have to go?” I asked. I took the phone and told Kathy. We laughed. I gave her the phone back so Kathy could say goodbye. Mom said, “I love you too.”
Breakfast came and it was pancakes. I set up her coffee and oatmeal the way she likes it. I cut her pancakes. A nurse came in to feed mom. She grabbed at the fork to feed herself. She was really on! At one point mom said, “stay a few minutes.” I felt terrible that I had to go to work, but I was already late. It’s days like these that make it soooooo hard to go to work.
I called Anthony so he could come when she is alert. He was happy and said after his job he would be there. He said she was very alert. Lunch came and mom was coughing a lot. At one point the nurse came in to suction her and there appeared to be food in the trach tube! (This is our worst nightmare! This could be aspiration. One more excuse to go backwards!) The nurse called the speech therapist who now has mom on a soft food diet for the next few days. UGH! I can’t take the ups and downs, it is taking its toll on all of us.
They also ordered a Cat Scan for tomorrow because she has been so unresponsive the past week or two. It figures, the night that the doctor comes to assess if she needs to go for the cat scan, she is alert. I guess that is a good sign but frustrating. She is going tomorrow morning for the cat scan. Dad and Anthony will be going with her.
Dad came in the afternoon and stayed with mom until the evening. I went back this evening to see mom and she was out of it. I was able to wake her for a short time, during which time the doctor came to assess her before ordering the cat scan.
"Challenges are what make life interesting; overcoming them is what makes life meaningful."
Author: Joshua J. Marine
Mom Update, May 10, 2011, Tuesday
Dad started the day with mom. She was awake this morning when dad got there. She said, “Good morning” to dad and smiled. She was pretty with it. Anthony came before lunch. A CAN told Anthony that mom had a bed sore on her bottom. Anthony spoke to the nurse practitioner and the nursing supervisor. They looked at it and dad looked at it. It looked like a scrape where skin rubbed away. The nurse practitioner said it doesn’t look bad right now but it needs to be taken care of right away. They aren’t going to put her in the chair too long until they get it healed. She didn’t go into the chair until 2pm and was put in bed right after dinner. The nurse practioner ordered an antibiotic cream to get rid of it. The CNA’s are arguing over whose fault it is that mom has the sore. Anthony made the nurse practioner look under her arm at the blister and they are putting silverdine on it. It already looked better. Anthony said mommy was in good spirits and smiling. Anthony said, “How are you doing” and mom said, “How are you do?” Mom said, “What’s up” to Anthony spontaneously and the respiratory therapist saw mom talking. She stayed awake all morning until lunch. She fed herself toward the end of the meal but needed to be fed for most of the meal. She ate the whole lunch. She slept this afternoon after lunch.
A nurse from the facility called Kathy about mom’s bed sore.
John went to see mom in the evening. She was half sleeping. He had to wake her to eat. She was in a fog. She did snap out of it. Dad had to feed her the whole meal. She wouldn’t eat by herself. She went back in bed. Dad sat with her for a while. She was awake but in a daze. Dad left and John did her PT. She was sound asleep. She didn’t even show signs of pain when working with her arms and hands. She was almost too limp with no resistance. She woke up for a few minutes. John tried to find the Met game but couldn’t find the channel. He put on the Yankees (good excuse John!) and he teased her about the Mets and Yankees. She dozed off. John adjusted the bed, took out her hearing aids and had the nurse put the mitts on. He said a prayer and shut the lights.
I am absolutely exhausted, so I have no idea if any of this makes any sense! (sorry) Crazy day today!
“Don’t worry about tomorrow, God is already there”
Peace and Love,
~Claud
A nurse from the facility called Kathy about mom’s bed sore.
John went to see mom in the evening. She was half sleeping. He had to wake her to eat. She was in a fog. She did snap out of it. Dad had to feed her the whole meal. She wouldn’t eat by herself. She went back in bed. Dad sat with her for a while. She was awake but in a daze. Dad left and John did her PT. She was sound asleep. She didn’t even show signs of pain when working with her arms and hands. She was almost too limp with no resistance. She woke up for a few minutes. John tried to find the Met game but couldn’t find the channel. He put on the Yankees (good excuse John!) and he teased her about the Mets and Yankees. She dozed off. John adjusted the bed, took out her hearing aids and had the nurse put the mitts on. He said a prayer and shut the lights.
I am absolutely exhausted, so I have no idea if any of this makes any sense! (sorry) Crazy day today!
“Don’t worry about tomorrow, God is already there”
Peace and Love,
~Claud
Mom Update, May 9, 2011, Monday
Lenny started the day with mom. He said she was awake. Lenny asked if she ate her breakfast and the staff said she ate everything. He kept her awake and talked to her but she gave a blank stare. He did her PT. He talked to her as he did PT but she didn’t seem connected. They changed her trach pieces. Lenny said, “I love you” and she said, “I love you too.”
When Anthony came Carmine and mom’s friend Flo were there waiting for her to be put in the chair. Carmine worked with her and then lunch came. A couple of times she needed to be woken up to work with him. Carmine said she is making progress with the tongue and lips. He may stop working on that soon and do more oral motor exercises. He thinks the blood pressure medicine is making her sleepy. He spoke to her about the medicine and being sleepy. He told her that the sleepiness is nothing bad and that it is just the medication. He said to tell her that so she doesn’t think there is something wrong and that is why she is tired. She is also on an antibiotic. She ate half prompted and half independent. She had a few coughing fits that made her wake up. She had chicken cutlet and mac and cheese and some cauliflower for lunch. After eating she was awake so Anthony did the leg exercises and as he finished her legs dad came in and Anthony said oh look who is here and she smiled at dad. She then fell asleep.
Mom has a blister under her arm. The CNA put a hot compress under her arm for a cyst and we think she got burnt. They are treating the blister with ointment.
When I came in dad was still there. Mom was out like a light. I told dad to go home. I tried to wake mom and had to resort to opening her eyes with my fingers. Many times this works great and mom stays awake, but today her eyes were all red and blood shot. It was if I had woken her up at 3am! I tried to keep her awake but she just stared into space. I placed a pencil in her hand but there was no reaction. I tried many different tasks but she wasn’t interested. I finally put a brightly colored magazine on her lap tray and she took the page in her hand and looked at the magazine. She then fell asleep and I couldn’t wake her.
I tucked her in, said a prayer and left.
The purpose of optimism is not to predict the future. the purpose of optimism is to create it!
Peace and Love,
~Claud
When Anthony came Carmine and mom’s friend Flo were there waiting for her to be put in the chair. Carmine worked with her and then lunch came. A couple of times she needed to be woken up to work with him. Carmine said she is making progress with the tongue and lips. He may stop working on that soon and do more oral motor exercises. He thinks the blood pressure medicine is making her sleepy. He spoke to her about the medicine and being sleepy. He told her that the sleepiness is nothing bad and that it is just the medication. He said to tell her that so she doesn’t think there is something wrong and that is why she is tired. She is also on an antibiotic. She ate half prompted and half independent. She had a few coughing fits that made her wake up. She had chicken cutlet and mac and cheese and some cauliflower for lunch. After eating she was awake so Anthony did the leg exercises and as he finished her legs dad came in and Anthony said oh look who is here and she smiled at dad. She then fell asleep.
Mom has a blister under her arm. The CNA put a hot compress under her arm for a cyst and we think she got burnt. They are treating the blister with ointment.
When I came in dad was still there. Mom was out like a light. I told dad to go home. I tried to wake mom and had to resort to opening her eyes with my fingers. Many times this works great and mom stays awake, but today her eyes were all red and blood shot. It was if I had woken her up at 3am! I tried to keep her awake but she just stared into space. I placed a pencil in her hand but there was no reaction. I tried many different tasks but she wasn’t interested. I finally put a brightly colored magazine on her lap tray and she took the page in her hand and looked at the magazine. She then fell asleep and I couldn’t wake her.
I tucked her in, said a prayer and left.
The purpose of optimism is not to predict the future. the purpose of optimism is to create it!
Peace and Love,
~Claud
Sunday, May 8, 2011
Mom Update, May 8, 2011, Sunday
Claudia, John, Jean and Ava began the day with mom this morning. Claudia made mom a wheat germ omlette which is mom’s favorite. Mom ate all of her breakfast. Claudia did full range of motion exercises with her but she had fallen asleep. Ava brought her Ukulele and sang a mother’s day song. She played while mom ate. John made mom laugh a few times. John, Jean and Ava left and Claudia tried to do some work with mom but she kept falling asleep. When she woke up, she was not interested in doing anything. She played with the material but wouldn’t do what she was supposed to do.
When Lenny and I arrived today, mom was sitting in bed working with Claudia with the tweezers and the pom poms. She looked at us and smiled when we said, “Happy Mother’s Day.” Shortly after that, Anthony, Con, Anthony Michael and Sam arrived. We all chipped in and bought mom a Nintendo Wii for Mothers Day. We read several articles about how some of the games on the Wii are good for people recovering from a stroke or head injury. The aides came and put mom in the wheelchair when lunch came. The nurse was going to give mom another meal in bed, even though she is supposed to be in the chair to eat. Sammy fed mom and then helped her to feed herself. It was mom’s favorite meal--- liver and onions!! (Yuck in my book! But mom loves it!!). Near the beginning of lunch, mom fell fast asleep. Dad came and joined us around then. While mom slept, we went through everything in her room and straightened it out. Getting ready for the summer months when we will have more time to work with her each day! Then we all left except for dad to celebrate Mothers Day with our individual families.
Terry joined dad later in the afternoon. They said that mom slept until dinner. She ate dinner and then she fell asleep again once she was put back in bed. Lenny and I returned for a while and then we took dad to see Water for Elephants---great movie!! (I saw African Cats yesterday too and it was great). Terry tucked mom in for the night later in the evening. Mom slept the whole time. JoAnn is back! She checked on mom later in the night and found her sleeping soundly.
"I have learned to be content whatever the circumstances." Philippians 4:11
When Lenny and I arrived today, mom was sitting in bed working with Claudia with the tweezers and the pom poms. She looked at us and smiled when we said, “Happy Mother’s Day.” Shortly after that, Anthony, Con, Anthony Michael and Sam arrived. We all chipped in and bought mom a Nintendo Wii for Mothers Day. We read several articles about how some of the games on the Wii are good for people recovering from a stroke or head injury. The aides came and put mom in the wheelchair when lunch came. The nurse was going to give mom another meal in bed, even though she is supposed to be in the chair to eat. Sammy fed mom and then helped her to feed herself. It was mom’s favorite meal--- liver and onions!! (Yuck in my book! But mom loves it!!). Near the beginning of lunch, mom fell fast asleep. Dad came and joined us around then. While mom slept, we went through everything in her room and straightened it out. Getting ready for the summer months when we will have more time to work with her each day! Then we all left except for dad to celebrate Mothers Day with our individual families.
Terry joined dad later in the afternoon. They said that mom slept until dinner. She ate dinner and then she fell asleep again once she was put back in bed. Lenny and I returned for a while and then we took dad to see Water for Elephants---great movie!! (I saw African Cats yesterday too and it was great). Terry tucked mom in for the night later in the evening. Mom slept the whole time. JoAnn is back! She checked on mom later in the night and found her sleeping soundly.
"I have learned to be content whatever the circumstances." Philippians 4:11
Saturday, May 7, 2011
Mom Update, May 7, 2011, Saturday
Great news!! Mom had a 2nd night on the CPAP mode of the vent all night!!! Keep praying. It’s working!!
Dad began the morning with mom. He set her up for the day but she was sleeping. She had eaten breakfast already.
Terry and Dad came back in the afternoon to visit with mom. Mom was sleeping. Dad did mom’s full physical therapy/range of motion exercises. Mom’s aide brought her dinner in and said that mom had a big lunch and ate it all. The aide asked mom if she wanted to feed herself and mom mouthed, “No” so the aide fed her. This aide is a weekend aide, not mom’s usual one. The aide was so gentle and kind with mom while mom was being fed.
After dinner we talked and then Terry and mom did some work with the MEGA BLOCKS. Dad and I went to the movies (The Conspirator great movie). Terry spent the evening with mom. They talked, played with her stuffed animals and watched TV. When mom got tired, Terry tucked mom in for the night.
"Put out into deep water and let down the nets for a catch" Luke 5:4
Dad began the morning with mom. He set her up for the day but she was sleeping. She had eaten breakfast already.
Terry and Dad came back in the afternoon to visit with mom. Mom was sleeping. Dad did mom’s full physical therapy/range of motion exercises. Mom’s aide brought her dinner in and said that mom had a big lunch and ate it all. The aide asked mom if she wanted to feed herself and mom mouthed, “No” so the aide fed her. This aide is a weekend aide, not mom’s usual one. The aide was so gentle and kind with mom while mom was being fed.
After dinner we talked and then Terry and mom did some work with the MEGA BLOCKS. Dad and I went to the movies (The Conspirator great movie). Terry spent the evening with mom. They talked, played with her stuffed animals and watched TV. When mom got tired, Terry tucked mom in for the night.
"Put out into deep water and let down the nets for a catch" Luke 5:4
Friday, May 6, 2011
Mom Update, May 6, 2011, Friday
Jean began the day with mom. He said she had already eaten breakfast and was fast asleep. He tried to wake her but not aggressively because he said he felt bad waking her. She didn’t respond or wake up. He set her up with glasses, hearing aids, lights on…but she didn’t wake up. He did her physical therapy/range of motion exercises but she didn’t wake up. He stayed a while and then left for school.
Anthony arrived mid-morning and found mom out like a light. She could not be woken up. Lunch came and Anthony was able to wake her finally enough to eat. She wouldn’t feed herself but Anthony was able to feed her 2/3 of her lunch before she went to sleep again.
When I arrived this afternoon, mom was in bed asleep again! One of the aides said she was out and couldn’t be woken at all, no matter what they did. Mom’s night CNA (3-11 p.m.) shift said that mom has been up at night at 10:30 p.m. Last night, Mom’s CNA said that mom frightened her badly!! The CNA came in to check on mom and said, “Dotty” and mom answered loudly in her own voice, “What?!!” This was the first time that the CNA heard mom’s voice! I asked the nurse if he thought mom’s medications can be responsible for mom’s sleepiness and shaking. The nurse didn’t know and said to ask the doctor. Mom’s dinner just came and I woke her and she is eating now. Her aide is feeding her but she is awake and eating heartily. Dad arrived and mom smiled at him. The CNA said that she asked mom yesterday, “Who wrote on the white board?” Mom answered her by mouthing, “Kathy.”
Great news!! Mom was on CPAP vent mode (which means no vent assistance for breathing) throughout the night last night!!!
After dinner, we did a crossword puzzle:
Clue: “A Hans Christian Andersen story. Starts with The Ugly….” Mom: “The Ugly Duckling”
Clue: “Cleveland’s lake. Starts with an Eeeee…..Lake Eeeee” Mom: “Lake Erie”
Clue: “Chinese frying pan. You stir fry in it. Starts with a W. A wwww….” Mom: “Wok”
Clue: “If you are tired, you lay down and take a r….” Mom: “Rest”
Clue: “Sheep Herder from Nursery Rhyme…Little…” Mom: “Bo Peep” (then mom recited the entire nursery rhyme with me)
Clue: “Bothersome ones. You always call me this mom” Mom: “Pest”
Clue: “Play a guitar. What do you do when you play a guitar? (I mimed it) Mom: “Strum”
Clue: “Casino city in Nevada. Lots of gambling there. La….” Mom: “Las Vegas”
Clue: “Grimm Tale Siblings. Went in woods and left trail of breadcrumbs. A brother and a sister. A boy and a girl. The girl’s name starts with a G” Mom: “Gretel?” Couldn’t get Hansel
Clue: “Tie up loose…. Starts with an E” Mom: “Ends”
Mom’s eyes began to get droopy and she was falling asleep. So dad and I said a prayer with her and dimmed the lights and turned on the TV.
“I have loved you with an everlasting love” Jeremiah 31:3
Anthony arrived mid-morning and found mom out like a light. She could not be woken up. Lunch came and Anthony was able to wake her finally enough to eat. She wouldn’t feed herself but Anthony was able to feed her 2/3 of her lunch before she went to sleep again.
When I arrived this afternoon, mom was in bed asleep again! One of the aides said she was out and couldn’t be woken at all, no matter what they did. Mom’s night CNA (3-11 p.m.) shift said that mom has been up at night at 10:30 p.m. Last night, Mom’s CNA said that mom frightened her badly!! The CNA came in to check on mom and said, “Dotty” and mom answered loudly in her own voice, “What?!!” This was the first time that the CNA heard mom’s voice! I asked the nurse if he thought mom’s medications can be responsible for mom’s sleepiness and shaking. The nurse didn’t know and said to ask the doctor. Mom’s dinner just came and I woke her and she is eating now. Her aide is feeding her but she is awake and eating heartily. Dad arrived and mom smiled at him. The CNA said that she asked mom yesterday, “Who wrote on the white board?” Mom answered her by mouthing, “Kathy.”
Great news!! Mom was on CPAP vent mode (which means no vent assistance for breathing) throughout the night last night!!!
After dinner, we did a crossword puzzle:
Clue: “A Hans Christian Andersen story. Starts with The Ugly….” Mom: “The Ugly Duckling”
Clue: “Cleveland’s lake. Starts with an Eeeee…..Lake Eeeee” Mom: “Lake Erie”
Clue: “Chinese frying pan. You stir fry in it. Starts with a W. A wwww….” Mom: “Wok”
Clue: “If you are tired, you lay down and take a r….” Mom: “Rest”
Clue: “Sheep Herder from Nursery Rhyme…Little…” Mom: “Bo Peep” (then mom recited the entire nursery rhyme with me)
Clue: “Bothersome ones. You always call me this mom” Mom: “Pest”
Clue: “Play a guitar. What do you do when you play a guitar? (I mimed it) Mom: “Strum”
Clue: “Casino city in Nevada. Lots of gambling there. La….” Mom: “Las Vegas”
Clue: “Grimm Tale Siblings. Went in woods and left trail of breadcrumbs. A brother and a sister. A boy and a girl. The girl’s name starts with a G” Mom: “Gretel?” Couldn’t get Hansel
Clue: “Tie up loose…. Starts with an E” Mom: “Ends”
Mom’s eyes began to get droopy and she was falling asleep. So dad and I said a prayer with her and dimmed the lights and turned on the TV.
“I have loved you with an everlasting love” Jeremiah 31:3
Thursday, May 5, 2011
Mom Update, May 5, 2011, Thursday
I decided not to rush to get to mom this morning since she has been so sleepy throughout the day over the last few days. So, I arrived there at 9:15 a.m. Her nurse saw me in the hallway and said, “Guess who’s awake today??!! Totally opposite from the last few days!” The nurse told me that mom was very agitated this morning and trying to rip her mitts off her hands. The nurse said she would remove them for mom during breakfast and washing her up while the CNAs were there, but then the nurse did something else. When the nurse returned to mom, mom mouthed, “I thought you were taking these off?” and thrust her mitted hands toward the nurse impatiently!! Mom was annoyed at me too. She pulled her ears over and over in an impatient way---she wanted her hearing aids in. Then she pulled at her mitts and tangled her hands in the process---she wanted them off. Then mom pointed to her eyes and made a face at me—she wanted her glasses!! Wow!! What a good night, day, night…of sleep can do!! I gave mom some juice and she drank the whole container. I asked her if she wanted to do a crossword puzzle and she said yes so I handed her the book. She quickly began to thumb through it and mouthed, “There’s none in here”---I told her to look again and she did. She told me over and over, “I keep looking and I can’t find one.” We found one and began.
The respiratory person said that mom was put on the vent mode SMIV last night again. The respiratory person tried to put mom on CPAP this morning early but mom’s total rate went into the high 40s (not awful but the respiratory person thought so) so mom was put back on SMIV until I came. She is on CPAP now.
Back to the crossword puzzle:
Clue: “An opera solo” Mom: “I don’t remember the name of it”
Kathy: “It starts with an A…” Mom: “Oh! Aria!!!” Then she spelled it for me!!
Clue: “___ Baba” Mom: “Ali”
Clue: “Ex Supreme Court Justice ___ Day O’Connor” Mom: “Sandra”
Clue: “Take an apartment” Mom: “I don’t know”
Kathy: “Starts with an R…” Mom: “An R?!!!!!” with an annoyed look.
Kathy: “If you don’t buy a house, you….” Mom: “Sublet” !!!!!!
Clue: “Sidewalk border. Starts with a C” Mom: “Curb?”
After mom was dressed and washed and put in the wheelchair, she was tired. She kept falling asleep on and off. In between, we continued with the crossword puzzle.
Clue: “flower stalk. Starts with an S” Mom: “Stem?”
Lunch came and mom fed herself!!! I used minimal hand over hand prompting and I started her out with the first 3 spoonfuls of food, but she fed herself about 2/3 of the meal independently. Mom had chicken chunks, rice, gravy, carrots and broccoli, and pears. She drank 2 containers of water and 1 of juice. We have been trying to hydrate her well to promote alertness and healing. Mom followed the nurse’s directions while her trach care was done. After that, mom fell asleep for about 45 minutes. I cleaned her closet while she slept.
Dad came and woke mom but she was sleepy and not very alert even though her eyes were open. I tried to do some writing with the markers on the white board, mom wasn’t interested. I gave her the sewing card and lace and, while she didn’t lace anything, she enjoyed holding it and exploring it. Dad brought her a Mother’s Day card from Laura, Barry, Mikayla, Kevin and Joshua. Mom held the card and read parts of it, but she thought that the card was from JoAnn. I read it with her afterward. I left mom with dad and they were looking at the baseball cards from Anthony.
Mom’s CNA got mom new, clean mitts, clean posies (the small pillows she holds in the mitts so her hands don’t get stiff and curled), and also asked for a larger wheelchair for mom. The one mom has is tight and small.
Dad said mom was awake all afternoon. Dad said that mom was very talkative this afternoon with him. She was quieter with John came to be with mom tonight. When he arrived, dad was in the middle of doing full physical therapy/range of motion with mom. Mom turned her head to John as though to greet him and was very alert and aware of his presence when he arrived. She acknowledged John. She was very attentive to John the whole night. They watched TV and then mom ate dinner. The CNA fed mom dinner. Mom ate her whole meal. She was put into bed after dinner. Mom was listening to all the conversations around her very attentively. Dad left and kissed mom and mom kissed him back. John took all the METS cards out and slowly read the information on each one and joked with mom saying, “You know I love you a lot because I am doing the METS cards with you.” She didn’t laugh but she got the joke. She was then grabbing the trach line a lot tonight!!! John had to take her hands off it a lot. John figured he would occupy her hands so he gave her the ball of string and he tangled it on the fingers of one of her hands and she became intensely occupied with removing the string from her fingers. Then he gave her commands to follow---“give me the ball of string”… then John did the Magna Doodle with mom. He asked her to draw pictures and he drew them for her. He made her laugh. John put the Magna Doodle in mom’s left hand and the pencil for it in her right hand and he began a picture of a face and mom made a mark, he doesn’t think on purpose, but he made a big deal about it saying, “Oh, you gave me hair!!” John made mom drink juice and mom reached for it a few times too. She grabbed it and put it to her mouth and he helped her tip it to get liquid in her mouth. Then John did the sewing card with mom. He put the lace in the hole and then mom pulled it through when John did it hand over hand. Mom got tired and fell asleep so John tucked her in and prayed and then shut the lights.
"Deep in your hearts you know that every promise of the LORD your God has come true." Joshua 23:14
The respiratory person said that mom was put on the vent mode SMIV last night again. The respiratory person tried to put mom on CPAP this morning early but mom’s total rate went into the high 40s (not awful but the respiratory person thought so) so mom was put back on SMIV until I came. She is on CPAP now.
Back to the crossword puzzle:
Clue: “An opera solo” Mom: “I don’t remember the name of it”
Kathy: “It starts with an A…” Mom: “Oh! Aria!!!” Then she spelled it for me!!
Clue: “___ Baba” Mom: “Ali”
Clue: “Ex Supreme Court Justice ___ Day O’Connor” Mom: “Sandra”
Clue: “Take an apartment” Mom: “I don’t know”
Kathy: “Starts with an R…” Mom: “An R?!!!!!” with an annoyed look.
Kathy: “If you don’t buy a house, you….” Mom: “Sublet” !!!!!!
Clue: “Sidewalk border. Starts with a C” Mom: “Curb?”
After mom was dressed and washed and put in the wheelchair, she was tired. She kept falling asleep on and off. In between, we continued with the crossword puzzle.
Clue: “flower stalk. Starts with an S” Mom: “Stem?”
Lunch came and mom fed herself!!! I used minimal hand over hand prompting and I started her out with the first 3 spoonfuls of food, but she fed herself about 2/3 of the meal independently. Mom had chicken chunks, rice, gravy, carrots and broccoli, and pears. She drank 2 containers of water and 1 of juice. We have been trying to hydrate her well to promote alertness and healing. Mom followed the nurse’s directions while her trach care was done. After that, mom fell asleep for about 45 minutes. I cleaned her closet while she slept.
Dad came and woke mom but she was sleepy and not very alert even though her eyes were open. I tried to do some writing with the markers on the white board, mom wasn’t interested. I gave her the sewing card and lace and, while she didn’t lace anything, she enjoyed holding it and exploring it. Dad brought her a Mother’s Day card from Laura, Barry, Mikayla, Kevin and Joshua. Mom held the card and read parts of it, but she thought that the card was from JoAnn. I read it with her afterward. I left mom with dad and they were looking at the baseball cards from Anthony.
Mom’s CNA got mom new, clean mitts, clean posies (the small pillows she holds in the mitts so her hands don’t get stiff and curled), and also asked for a larger wheelchair for mom. The one mom has is tight and small.
Dad said mom was awake all afternoon. Dad said that mom was very talkative this afternoon with him. She was quieter with John came to be with mom tonight. When he arrived, dad was in the middle of doing full physical therapy/range of motion with mom. Mom turned her head to John as though to greet him and was very alert and aware of his presence when he arrived. She acknowledged John. She was very attentive to John the whole night. They watched TV and then mom ate dinner. The CNA fed mom dinner. Mom ate her whole meal. She was put into bed after dinner. Mom was listening to all the conversations around her very attentively. Dad left and kissed mom and mom kissed him back. John took all the METS cards out and slowly read the information on each one and joked with mom saying, “You know I love you a lot because I am doing the METS cards with you.” She didn’t laugh but she got the joke. She was then grabbing the trach line a lot tonight!!! John had to take her hands off it a lot. John figured he would occupy her hands so he gave her the ball of string and he tangled it on the fingers of one of her hands and she became intensely occupied with removing the string from her fingers. Then he gave her commands to follow---“give me the ball of string”… then John did the Magna Doodle with mom. He asked her to draw pictures and he drew them for her. He made her laugh. John put the Magna Doodle in mom’s left hand and the pencil for it in her right hand and he began a picture of a face and mom made a mark, he doesn’t think on purpose, but he made a big deal about it saying, “Oh, you gave me hair!!” John made mom drink juice and mom reached for it a few times too. She grabbed it and put it to her mouth and he helped her tip it to get liquid in her mouth. Then John did the sewing card with mom. He put the lace in the hole and then mom pulled it through when John did it hand over hand. Mom got tired and fell asleep so John tucked her in and prayed and then shut the lights.
"Deep in your hearts you know that every promise of the LORD your God has come true." Joshua 23:14
Wednesday, May 4, 2011
Mom Update, May 4, 2011, Wednesday
Lenny began the day with mom this morning and he found her sound asleep and out like a light. He and the CNA and the nurse tried to wake mom but they couldn’t. Everyone told Lenny that mom was OK and just soundly sleeping---based on her blood pressure and CO2 levels. He did mom’s full physical therapy/range of motion exercises while she slept anyway. Mom slept through breakfast. She didn’t eat it. She didn’t eat dinner last night either because she was so sleepy.
Anthony came next and found mom in bed still and asleep as well. The CNA came to give mom a shower before lunch so mom would wake up and eat lunch. Mom went in her chair after her shower but slept. When lunch came, the CNA and Anthony woke mom and fed her. She had string beans, breaded chicken cutlet…and she ate the entire lunch! Anthony brought her a cruller from Dunkin Donuts and she ate all of that too.
Dad came next and mom was still awake with Anthony there. Shortly after Anthony left, mom fell asleep again. She slept most of the afternoon according to dad. Maureen, mom’s friend, came to see mom this afternoon. Dad said that mom slept through most of the visit.
When I arrived, Maureen was still there with dad and mom was awake. She was quiet and pretty unresponsive but she was staring at Maureen as she talked. Mom was busy wiping the table with a tissue very intently. Always cleaning!!! After Maureen left, I had mom drink some thickened juice and water. I asked mom if she wanted to do the jigsaw puzzle with me and she mouthed, “OK.” So I tried to do the jigsaw puzzle that Claudia bought for mom (100 pieces), but it was too hard for mom. Even still, mom tried to move the pieces around. She wasn’t even close with her estimations of where each piece went, but she knew the concept and what the puzzle was all about. She would move a piece close to the others and then, at other times, she would study the pieces as she lifted them. I modeled how to complete the puzzle and showed her how to see where each piece went. She watched me closely. At one point, there was an empty chair next to mom and she kept reaching for it. I asked her what she was doing and mom said, “I’m fixing it.” After a while, I tried to do the pom poms with the large, oversized, plastic tweezers and the container. Mom and I used the tweezers hand over hand. She picked up 2 pom poms on her own. She also tried to place the pom poms on the top of the container using her hand mostly. I left for work as mom’s dinner came. Mom was put on a 5 day dose of antibiotics for the cyst under her arm…dad said she gets the antibiotic 4 times a day. I researched her blood pressure meds again and found that one of the side effects of one med is shaking and a side effect of another is drowsiness…. I will talk to the doctor about it the next time I see him.
Claudia saw mom tonight. Mom was awake and done with dinner when Claudia arrived. Claudia did mom’s full physical therapy/range of motion exercises really well. Then Claudia did a jigsaw puzzle with mom too!!! (great minds think alike!!). Claudia did the puzzle the same way that I did too!! Then they did word searches using the oversized print books. They did the word search hand over hand. Mom was engrossed with both activities. Claudia had mom drink a whole glass of lemon water while she was there too. Claudia got tired finally so she tucked mom in for the night and prayed and left.
God, your God, will outdo himself in making things go well for you...Deuteronomy 30:9
Anthony came next and found mom in bed still and asleep as well. The CNA came to give mom a shower before lunch so mom would wake up and eat lunch. Mom went in her chair after her shower but slept. When lunch came, the CNA and Anthony woke mom and fed her. She had string beans, breaded chicken cutlet…and she ate the entire lunch! Anthony brought her a cruller from Dunkin Donuts and she ate all of that too.
Dad came next and mom was still awake with Anthony there. Shortly after Anthony left, mom fell asleep again. She slept most of the afternoon according to dad. Maureen, mom’s friend, came to see mom this afternoon. Dad said that mom slept through most of the visit.
When I arrived, Maureen was still there with dad and mom was awake. She was quiet and pretty unresponsive but she was staring at Maureen as she talked. Mom was busy wiping the table with a tissue very intently. Always cleaning!!! After Maureen left, I had mom drink some thickened juice and water. I asked mom if she wanted to do the jigsaw puzzle with me and she mouthed, “OK.” So I tried to do the jigsaw puzzle that Claudia bought for mom (100 pieces), but it was too hard for mom. Even still, mom tried to move the pieces around. She wasn’t even close with her estimations of where each piece went, but she knew the concept and what the puzzle was all about. She would move a piece close to the others and then, at other times, she would study the pieces as she lifted them. I modeled how to complete the puzzle and showed her how to see where each piece went. She watched me closely. At one point, there was an empty chair next to mom and she kept reaching for it. I asked her what she was doing and mom said, “I’m fixing it.” After a while, I tried to do the pom poms with the large, oversized, plastic tweezers and the container. Mom and I used the tweezers hand over hand. She picked up 2 pom poms on her own. She also tried to place the pom poms on the top of the container using her hand mostly. I left for work as mom’s dinner came. Mom was put on a 5 day dose of antibiotics for the cyst under her arm…dad said she gets the antibiotic 4 times a day. I researched her blood pressure meds again and found that one of the side effects of one med is shaking and a side effect of another is drowsiness…. I will talk to the doctor about it the next time I see him.
Claudia saw mom tonight. Mom was awake and done with dinner when Claudia arrived. Claudia did mom’s full physical therapy/range of motion exercises really well. Then Claudia did a jigsaw puzzle with mom too!!! (great minds think alike!!). Claudia did the puzzle the same way that I did too!! Then they did word searches using the oversized print books. They did the word search hand over hand. Mom was engrossed with both activities. Claudia had mom drink a whole glass of lemon water while she was there too. Claudia got tired finally so she tucked mom in for the night and prayed and left.
God, your God, will outdo himself in making things go well for you...Deuteronomy 30:9
Tuesday, May 3, 2011
mom Update, May 3, 2011, Tuesday
Ava started the day with mom this morning. She said that mom was asleep when she arrived and unresponsive but Ava was able to wake mom to eat breakfast. Mom fell asleep again after breakfast. Ava did her full physical therapy/range of motion exercises too.
When I came to mom this morning, she was asleep but I woke her. I made her drink some of the backed up containers of juice and water and milk (6 total). She drank 1 container of water and 2 containers of juice. She slept in between! I straightened her room while she slept. In between sleeping, we talked and she drank some more. Last night, the head of respiratory left mom on CPAP mode of the vent all night…or he was going to. Evidently, around 1:30 a.m., mom’s numbers rose “a little” so the night respiratory therapist put her back on the SMIV mode of the vent again. The night respiratory people tend to be very cautious. The CNAs came in to wash her and dress her for the day and get her into her chair. Mom’s CNA has been out sick…for the last month…she’s back now…thank God. Anthony joined me after mom was dressed and in her chair. Lunch came and mom was sleepy again. Ant and I had all to do to keep her awake to eat. She fed herself about 5 forkfuls of food (turkey, carrots, potatoes and gravy), but we had to feed her the rest. In between eating, I showed mom a picture of her friend, Dotty. I asked mom who it was, and she mouthed the friend’s first and last name!! Anthony had some great techniques for helping mom lift and drink from the cup. She grabs the cup, and he verbally prompts her while putting just one of his fingers under the bottom of the cup in order to assist her with lifting the cup and tilting it at her lips. Mom kept falling asleep between bites…we finally gave up after asking her if she wanted more and mom said, “I’m done.” After Anthony left, mom slept for a long while. Mom’s CNA found an absess under mom’s arm so the physician’s assistant came to check it today. They will be putting warm compresses on it for now. Mom had a chest x-ray and blood work yesterday to see if anything is wrong that is causing her to sleep so much the last 2 days. The chest x-ray came out fine. No results on the blood work yet.
Con and Sammy called tonight to say that mom was very “Mushy” tonight…quiet. They tried to do things with her because she was awake but mom just stared at things and watched TV. Gina came with Con and Sam too. Gina had her camera with her and they took a picture of mom and told her to say, “Cheese” and mom mouthed it. Mom didn’t go into her bed until 8:00 because there was a problem with the lift—the battery wasn’t working. After she was in bed, they prayed with her and kissed her and tucked her in for the night.
"As a mother comforts her child, so will I comfort you" Isaiah 66:13
When I came to mom this morning, she was asleep but I woke her. I made her drink some of the backed up containers of juice and water and milk (6 total). She drank 1 container of water and 2 containers of juice. She slept in between! I straightened her room while she slept. In between sleeping, we talked and she drank some more. Last night, the head of respiratory left mom on CPAP mode of the vent all night…or he was going to. Evidently, around 1:30 a.m., mom’s numbers rose “a little” so the night respiratory therapist put her back on the SMIV mode of the vent again. The night respiratory people tend to be very cautious. The CNAs came in to wash her and dress her for the day and get her into her chair. Mom’s CNA has been out sick…for the last month…she’s back now…thank God. Anthony joined me after mom was dressed and in her chair. Lunch came and mom was sleepy again. Ant and I had all to do to keep her awake to eat. She fed herself about 5 forkfuls of food (turkey, carrots, potatoes and gravy), but we had to feed her the rest. In between eating, I showed mom a picture of her friend, Dotty. I asked mom who it was, and she mouthed the friend’s first and last name!! Anthony had some great techniques for helping mom lift and drink from the cup. She grabs the cup, and he verbally prompts her while putting just one of his fingers under the bottom of the cup in order to assist her with lifting the cup and tilting it at her lips. Mom kept falling asleep between bites…we finally gave up after asking her if she wanted more and mom said, “I’m done.” After Anthony left, mom slept for a long while. Mom’s CNA found an absess under mom’s arm so the physician’s assistant came to check it today. They will be putting warm compresses on it for now. Mom had a chest x-ray and blood work yesterday to see if anything is wrong that is causing her to sleep so much the last 2 days. The chest x-ray came out fine. No results on the blood work yet.
Con and Sammy called tonight to say that mom was very “Mushy” tonight…quiet. They tried to do things with her because she was awake but mom just stared at things and watched TV. Gina came with Con and Sam too. Gina had her camera with her and they took a picture of mom and told her to say, “Cheese” and mom mouthed it. Mom didn’t go into her bed until 8:00 because there was a problem with the lift—the battery wasn’t working. After she was in bed, they prayed with her and kissed her and tucked her in for the night.
"As a mother comforts her child, so will I comfort you" Isaiah 66:13
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