Mom was moved to the 2nd floor, solarium bed 3, at about 10 p.m. last night. Visiting hours are now from
12-8 p.m. Dad saw mom from 12-3 and said she would open her eyes and look at him, hold his hand or finger, and go back to sleep. He spoke to the doctor about the bruise on mom's arm and the doctor said it looks like something that happened when they took blood (it doesn't look that way to me but...). The doctor said she is on a small dose of heprin so he doubts it is from that. Dad forgot to ask about the brown under her right thumb nail and the site on her upper left arm that looks like an injection was given to her. The doctor said that, given all mom has been through, it is still typical for her to be so sleepy. He feels she is sleeping and not in a coma (thank the Lord). The doctor told dad that mom will be in the hospital on the 2nd floor until Monday because the facility is not accepting any patients until then.
Anthony and Con came around 3 to see mom and dad left to go have dinner and check on Aunt Sophie. They said that mom mostly slept the whole time they were there but she did smile at Con once.
Dad, Claudia and I came back to see mom around 5:30-6:00 (Claudia and I treated ourselves to a mini spa afternoon---massage and pool....ahhhh....). Mom became more awake and alert then. She smiled at Claudia and mouthed, "I love you" as well. After everyone but dad and I left, mom was mouthing a lot of sentences:
"I feel, I feel..." "I wanna, I wanna go to the bathroom" and she also told me, "I love you" and when she opened her eyes at one point, she mouthed, "Pray?" so we did (even though we had already). It looks like she is dreaming when she falls asleep and begins to talk/mouth things in her sleep.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day" 2 Corinthians 4:16
Thursday, December 30, 2010
Wednesday, December 29, 2010
Mom Update, December 30, 2010, Wednesday
Well...dad went to see mom during the new visiting hours and was told that they never moved her from the SICU because they suddenly had no bed for her!!! Ugh. He was then only allowed to see her for a few minutes and she was really tired and slept the whole time. She is no longer on the antibiotic. Her vitals are good, she is physically healthy. We don't know if she is still on the heprin or not but she has a huge bruise the size of her entire lower right arm on the underside. Her right thumb under the entire nail is also brown... bruised looking. We also don't know if she is still back on the Blood Pressure medicine either. These 2 things could make her sleepy. We showed the nurse and asked for the doctor to see her asap.
Dad, Claudia, Aunt Sophie and I saw mom this afternoon. She mostly slept but kept her eyes open with an assist from us initially for a few minutes and stared at us. She was extremely tired and couldn't really keep her eyes open. She did try to kiss my hand when I asked her to (not big pucker but a definite attempt).
This evening, Ant, Con, Sam, Claud, Dad and I saw mom. Eyes open with assist from us and very present at times. Looked like she was trying to read and talk too. The nurse said mom was being moved to the 4th floor tonight...we told her we heard that already!! hahaha! At one point, Con asked mom to smile and mom said OUT LOUD IN A NORMAL VOICE--"What do you mean?" Claud and Con were there and flipped!! She went to sleep shortly thereafter...out like a light. We all prayed around her bed with her and blessed her and left.
"The Word gave life to everything that was created, and his life brought light to everyone." John 1:4
Dad, Claudia, Aunt Sophie and I saw mom this afternoon. She mostly slept but kept her eyes open with an assist from us initially for a few minutes and stared at us. She was extremely tired and couldn't really keep her eyes open. She did try to kiss my hand when I asked her to (not big pucker but a definite attempt).
This evening, Ant, Con, Sam, Claud, Dad and I saw mom. Eyes open with assist from us and very present at times. Looked like she was trying to read and talk too. The nurse said mom was being moved to the 4th floor tonight...we told her we heard that already!! hahaha! At one point, Con asked mom to smile and mom said OUT LOUD IN A NORMAL VOICE--"What do you mean?" Claud and Con were there and flipped!! She went to sleep shortly thereafter...out like a light. We all prayed around her bed with her and blessed her and left.
"The Word gave life to everything that was created, and his life brought light to everyone." John 1:4
Tuesday, December 28, 2010
Mom Update, December 28, 2010, Tuesday
Claudia and Dad saw mom this morning at the 11:00 visit. She was sleepy but did open her eyes for them. She raised her arm for them when they asked her to (in front of the doctor--she wouldn't do it for him). She also made gutteral sounds seemingly in response to dad's talking to her (brief but unlike any sounds she ever made). Her eyes were open when they came to see her. The surgeon came to see her and said that he would have another x-ray taken of her lung later in the day to see if the tube in her lung can be removed because her lung is no longer draining (a good thing). The infectious disease doctor saw mom while they were there too and said that she has a bacteria in her urine that has colonized (not a bad thing...it is just there). It is not causing an infection (no fever and white blood cell count normal). He also said all her respiratory signs look good and oxygen levels look good too. He said that the +3 in the sputum doesn't mean that there is an infection deep in her lungs like a pneumonia, but because she came in with hypertoxia??? (spelling???) like she did, they treat her with the same type of medication as someone with pnuemonia as a preventative measure. They look at x-rays (clear) and if she has a fever (she doesn't..this is all good)...so they make deductions. Sometimes when a trach is in, the place where the hole is can become inflamed and infected at the site. He feels that is what we are looking at and not an infection deep in the lung...but a more, upper, around the site type of infection---given all the data that is analyzed. He feels that he has every confidence that we can get mom back to where she was before this all happened. He has faith that she can get right back to where she was.
Dad, Anthony, Con and I saw mom this afternoon. She was sleepy and really just slept. She looked at us a few times and squeezed dad's finger but only looked at us when we gave her an "assist" opening her eyes (we opened them and then she kept them open a few minutes or seconds). The x-ray of her lung was taken while we were there.
Anthony, Con and I saw mom this evening and were told that her x-ray looked good and her lung is doing fine. She kept her eyes open almost 40 minutes but on and off and only with "assists" from us. She focused on our faces and turned her head to the opposite side of the bed to see Anthony 2-3 times. She tried to smile about 3 times and also tried to blow me kisses in imitation (very mild, slight attempts but attempts nonetheless). She was very, very tired. Con showed mom her shirt and asked what it said and mom stared at the words. We were told that they are moving mom out of SICU tonight and that she will now be on the 4th floor in a regular room. Visiting hours are now open from 12-8:00 p.m. to anyone. We don't have the room number yet so just ask at the desk.
You know, it's funny (maybe that's a poor word to use..) but one of the things I was going to do this winter break was go back over all these updates to chart and recall mom's progress so far...mainly, because when you are with her every day working with her, you don't see the progress. What can I say now? We are back to standing by the bed and asking her to open her eyes and trying to think of things to say to let her know we are with her. I suddenly see all the progress. Well, back to box 1. We won't give up. And...we won't quit 5 minutes before the miracle happens.
"You need to persevere so that when you have done the will of God, you will receive what he has promised." Hebrews 10:36
Dad, Anthony, Con and I saw mom this afternoon. She was sleepy and really just slept. She looked at us a few times and squeezed dad's finger but only looked at us when we gave her an "assist" opening her eyes (we opened them and then she kept them open a few minutes or seconds). The x-ray of her lung was taken while we were there.
Anthony, Con and I saw mom this evening and were told that her x-ray looked good and her lung is doing fine. She kept her eyes open almost 40 minutes but on and off and only with "assists" from us. She focused on our faces and turned her head to the opposite side of the bed to see Anthony 2-3 times. She tried to smile about 3 times and also tried to blow me kisses in imitation (very mild, slight attempts but attempts nonetheless). She was very, very tired. Con showed mom her shirt and asked what it said and mom stared at the words. We were told that they are moving mom out of SICU tonight and that she will now be on the 4th floor in a regular room. Visiting hours are now open from 12-8:00 p.m. to anyone. We don't have the room number yet so just ask at the desk.
You know, it's funny (maybe that's a poor word to use..) but one of the things I was going to do this winter break was go back over all these updates to chart and recall mom's progress so far...mainly, because when you are with her every day working with her, you don't see the progress. What can I say now? We are back to standing by the bed and asking her to open her eyes and trying to think of things to say to let her know we are with her. I suddenly see all the progress. Well, back to box 1. We won't give up. And...we won't quit 5 minutes before the miracle happens.
"You need to persevere so that when you have done the will of God, you will receive what he has promised." Hebrews 10:36
Monday, December 27, 2010
Mom Update, December 27, 2010, Monday
I saw mom at 11 a.m. this morning and she was sound asleep with an occasional furrowed brow. The nurses said she had a good, peaceful night and slept well. I saw the associate of the pulmenologist while I was there and he said that the latest chest x-ray showed that her lung is doing well. She hasn't needed to use the support from the machine for her lung in 24 hours. He felt that the surgeon would be removing the tube in her lung either later today or tomorrow and that they would monitor her a bit and then send her back to the facility. I prayed over mom and left.
Claudia, Con, Dad, and Anthony and Terry came to see mom this afternoon. I arrived there late (Lenny and I went to the facility to clean up mom's room and take down the Christmas stuff and put up some winter things). When I arrived, Claudia said another doctor (the general MD) saw them all and said that the tube would be removed from her lung either tomorrow or Wednesday and that mom would remain in SICU without the tube and be monitored (length of time undetermined) and then be put into a regular room for monitoring for at least another 24 hours before being returned to the facility. So it seems like she may be back at the facility by Thursday, Friday, or Saturday??? I am concerned because mom's current room/bed is only allowed to be held, according to Medicaid, for 14 days per 12 month period...this stay alone will be 7 days tomorrow and could end up being 10 or more. This means that, should there be another hospital stay (God forbid) in the next 10 months, mom's room could be changed again or she could be forced to leave that facility altogether and moved elsewhere. While moving elsewhere seems like a good thing, it isn't; not as long as mom is on the vent. We need to get her off the vent ASAP!!! Then we can move her almost anywhere we want. We also need to get her to follow commands as well---if she does both these things, she can go anywhere and get therapies too. Otherwise, while on the vent, mom could end up in a facility that does not aggressively try to wean her from the vent---the place she is in now supposedly does aggressive weaning. Mom's eyes were open and she was awake for the most part of the visit. She occasionally looked at us but also looked away (to the side) or closed her eyes momentarily. She appeared to be very alert when Claudia and Dad spoke to her--looking at them with a glow about her face and eyes. She didn't look at me during that visit.
While Lenny and I straightened mom's room and cleaned things up and reorganized the room, some of the CNAs, and nurses came to see how mom was. I have to admit that it was difficult to talk to them or relay the message because I kept thinking that none of this had to happen if only the people on call that morning had paid attention to her preliminary alarms. I know that most of the people we spoke to today were the "good guys" but it was hard. They all listened and offered sympathy and support. Lenny and I asked for a mop for the floor because it was filthy and one of the nurses said he'd call housekeeping or clean the floor himself before he let us do it. After it was "cleaned," it was still filthy so Lenny and I cleaned it ourselves with wipes. We set everything up, dusted... One of mom's old CNAs from the other hallway (before she was moved here) said that she'd been thinking about us all nonstop and she asked if it was OK to visit mom in the hospital. I was so touched by this. We told it was fine to visit, so she's going tomorrow. Evidently, it appears that the story of that morning and what happened that day is a big secret. It also appears that many of the nurses and CNAs don't understand that mom was moved from one hallway to another (new room in November) due to facility policy and not because we requested it. I felt terrible to learn that they thought we asked to move her. I explained we had no choice. They all asked us to move her back to them in the other hallway somehow. I explained that it isn't up to us.
Tonight, Lenny, and I returned to see mom at 8 p.m. Anthony, Con, Sammy, Claudia and Dad were all there already. Mom was very sleepy tonight. She did open her eyes when prompted and sometimes focused on us but mostly slept. Claudia played some "easy listening" music on her IPOD while we visited with mom.
"Therefore, I tell you whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24
Claudia, Con, Dad, and Anthony and Terry came to see mom this afternoon. I arrived there late (Lenny and I went to the facility to clean up mom's room and take down the Christmas stuff and put up some winter things). When I arrived, Claudia said another doctor (the general MD) saw them all and said that the tube would be removed from her lung either tomorrow or Wednesday and that mom would remain in SICU without the tube and be monitored (length of time undetermined) and then be put into a regular room for monitoring for at least another 24 hours before being returned to the facility. So it seems like she may be back at the facility by Thursday, Friday, or Saturday??? I am concerned because mom's current room/bed is only allowed to be held, according to Medicaid, for 14 days per 12 month period...this stay alone will be 7 days tomorrow and could end up being 10 or more. This means that, should there be another hospital stay (God forbid) in the next 10 months, mom's room could be changed again or she could be forced to leave that facility altogether and moved elsewhere. While moving elsewhere seems like a good thing, it isn't; not as long as mom is on the vent. We need to get her off the vent ASAP!!! Then we can move her almost anywhere we want. We also need to get her to follow commands as well---if she does both these things, she can go anywhere and get therapies too. Otherwise, while on the vent, mom could end up in a facility that does not aggressively try to wean her from the vent---the place she is in now supposedly does aggressive weaning. Mom's eyes were open and she was awake for the most part of the visit. She occasionally looked at us but also looked away (to the side) or closed her eyes momentarily. She appeared to be very alert when Claudia and Dad spoke to her--looking at them with a glow about her face and eyes. She didn't look at me during that visit.
While Lenny and I straightened mom's room and cleaned things up and reorganized the room, some of the CNAs, and nurses came to see how mom was. I have to admit that it was difficult to talk to them or relay the message because I kept thinking that none of this had to happen if only the people on call that morning had paid attention to her preliminary alarms. I know that most of the people we spoke to today were the "good guys" but it was hard. They all listened and offered sympathy and support. Lenny and I asked for a mop for the floor because it was filthy and one of the nurses said he'd call housekeeping or clean the floor himself before he let us do it. After it was "cleaned," it was still filthy so Lenny and I cleaned it ourselves with wipes. We set everything up, dusted... One of mom's old CNAs from the other hallway (before she was moved here) said that she'd been thinking about us all nonstop and she asked if it was OK to visit mom in the hospital. I was so touched by this. We told it was fine to visit, so she's going tomorrow. Evidently, it appears that the story of that morning and what happened that day is a big secret. It also appears that many of the nurses and CNAs don't understand that mom was moved from one hallway to another (new room in November) due to facility policy and not because we requested it. I felt terrible to learn that they thought we asked to move her. I explained we had no choice. They all asked us to move her back to them in the other hallway somehow. I explained that it isn't up to us.
Tonight, Lenny, and I returned to see mom at 8 p.m. Anthony, Con, Sammy, Claudia and Dad were all there already. Mom was very sleepy tonight. She did open her eyes when prompted and sometimes focused on us but mostly slept. Claudia played some "easy listening" music on her IPOD while we visited with mom.
"Therefore, I tell you whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24
Sunday, December 26, 2010
Mom Update, December 26, 2010, Sunday
Anthony, Claudia and Dad saw mom this morning and said she didn't look peaceful and had a wrinkle in her brow. They played music on the IPOD the whole time they were there. At times, the music seemed to calm her. They played calm tunes and talked to her. They turned on the TV when they left and asked the nurses not to leave it on all day and night--alternate it. Her right hand was swollen with edema so they asked the nurses to elevate her arms and they did. They checked her legs and feet and they were good--no swelling. She responded to them touching and tickling her feet. She also seemed to be swallowing and able to lick her lips and no drooling at all. Claudia said they'd stay around in the waiting room until the doctor comes tomorrow so they can ask how much longer she will be there. All her vital signs are great. She is physically stable. Though I offered to have dad and/or anyone else stay at my house through the storm so they could go see mom (I am literally 5 minutes away--2 1/2 miles), he wouldn't do it. He went home to be with Terry and Aunt Sophie. Dad said he wouldn't come back to see mom tonight and would probably drive out tomorrow morning to see her.
I dare say that the miracle we are praying for happened this afternoon when Lenny and I saw mom at 4:00 p.m. (wearing masks and rubber gloves--I am still not 100% better and neither is he). We walked in to find the TV on and mom lying in bed with her eyes open. We walked to the bed and I said, "Hey Momma!!! It's me, Kathy!!" and waved to her. She immediately turned her face to me and looked right in my eyes!!!! AND SMILED AT US!!!! She kept looking from me to Lenny and back again (while we were on the same side of the bed---when Lenny went to the other side of the bed and called her, she didn't respond or look there). She kept smiling at us and her face seemed to light up each time she looked at us. We asked her if she was tired and she seemed to say, "Yup" and she also said "Yup" when we asked her if she felt good. She looked like she was trying to talk to us as we talked to her because she moved her mouth a lot as we talked. She fell asleep on and off in between smiling at us. We only stayed about 15 minutes and told her we loved her and we'd be back soon.
So far, I don't think Lenny and I will return to see her tonight at 8:00 p.m.
"Accept my prayer as incense offered to you, and my upraised hands as an evening offering." Psalm 141:2
I dare say that the miracle we are praying for happened this afternoon when Lenny and I saw mom at 4:00 p.m. (wearing masks and rubber gloves--I am still not 100% better and neither is he). We walked in to find the TV on and mom lying in bed with her eyes open. We walked to the bed and I said, "Hey Momma!!! It's me, Kathy!!" and waved to her. She immediately turned her face to me and looked right in my eyes!!!! AND SMILED AT US!!!! She kept looking from me to Lenny and back again (while we were on the same side of the bed---when Lenny went to the other side of the bed and called her, she didn't respond or look there). She kept smiling at us and her face seemed to light up each time she looked at us. We asked her if she was tired and she seemed to say, "Yup" and she also said "Yup" when we asked her if she felt good. She looked like she was trying to talk to us as we talked to her because she moved her mouth a lot as we talked. She fell asleep on and off in between smiling at us. We only stayed about 15 minutes and told her we loved her and we'd be back soon.
So far, I don't think Lenny and I will return to see her tonight at 8:00 p.m.
"Accept my prayer as incense offered to you, and my upraised hands as an evening offering." Psalm 141:2
Saturday, December 25, 2010
Mom Update, December 25, 2010, Saturday
Last night, while I was in the waiting room waiting my turn to see mom, I didn’t feel good so Lenny drove me home. Surprise! Stomach virus!! YUCK! So I have been in bed since 8:20 p.m. Friday night. Brother! It is now mid-afternoon and I am feeling much better—thank the Lord, but I am still in my PJs in bed with our 2 puppies, Brutus and Toby, to keep me warm. Lenny went to be with the Granelli family today for the holiday, which as it turns out, is a blessing in disguise because I don’t have to worry about anything other than lying in bed and recuperating.
Enough of my tales of woe!! Hahaha!!! I called the hospital this morning to see how mom did throughout the night and they reported that she had a good night and was in stable condition. They said they have the results of the 2nd CAT Scan and that the doctor will call to read the results. Claudia, Dad and Anthony went to see mom this morning at 11:00. Mom has a urinary tract infection and the organism’s name is klebsiella. Her sputum has a 3+ white blood cell count which means that there is probably an infection but the type hasn’t been identified as of yet so name for it. Her white blood cell count is already coming down which is good. Her blood looks good. She is on vancamiacin and it appears that her infections are beginning to clear up. She was originally admitted for pneumothorax respiratory failure (a collapsed lung). She had the CAT Scan and they said the results are in but only the doctor or neurologist can tell us the results. Hard to meet up with them today because of the holiday. If we don’t meet up with them today, or hear from them, then we can call their service tomorrow and ask them to call us or else we will have results definitely on Monday. The nurses told us to wash our hands both when we arrive to see mom and again when we leave her, and that, if we touch her skin, we have to wear gloves (so we don’t spread the infection).
Anthony, Con and Dad went to see mom at 4:00. They saw the doctor who said that her CAT Scan is still the same as it was back in October (which is a good thing). No new bleeds. It appears that the urinary tract infection (as of the latest lab results) is cleared up except for some microscopic blood in the urine (which could be from the cysts on her kidneys). She opened her eyes for about a minute when they asked her to open her eyes---it didn't look like she saw them but she did tilt her head in their direction as they spoke to her. Her chest tube is working well and her lung is doing well. She yawned a few times and they said she looks alot better then yesterday---her whole expression looked better to them. Dad said that the doctor stressed again that the trauma mom went through was alot and took alot out of her physically so expect her to be very tired for a while longer. The doctor feels that mom is just sleeping alot right now (to heal) and nothing else (as per dad).
This evening, Claudia and Dad went back to see mom at 8:00. Last night, Claudia read mom "The Night Before Christmas" and also sang to mom as well. Claudia said mom had her eyes open quite a bit tonight. She coughed alot and was actually swallowing tonight which is good. Once, she even looked to the left as if to find Claudia. They talked and sang alot to her the whole time while playing music on her IPOD. Mom has a lump on her left arm that looked alot like what happens after having a shot. Claudia told the nurse to have the doctor check it out. Nothing to be worried about. Claudia felt that mom was much more connected and present tonight.
"Let us love one another, for love comes from God." 1 john 4:7
Enough of my tales of woe!! Hahaha!!! I called the hospital this morning to see how mom did throughout the night and they reported that she had a good night and was in stable condition. They said they have the results of the 2nd CAT Scan and that the doctor will call to read the results. Claudia, Dad and Anthony went to see mom this morning at 11:00. Mom has a urinary tract infection and the organism’s name is klebsiella. Her sputum has a 3+ white blood cell count which means that there is probably an infection but the type hasn’t been identified as of yet so name for it. Her white blood cell count is already coming down which is good. Her blood looks good. She is on vancamiacin and it appears that her infections are beginning to clear up. She was originally admitted for pneumothorax respiratory failure (a collapsed lung). She had the CAT Scan and they said the results are in but only the doctor or neurologist can tell us the results. Hard to meet up with them today because of the holiday. If we don’t meet up with them today, or hear from them, then we can call their service tomorrow and ask them to call us or else we will have results definitely on Monday. The nurses told us to wash our hands both when we arrive to see mom and again when we leave her, and that, if we touch her skin, we have to wear gloves (so we don’t spread the infection).
Anthony, Con and Dad went to see mom at 4:00. They saw the doctor who said that her CAT Scan is still the same as it was back in October (which is a good thing). No new bleeds. It appears that the urinary tract infection (as of the latest lab results) is cleared up except for some microscopic blood in the urine (which could be from the cysts on her kidneys). She opened her eyes for about a minute when they asked her to open her eyes---it didn't look like she saw them but she did tilt her head in their direction as they spoke to her. Her chest tube is working well and her lung is doing well. She yawned a few times and they said she looks alot better then yesterday---her whole expression looked better to them. Dad said that the doctor stressed again that the trauma mom went through was alot and took alot out of her physically so expect her to be very tired for a while longer. The doctor feels that mom is just sleeping alot right now (to heal) and nothing else (as per dad).
This evening, Claudia and Dad went back to see mom at 8:00. Last night, Claudia read mom "The Night Before Christmas" and also sang to mom as well. Claudia said mom had her eyes open quite a bit tonight. She coughed alot and was actually swallowing tonight which is good. Once, she even looked to the left as if to find Claudia. They talked and sang alot to her the whole time while playing music on her IPOD. Mom has a lump on her left arm that looked alot like what happens after having a shot. Claudia told the nurse to have the doctor check it out. Nothing to be worried about. Claudia felt that mom was much more connected and present tonight.
"Let us love one another, for love comes from God." 1 john 4:7
Friday, December 24, 2010
Mom Update, December 24, 2010, Friday Night
Dad and I visited with mom this morning at the 11:00 visiting time. Yesterday, I forgot to write that mom was drooling occasionally--which is something she doesn't do. I tend to think it was because she is so tired. On Wednesday, she had been biting or chewing on her tongue at one point, but she isn't doing this now. Mom was back on the vent at number 12 again since her hospital stay. The respiratory therapist at the facility told John and I that she'd be back on the "fast track" once she returned from the hospital to get her back on just the trach collar. Sister Suzanne came back too! When I first arrived, dad was there with mom all ready and it looked like he was praying over her and anointing her with oil on her forehead. The 3 of us chatted to and around mom. Mom was still asleep. She had just come back from a CAT Scan. We have no results of that yet. As we chatted, it appeared to me that mom very, very subtly was trying to mouth something several times...but very slightly. When we touched her feet or leg, she responded to the touch by jumping. Her facial expression changed a bit too at times. If you weren't looking carefully, you wouldn't see any of this. After Suzanne left, dad stood on one side of mom and I stood on the other and we were both stroking her shoulders and talking to her. Dad said, "Dee Dee, my girl, please open your eyes now and look at me" and mom did. It was hard to tell if she was able to see dad or not, but her head turned to dad's voice and her eyes were facing him. They didn't have a blank, "nobody's home" look, but they also seemed not to be able to focus as well.
At 4:00 p.m. our entire family gathered at the hospital to visit mom-2 by 2--Aunt Sophie came with us too. Mom was the same. Sleepy but did open her eyes for a few seconds when we asked her to. When Lenny and Jean were with mom, they asked her to wiggle her feet and she did it about 50% of the time.
When the afternoon visiting time ended, we all went across the street from the hospital to the diner. They have a private room there and we reserved it. Dad kept it together but he also kept beginning to cry on and off throughout the night. We all exchanged gifts there and then we went back to visit mom after dinner. Aunt Sophie went home after dinner with Jean, Ava and John.
I wrote something for each member of the family and had T shirts made for us that say, "Don't quit 5 minutes before the miracle happens." The waitress took a picture of us so I am enclosing it here.
Peace and Be Well,
Kathy
"For he shall give his angels charge over thee" Psalm 91:11
At 4:00 p.m. our entire family gathered at the hospital to visit mom-2 by 2--Aunt Sophie came with us too. Mom was the same. Sleepy but did open her eyes for a few seconds when we asked her to. When Lenny and Jean were with mom, they asked her to wiggle her feet and she did it about 50% of the time.
When the afternoon visiting time ended, we all went across the street from the hospital to the diner. They have a private room there and we reserved it. Dad kept it together but he also kept beginning to cry on and off throughout the night. We all exchanged gifts there and then we went back to visit mom after dinner. Aunt Sophie went home after dinner with Jean, Ava and John.
I wrote something for each member of the family and had T shirts made for us that say, "Don't quit 5 minutes before the miracle happens." The waitress took a picture of us so I am enclosing it here.
Peace and Be Well,
Kathy
"For he shall give his angels charge over thee" Psalm 91:11
Mom Update, December 24, 2010, Friday
Haven't seen mom yet. Can't go see her until 11:00. I will update you all again later. I just wanted to share this message with you as the day begins. I know that some of you will receive or have received this already in a card...but here it is again. Have a blessed day!
…as it is written:
"No eye has seen,
no ear has heard,
no mind has conceived
what God has prepared for those who love him" 1 Corinthians 2:9
Each and every day of the year, God beckons us to enter His Covenant of love. This Covenant is a blood covenant of love (think about it, that which constitutes the essence of life force is in the blood—oxygen, nutrients…). Historically, blood covenants were the most legally binding covenants of all covenants. They are an exchange between the two parties partaking in them, and serve as a symbol of permanent connection and commitment. A blood covenant means, “I give you my life in exchange for yours.” Such an exchange reflects the fact that everything about, and part of, one’s life becomes part of the other’s. This includes all rights, authority, power, and domains. When, and if, we enter into a covenant with the Lord, we are inheriting all that is His. We have the potential to walk in all that He is. We have the ability and the authority to overcome all that life throws at us. Once we are part of this Covenant with God, we become heirs to His Kingdom…to all that He has for us. And oh, we can’t even begin to imagine all that the Lord has in store for us. God prepares such wonders for each of us that we can’t even conceive of what these wonders are. Some of these wonders are wonders that we will see in the life hereafter. Others of these wonders are wonders that are here for us now, if only we take the time to look for them, and have the perspective to see them. Some people look at the condition of the world, or of their circumstances and ask, “Why do bad things happen in this world?” or “How could God allow this to happen to me?” Life just happens. Part of life involves bad things, and part of living is also dying. But God is with us always as is demonstrated through the birth of Jesus…to provide a way to sustain us despite the circumstances…to show us the way above it all.
Last June, our family’s world changed drastically when my mom suffered from a burst aneurysm and then a stroke. She was in a coma for 3 months following. We have been working diligently, against, and despite, the medical system, to rehabilitate her these last 3 months since. It has been quite the journey. It has been a time of tears, fears, pain and sorrow certainly; but it also has been a time of wonder as well. When I take the time to reflect and rest, to be still with God, it always amazes me to find how much the events of what happened to mom have been translated into daily wonders as we go along the journey of this new chapter in our book of life. When I can get the right perspective, and stop focusing on myself and focus on her, there I find the wonder. Our family has pulled together – young and old – one and all – in so many remarkable ways, to lean on each other and to help rehabilitate mom. Wonder. I have had the honor of ministering to and caring for mom, the remarkable woman who gave herself to me and all of our family for so long. Wonder. Then, there was the day back in mid June, where my aunt (mom’s best friend) and Claudia and our cousin and I were all gathered around mom (she was in the coma then) talking to her, combing her hair, filing her nails, washing her face, when a nurse walked in on this scene and said, “Oh, you all are ‘the girls,’ aren’t you?” Wonder. There was the day Claudia and I sat on either side of mom in the recreation room singing “oldies” while each one of us held one of her hands and “chair danced with her.” Wonder. There are the quiet, still moments as we sit by mom’s bedside and hold her hand in the early dawn or late in the evening, when the world, for that moment in time consists of just mom and one of us. Wonder. There was mom’s last birthday when we all gathered to her room at the same time, quite unexpectedly, and sang her favorite hymns and celebrated the day with her even though she was still in the coma. Wonder. There was also the time when we arrived one morning and read a new entry in her bedside book, “Love Notes for Dotty” and found the most poignant note from her night nurse who wrote about how she stands in mom’s room and reads all the signs and verses on the walls, and wrote, “I believe in miracles too Dotty.” Wonder. There was the first time she opened her eyes and spoke out loud to me last September when she woke from the coma…how beautiful her voice was. Wonder. There are the times when one of the choir members, a young girl, from mom’s church, came to stand at her bedside and sing her favorite hymns to her as she slept in the coma. Or the time the entire choir came to sing to her…portable keyboard and all. Wonder. There was the time when mom first gave us a kiss when we left and kissed her goodbye. Wonder. There was the time when I had the privilege of watching dad demonstrate courage and commitment and compassion even in the face of his own problems when he walked through a crowd of doctors and nurses at the facility to go and sit with a friend in the next room who had just lost her spouse that night as we all helplessly sat by and watched and prayed. Wonder. There are the times we rush in to care for and spend time with her right before or after work or school, and find her smiling at us now as we arrive. Wonder. There are the tender times when it’s just one of us with mom, hugging her or holding her close…loving her in her full presence and attention. Wonder. There are the times when I have the honor and privilege to be in the presence of my nieces and nephews and son as they lovingly, tenderly and carefully tend to their beloved “Nonny’s” needs…this is such a sacred and holy thing to witness. Wonder. There are the days when I arrive in mom’s room and find her girlfriends sitting in a circle around her chatting with her like nothing ever happened. Wonder. There is the change in the affect of so many of the staff members where mom is, from grouchy, cranky, rushed individuals to those who also refer to her as, “Nonny” now. Wonder. Then there was the day recently when one of the CNAs asked permission to give our name to another family whose loved one is now in the same condition mom was in just a few short months ago so that we could help them recover their loved one too. Wonder. There was the day mom first lifted her legs after 5 months of stillness. Wonder. Or the day I stood beside her as she breathed her first breath without the assistance of the vent (I couldn’t help but think about the fact that she was there when I drew in my first breath and now years later, I am there to witness the same in her). Wonder. To be able to know how to sit still and just “be” with a loved one is a wonder. Every day we are able to watch as family, friends and loved ones gather around us all to comfort us, support us, visit with mom from all over the country. Wonder. We are, and have been, so blessed, even in this time of need…and perhaps, this is the biggest wonder.
What God has in store for us in the realm of wonder is not always what we think it will or should be…but it constitutes a wonder-filled event just the same. We never know each day as we live through it, how our lives may bear witness to wonders of the love of the Lord. I have learned that sometimes all it takes is a shift of the lens through which we view the current circumstances in order to find the wonder. It is during a time of wonder that Emanuel came…and God was with us at last.
May your holidays be blessed with family, friends, loved ones…and yes, with the wonders of the Lord. For eye has not seen nor ear has heard or mind conceived what God has prepared for those who love Him. Rest assured in the knowledge of this fact this season and let God’s wonders unfold in your life each day. Peace and Be Well ~ Kathy and Lenny (mom’s blog = http://dottysupdates-kgranelli.blogspot.com
…as it is written:
"No eye has seen,
no ear has heard,
no mind has conceived
what God has prepared for those who love him" 1 Corinthians 2:9
Each and every day of the year, God beckons us to enter His Covenant of love. This Covenant is a blood covenant of love (think about it, that which constitutes the essence of life force is in the blood—oxygen, nutrients…). Historically, blood covenants were the most legally binding covenants of all covenants. They are an exchange between the two parties partaking in them, and serve as a symbol of permanent connection and commitment. A blood covenant means, “I give you my life in exchange for yours.” Such an exchange reflects the fact that everything about, and part of, one’s life becomes part of the other’s. This includes all rights, authority, power, and domains. When, and if, we enter into a covenant with the Lord, we are inheriting all that is His. We have the potential to walk in all that He is. We have the ability and the authority to overcome all that life throws at us. Once we are part of this Covenant with God, we become heirs to His Kingdom…to all that He has for us. And oh, we can’t even begin to imagine all that the Lord has in store for us. God prepares such wonders for each of us that we can’t even conceive of what these wonders are. Some of these wonders are wonders that we will see in the life hereafter. Others of these wonders are wonders that are here for us now, if only we take the time to look for them, and have the perspective to see them. Some people look at the condition of the world, or of their circumstances and ask, “Why do bad things happen in this world?” or “How could God allow this to happen to me?” Life just happens. Part of life involves bad things, and part of living is also dying. But God is with us always as is demonstrated through the birth of Jesus…to provide a way to sustain us despite the circumstances…to show us the way above it all.
Last June, our family’s world changed drastically when my mom suffered from a burst aneurysm and then a stroke. She was in a coma for 3 months following. We have been working diligently, against, and despite, the medical system, to rehabilitate her these last 3 months since. It has been quite the journey. It has been a time of tears, fears, pain and sorrow certainly; but it also has been a time of wonder as well. When I take the time to reflect and rest, to be still with God, it always amazes me to find how much the events of what happened to mom have been translated into daily wonders as we go along the journey of this new chapter in our book of life. When I can get the right perspective, and stop focusing on myself and focus on her, there I find the wonder. Our family has pulled together – young and old – one and all – in so many remarkable ways, to lean on each other and to help rehabilitate mom. Wonder. I have had the honor of ministering to and caring for mom, the remarkable woman who gave herself to me and all of our family for so long. Wonder. Then, there was the day back in mid June, where my aunt (mom’s best friend) and Claudia and our cousin and I were all gathered around mom (she was in the coma then) talking to her, combing her hair, filing her nails, washing her face, when a nurse walked in on this scene and said, “Oh, you all are ‘the girls,’ aren’t you?” Wonder. There was the day Claudia and I sat on either side of mom in the recreation room singing “oldies” while each one of us held one of her hands and “chair danced with her.” Wonder. There are the quiet, still moments as we sit by mom’s bedside and hold her hand in the early dawn or late in the evening, when the world, for that moment in time consists of just mom and one of us. Wonder. There was mom’s last birthday when we all gathered to her room at the same time, quite unexpectedly, and sang her favorite hymns and celebrated the day with her even though she was still in the coma. Wonder. There was also the time when we arrived one morning and read a new entry in her bedside book, “Love Notes for Dotty” and found the most poignant note from her night nurse who wrote about how she stands in mom’s room and reads all the signs and verses on the walls, and wrote, “I believe in miracles too Dotty.” Wonder. There was the first time she opened her eyes and spoke out loud to me last September when she woke from the coma…how beautiful her voice was. Wonder. There are the times when one of the choir members, a young girl, from mom’s church, came to stand at her bedside and sing her favorite hymns to her as she slept in the coma. Or the time the entire choir came to sing to her…portable keyboard and all. Wonder. There was the time when mom first gave us a kiss when we left and kissed her goodbye. Wonder. There was the time when I had the privilege of watching dad demonstrate courage and commitment and compassion even in the face of his own problems when he walked through a crowd of doctors and nurses at the facility to go and sit with a friend in the next room who had just lost her spouse that night as we all helplessly sat by and watched and prayed. Wonder. There are the times we rush in to care for and spend time with her right before or after work or school, and find her smiling at us now as we arrive. Wonder. There are the tender times when it’s just one of us with mom, hugging her or holding her close…loving her in her full presence and attention. Wonder. There are the times when I have the honor and privilege to be in the presence of my nieces and nephews and son as they lovingly, tenderly and carefully tend to their beloved “Nonny’s” needs…this is such a sacred and holy thing to witness. Wonder. There are the days when I arrive in mom’s room and find her girlfriends sitting in a circle around her chatting with her like nothing ever happened. Wonder. There is the change in the affect of so many of the staff members where mom is, from grouchy, cranky, rushed individuals to those who also refer to her as, “Nonny” now. Wonder. Then there was the day recently when one of the CNAs asked permission to give our name to another family whose loved one is now in the same condition mom was in just a few short months ago so that we could help them recover their loved one too. Wonder. There was the day mom first lifted her legs after 5 months of stillness. Wonder. Or the day I stood beside her as she breathed her first breath without the assistance of the vent (I couldn’t help but think about the fact that she was there when I drew in my first breath and now years later, I am there to witness the same in her). Wonder. To be able to know how to sit still and just “be” with a loved one is a wonder. Every day we are able to watch as family, friends and loved ones gather around us all to comfort us, support us, visit with mom from all over the country. Wonder. We are, and have been, so blessed, even in this time of need…and perhaps, this is the biggest wonder.
What God has in store for us in the realm of wonder is not always what we think it will or should be…but it constitutes a wonder-filled event just the same. We never know each day as we live through it, how our lives may bear witness to wonders of the love of the Lord. I have learned that sometimes all it takes is a shift of the lens through which we view the current circumstances in order to find the wonder. It is during a time of wonder that Emanuel came…and God was with us at last.
May your holidays be blessed with family, friends, loved ones…and yes, with the wonders of the Lord. For eye has not seen nor ear has heard or mind conceived what God has prepared for those who love Him. Rest assured in the knowledge of this fact this season and let God’s wonders unfold in your life each day. Peace and Be Well ~ Kathy and Lenny (mom’s blog = http://dottysupdates-kgranelli.blogspot.com
Thursday, December 23, 2010
Mom Update, December 23, 2010, Thursday
Unfortunately, there isn't much to report today. Visiting hours in the SICU (Surgical Intensive Care Unit) are only 11-11:45 a.m., 4-4:45 p.m. and 8-8:45 p.m. that's it. A very small window of time to spend with mom. As you all know by now, we spend the better part of a day with mom...this is really difficult for us all. Dad pretty much stands by her bed and ends up crying after his gentle plea to mom, "Dee Dee, please wake up. Open your eyes for me my girl." It is heartbreaking to watch. We asked about extending visiting hours but to no avail. Sister Suzanne came to see mom around 3:00 p.m. and was also told she couldn't visit then and had to leave and come back if she wanted to visit. But, she's getting a lot of medical attention, which is good. We found out today that mom is on Profonix (for indigestion), Atrovent and Albuterol for breathing, heparin (for blood clotting, God help us...here we go again with side effects...), and Labetalol for her blood pressure which has been on the high side again since all this happened. Her top number on the blood pressure number has been as high as 160 and they want that down. They use the blood pressure cuff to read it not the monitor. There is supposedly no insulin they are giving her....God help us that they keep her off that poison!!! Mom had been off everything, including her blood pressure medicine, since we fought tooth and nail in August. As the hospital doctor stated though, she needs to be on all of this medicine due to her acute condition on arrival. Once her heart and lungs are more stable, all the medicine can be stopped and she can be released. All the medication she is on now in the hospital is necessary for adequate heart and lung functioning. There was talk of dilantin yesterday and I fought that one!!!! Praise the Lord!!! She doesn't need that!!! She will be released whenever she is ready.
Anthony, Dad, Claudia and I saw mom this morning and she was the same...asleep and unconscious. The pulminologist said that mom's lungs are fine and her lung is expanded and looks good and the tube will be removed soon but not yet. Claudia told the day nurse about mom's sometime belly breathing and the need to be suctioned and the nurse said he suctioned her periodically and routinely so don't worry. The pulminologist also said it is all a matter of how much time she was out of oxygen during the event and time will tell her mental condition. Claudia and Anthony said that they touched mom's feet to see if mom's feet were floating off the bed (bed sore alert again---there is no sign but we are vigilant again) and she pulled away which is good. When the nurse suctioned her mouth, she opened her mouth on command. She also reacted to the suctioning. The nurse said that she responds to painful stimulation but when he "bothers" her for a reaction, not much. The neurologist came this afternoon when Dad, Claudia and Aunt Sophie were there (yes, Aunt Sophie returns!!). The neurologist said that mom's eyes looked good, her reactions were good, but that she was actually sleeping. There is another CAT Scan scheduled tomorrow because it takes time for anything to show up on a CAT Scan and even if it comes out perfectly, doesn't mean that there is no brain damage. The neurologist also said that she could have had a 60% loss of oxygen (hypoxia) and still be fine, but since we really don't know exactly how long she was without oxygen, or if she was, time will tell. Claudia sang Christmas carols to mom and mom moved her feet to the music as she did... Anthony, Con, Ava, Terry, Dad and I saw mom this evening. She slept. No response. So much of this is reminiscent of her time in the hospital in June...but we won't give up hope or working with mom. Just take one day and moment at a time.
"...let us run with perseverance the race marked out for us." Hebrews 12:1
Anthony, Dad, Claudia and I saw mom this morning and she was the same...asleep and unconscious. The pulminologist said that mom's lungs are fine and her lung is expanded and looks good and the tube will be removed soon but not yet. Claudia told the day nurse about mom's sometime belly breathing and the need to be suctioned and the nurse said he suctioned her periodically and routinely so don't worry. The pulminologist also said it is all a matter of how much time she was out of oxygen during the event and time will tell her mental condition. Claudia and Anthony said that they touched mom's feet to see if mom's feet were floating off the bed (bed sore alert again---there is no sign but we are vigilant again) and she pulled away which is good. When the nurse suctioned her mouth, she opened her mouth on command. She also reacted to the suctioning. The nurse said that she responds to painful stimulation but when he "bothers" her for a reaction, not much. The neurologist came this afternoon when Dad, Claudia and Aunt Sophie were there (yes, Aunt Sophie returns!!). The neurologist said that mom's eyes looked good, her reactions were good, but that she was actually sleeping. There is another CAT Scan scheduled tomorrow because it takes time for anything to show up on a CAT Scan and even if it comes out perfectly, doesn't mean that there is no brain damage. The neurologist also said that she could have had a 60% loss of oxygen (hypoxia) and still be fine, but since we really don't know exactly how long she was without oxygen, or if she was, time will tell. Claudia sang Christmas carols to mom and mom moved her feet to the music as she did... Anthony, Con, Ava, Terry, Dad and I saw mom this evening. She slept. No response. So much of this is reminiscent of her time in the hospital in June...but we won't give up hope or working with mom. Just take one day and moment at a time.
"...let us run with perseverance the race marked out for us." Hebrews 12:1
Wednesday, December 22, 2010
Mom Update, December 22, 2010, Wednesday
It's Kathy. Just got back from the hospital. Mom is stable but still unconscious.
I woke very late this morning (7:45 a.m.) because I was up during the night coughing. The phone rang as soon as I sat up and it was the facility calling to say that mom had an "incident" and pulled out her trach and she was being sent to the hospital as a precaution. Jean (Claudia's son) was on his way to start the day with mom this morning. He was very excited to be starting "Nonny's" day with her and had all kinds of activities planned to do with her. He arrived to a chaotic mess. They were already working on mom when Jean got there. Some nurses and CNAs were in the hallway gathered by mom's room and when they saw Jean they said, "Oh man, your mom and aunt are gonna be really mad when they hear about this!" At that point, one of the nurses we love, put his arms around Jean, hugged him, and said, "Of course, they will be mad. They have every right to be mad" and he led Jean away to tell him what happened. I met Jean at the facility after mom was taken in the ambulance and we drove to the hospital together. By this time, the report was that mom's emergency alarm had suddenly sounded and they responded and found her trach out and they had to put it back in and they had to "bag" her---this means that they had to do CPR procedures which require a mask attached to a balloon bag that emits air when pumped/squeezed. They needed to do this in order to prevent cardiac arrest (she didn't go into cardiac arrest, thank God). They said that her oxygen levels dropped down to 40 (not good) but that supposedly, she never stopped breathing. I asked why no one paid attention to mom's alarm alert until it was an emergency---they all had just changed shifts and were doing rounds when this happened. In my experience since this all happened to mom, the alarm alert doesn't just shoot from nothing to emergency level...if mom hiccups the alarm sounds. Granted there are different levels and sounds to each alarm depending on the level of the problem...but my point is that no one responded to the low level alarms which would have prevented all this from happening. I asked for a list of names---who was on duty during that time in every department. The first nurse hung up on me because I was speaking really loudly because I was upset. The second nurse was the one we love and he apologized profusely (though it is never his fault).
Mom was brought to the emergency room of the hospital near my house. Coincidently, but most likely Divinely, mom's pulminologist and neurologist were both at the hospital doing rounds---thank God!! They immediately responded to mom. The pulminologist determined that during the "bagging" procedure at the facility, mom's lung collapsed/punctured/popped (too much air was pushed into her lungs and her left lung was affected). They put a tube into mom's lung to expand it and blow air in---as of this evening, her lung was doing what it is supposed to do and responding well. Anthony went to tell dad and to pick him up---he was at church. They arrived at the hospital after Jean and I. John, Claudia, Ava, and Con and Rie and Phil all came to be at the hospital too.
Mom was stable when she entered the hospital and remained stable. At the hospital, they explained that what had initially happened was that mom had a blockage in her upper airway. The blockage was congealed phlegm that was harder for mom to cough up. When it is hard to cough up, it blocks the airway and also causes all other secretions to pool in the throat and lungs which gives the person the sensation of feeling like he/she is drowning. Once mom felt like this, she panicked and pulled on the trach and it was pulled out. Looking back, I now realize that when I thought mom was having anxiety attacks, this is what was happening. If you remember, weeks ago, one of the night nurses came in response to my calling for help with mom because she appeared to be "belly/abdominal breathing and spasming and her arms were clammy. He said she probably needed suctioning and after he did that, she was fine. He is the person who explained the whole drowning thing to me. Claudia recently wrote about a blockage and that the same belly breathing thing and a respiratory therapist came and suctioned mom and put some saline solution into the trach to dissolve the blockage. Mom was then fine.
Mom remained in the emergency room all day and they were going to leave her there, but a family member knew someone who arranged for mom to get a bed. Mom is now in the SICU...Surgery Intensive Care Unit with 24 hour monitoring...similar to when she was at North Shore. When dad and I saw mom, I prayed over her immediately. She began to respond as per the neurologist shortly thereafter. She also began to throw up for a while in the emergency room too. They still don't know why. Dad said he thought it could be in response to her collapsed lung finally opening. Though she remained unconscious all day and night, John asked her to open her eyes twice and she did it slightly. Dad asked her the same thing and she opened them all the way (but all 3 times it was only briefly and then she quickly closed them). Con asked her to smile and she did---strange smile but a smile for certain. One of the nurses asked her to open her mouth and she did that too.
The problem is that we don't know for sure if there will be any additional brain damage at this point. Her CAT Scan was normal with no difference from October...this is good. Her neurologist said, based on the information he was given (never stopped breathing, facility responded and took care of everything in 1-2 minutes...), he has every hope at this point that mom will come back from this and be just as she was before this happened. But, he isn't sure. He said it is typical for someone who has gone through this to be unresponsive and lethargic and unconscious for up to 4 days; but we will know more after that as far as where she is mentally. He said that along this road, it is typical to take 2 steps forward and one step back. He said it is a set back but this happens but she looks stable and she looks better and better each time he sees her. He told us several times that he has every hope she will do well and that he saw slight improvement already and that we need to continue to rehabilitate her as we have been and go on from here. When dad and Claudia saw mom in the SICU tonight, she responded in an agitated way to Claudia wiping mom's nose and she also yawned and seemed to stretch at one point as well.
Mom will be in the hospital for 2-7 days. John and I left at 2 to go to the facility to get mom's hearing aids, glasses, and night time "loveys." While there, we spoke to the head of respiratory and updated him and thanked him for his service to mom. I told him to let every respiratory person who works with mom know that between 7 p.m. and 8 a.m. they need to check on her for blockages and suction her and maybe even do a saline treatment especially now that mom goes to physical therapy and the movement is unblocking previously blocked areas of thick mucus. We also talked to mom's daytime CNA (who we love) and she said she had seen mom about 30 minutes before this happened (she doesn't know the signs to look for with the belly breathing ....). The CNA said "She is going to get better because we call her the Miracle Lady around here" and then she hugged me. We also spoke to the nurse we love too and the recreation therapist who said she was so happy we were going to have the recreation room for Christmas Eve and Christmas Day...no more. I also spoke on the phone to the building administrator to ask if mom's bed would be held... oh yes, she might lose her bed and room and have to move...again...he said that (contrary to what he told the men when Claudia and I were in Toronto) she has a bed hold for 14 days every 12 months (not per episode) as per NYS. I expressed my concerns at the lack of response to the early alarms and asked him to tell the staff that they need to take their jobs very seriously and respond when an alarm goes off. I told him it was unfortunate and that "it is what it is" regarding mom, but that this didn't need to happen at all---it could have been prevented. He was patronizing but I just said that I needed to speak the truth and put it out there to him and what he does with the truth from here is his business.
While the pulminologist took background data from me and Anthony about mom, he asked if she was predominantly a house wife her whole life and I said yes she was. He said "Well of course she was, she had to be in order to raise such a loving family. You know, you won't believe this but I swear to you, on my way to work this morning, in my car on the LIE, I was thinking about your family. And I said, there has to be a higher power, a God, because of the love I see in your family and the care that you give to your mom. I swear to you. I prayed to that God and asked Him, please, when I get old some day, please send family to take care of me the way that your family takes care of your mom. I watch you all and think, yes, there is a God."
What an awesome honor. Please continue to pray for us all. I am still sick and so is Lenny. Dad is a total wreck. He is very fragile right now. Please pray for us all. We can't thank you enough.
"Therefore once more I will astound these people with wonder upon wonder..." Isaiah 29:14
I woke very late this morning (7:45 a.m.) because I was up during the night coughing. The phone rang as soon as I sat up and it was the facility calling to say that mom had an "incident" and pulled out her trach and she was being sent to the hospital as a precaution. Jean (Claudia's son) was on his way to start the day with mom this morning. He was very excited to be starting "Nonny's" day with her and had all kinds of activities planned to do with her. He arrived to a chaotic mess. They were already working on mom when Jean got there. Some nurses and CNAs were in the hallway gathered by mom's room and when they saw Jean they said, "Oh man, your mom and aunt are gonna be really mad when they hear about this!" At that point, one of the nurses we love, put his arms around Jean, hugged him, and said, "Of course, they will be mad. They have every right to be mad" and he led Jean away to tell him what happened. I met Jean at the facility after mom was taken in the ambulance and we drove to the hospital together. By this time, the report was that mom's emergency alarm had suddenly sounded and they responded and found her trach out and they had to put it back in and they had to "bag" her---this means that they had to do CPR procedures which require a mask attached to a balloon bag that emits air when pumped/squeezed. They needed to do this in order to prevent cardiac arrest (she didn't go into cardiac arrest, thank God). They said that her oxygen levels dropped down to 40 (not good) but that supposedly, she never stopped breathing. I asked why no one paid attention to mom's alarm alert until it was an emergency---they all had just changed shifts and were doing rounds when this happened. In my experience since this all happened to mom, the alarm alert doesn't just shoot from nothing to emergency level...if mom hiccups the alarm sounds. Granted there are different levels and sounds to each alarm depending on the level of the problem...but my point is that no one responded to the low level alarms which would have prevented all this from happening. I asked for a list of names---who was on duty during that time in every department. The first nurse hung up on me because I was speaking really loudly because I was upset. The second nurse was the one we love and he apologized profusely (though it is never his fault).
Mom was brought to the emergency room of the hospital near my house. Coincidently, but most likely Divinely, mom's pulminologist and neurologist were both at the hospital doing rounds---thank God!! They immediately responded to mom. The pulminologist determined that during the "bagging" procedure at the facility, mom's lung collapsed/punctured/popped (too much air was pushed into her lungs and her left lung was affected). They put a tube into mom's lung to expand it and blow air in---as of this evening, her lung was doing what it is supposed to do and responding well. Anthony went to tell dad and to pick him up---he was at church. They arrived at the hospital after Jean and I. John, Claudia, Ava, and Con and Rie and Phil all came to be at the hospital too.
Mom was stable when she entered the hospital and remained stable. At the hospital, they explained that what had initially happened was that mom had a blockage in her upper airway. The blockage was congealed phlegm that was harder for mom to cough up. When it is hard to cough up, it blocks the airway and also causes all other secretions to pool in the throat and lungs which gives the person the sensation of feeling like he/she is drowning. Once mom felt like this, she panicked and pulled on the trach and it was pulled out. Looking back, I now realize that when I thought mom was having anxiety attacks, this is what was happening. If you remember, weeks ago, one of the night nurses came in response to my calling for help with mom because she appeared to be "belly/abdominal breathing and spasming and her arms were clammy. He said she probably needed suctioning and after he did that, she was fine. He is the person who explained the whole drowning thing to me. Claudia recently wrote about a blockage and that the same belly breathing thing and a respiratory therapist came and suctioned mom and put some saline solution into the trach to dissolve the blockage. Mom was then fine.
Mom remained in the emergency room all day and they were going to leave her there, but a family member knew someone who arranged for mom to get a bed. Mom is now in the SICU...Surgery Intensive Care Unit with 24 hour monitoring...similar to when she was at North Shore. When dad and I saw mom, I prayed over her immediately. She began to respond as per the neurologist shortly thereafter. She also began to throw up for a while in the emergency room too. They still don't know why. Dad said he thought it could be in response to her collapsed lung finally opening. Though she remained unconscious all day and night, John asked her to open her eyes twice and she did it slightly. Dad asked her the same thing and she opened them all the way (but all 3 times it was only briefly and then she quickly closed them). Con asked her to smile and she did---strange smile but a smile for certain. One of the nurses asked her to open her mouth and she did that too.
The problem is that we don't know for sure if there will be any additional brain damage at this point. Her CAT Scan was normal with no difference from October...this is good. Her neurologist said, based on the information he was given (never stopped breathing, facility responded and took care of everything in 1-2 minutes...), he has every hope at this point that mom will come back from this and be just as she was before this happened. But, he isn't sure. He said it is typical for someone who has gone through this to be unresponsive and lethargic and unconscious for up to 4 days; but we will know more after that as far as where she is mentally. He said that along this road, it is typical to take 2 steps forward and one step back. He said it is a set back but this happens but she looks stable and she looks better and better each time he sees her. He told us several times that he has every hope she will do well and that he saw slight improvement already and that we need to continue to rehabilitate her as we have been and go on from here. When dad and Claudia saw mom in the SICU tonight, she responded in an agitated way to Claudia wiping mom's nose and she also yawned and seemed to stretch at one point as well.
Mom will be in the hospital for 2-7 days. John and I left at 2 to go to the facility to get mom's hearing aids, glasses, and night time "loveys." While there, we spoke to the head of respiratory and updated him and thanked him for his service to mom. I told him to let every respiratory person who works with mom know that between 7 p.m. and 8 a.m. they need to check on her for blockages and suction her and maybe even do a saline treatment especially now that mom goes to physical therapy and the movement is unblocking previously blocked areas of thick mucus. We also talked to mom's daytime CNA (who we love) and she said she had seen mom about 30 minutes before this happened (she doesn't know the signs to look for with the belly breathing ....). The CNA said "She is going to get better because we call her the Miracle Lady around here" and then she hugged me. We also spoke to the nurse we love too and the recreation therapist who said she was so happy we were going to have the recreation room for Christmas Eve and Christmas Day...no more. I also spoke on the phone to the building administrator to ask if mom's bed would be held... oh yes, she might lose her bed and room and have to move...again...he said that (contrary to what he told the men when Claudia and I were in Toronto) she has a bed hold for 14 days every 12 months (not per episode) as per NYS. I expressed my concerns at the lack of response to the early alarms and asked him to tell the staff that they need to take their jobs very seriously and respond when an alarm goes off. I told him it was unfortunate and that "it is what it is" regarding mom, but that this didn't need to happen at all---it could have been prevented. He was patronizing but I just said that I needed to speak the truth and put it out there to him and what he does with the truth from here is his business.
While the pulminologist took background data from me and Anthony about mom, he asked if she was predominantly a house wife her whole life and I said yes she was. He said "Well of course she was, she had to be in order to raise such a loving family. You know, you won't believe this but I swear to you, on my way to work this morning, in my car on the LIE, I was thinking about your family. And I said, there has to be a higher power, a God, because of the love I see in your family and the care that you give to your mom. I swear to you. I prayed to that God and asked Him, please, when I get old some day, please send family to take care of me the way that your family takes care of your mom. I watch you all and think, yes, there is a God."
What an awesome honor. Please continue to pray for us all. I am still sick and so is Lenny. Dad is a total wreck. He is very fragile right now. Please pray for us all. We can't thank you enough.
"Therefore once more I will astound these people with wonder upon wonder..." Isaiah 29:14
Mom's Update, December 21, 2010, Tuesday
Hi everyone,
Kathy is still sick and now Lenny is worse than Kathy! Anthony is also sick but getting better. I started the day with mom and set her up for the day. I did PT with her (range of motion) and put in her hearing aids. All was well this morning except for the fact that the C-pap was on! Ugh! Two steps forward and one step back! I spoke with the respiratory therapist and she said that her CO2 levels were low and she had labored breathing. She assured me that mom would be off the machine in the morning. I set mom up with the large magna-doodle, a sewing card and a toy that she uses her fingers to push a trigger and spin a wheel. When the wheel spins it makes sparks (light). It is a toy from when I was a kid. She has to think about how to place her fingers and then use her pointer and middle finger in opposition to her thumb. When dad arrived mom was playing with the toy. Dad said she was really concentrating. I aways leave the TV on when I leave in the morning also. Ava and I came back in the early evening and sat with dad and mom. Mom was sleeping. I washed her eyes, which were covered in gunk. This woke her up and then she listened to Ava talk. Dad knocked something off the window ledge and mom said, "What was that?" Dad left for the night and Ava and I had mom do a puzzle. She needed a lot of assistance because she wanted to just play with the pieces and not use the puzzle for how it was made. I am trying not to let her do a lot of off task behavior because with frontal lobe injury, there is a loss of attention span and executive function (the planning of how to learn). I don't want to her to get into the habit of not completing a task. It isn't the task that is so important (like putting together a puzzle) but the fact that she can do the task from start to finish and not be distracted. When she was done I had her take out each piece and put them in the zip lock bag. Next we played the "Sounds Around the House" game with the photos from her house. She just needed to be told to point to the correct picture rather than grab the picture. Pointing in response to a request will be helpful in the future when we have to ask her questions and have her respond with a point. I know she gets frustrated and looks at me like, "What is the big deal if I point" but there is a method to my madness. After the game she fell asleep. You can tell when she is taking a cat nap and when she is in a deep sleep, and she was in a deep sleep. I waited a little while and tried to wake her, but she was out cold. Ava and I stayed for a while and then started to get her ready for the night. I shut the lights, took out her hearing aids, took off her glasses and gave her the night time "lovies" (Soft blanket animals). She is always holding the soft "lovies" when I get there in the morning.
Just an aside, we reserved the recreation room for Christmas Eve. Our family will celebrate Christmas Eve together as usual. Dad plans on spending the night with mom on Christmas Eve into Christmas. He doesn't want to wake up CHristmas morning without her.
Please continue to pray for my family to get healthy.
Peace, Love and Joy this holiday season to all!
~Claud
Kathy is still sick and now Lenny is worse than Kathy! Anthony is also sick but getting better. I started the day with mom and set her up for the day. I did PT with her (range of motion) and put in her hearing aids. All was well this morning except for the fact that the C-pap was on! Ugh! Two steps forward and one step back! I spoke with the respiratory therapist and she said that her CO2 levels were low and she had labored breathing. She assured me that mom would be off the machine in the morning. I set mom up with the large magna-doodle, a sewing card and a toy that she uses her fingers to push a trigger and spin a wheel. When the wheel spins it makes sparks (light). It is a toy from when I was a kid. She has to think about how to place her fingers and then use her pointer and middle finger in opposition to her thumb. When dad arrived mom was playing with the toy. Dad said she was really concentrating. I aways leave the TV on when I leave in the morning also. Ava and I came back in the early evening and sat with dad and mom. Mom was sleeping. I washed her eyes, which were covered in gunk. This woke her up and then she listened to Ava talk. Dad knocked something off the window ledge and mom said, "What was that?" Dad left for the night and Ava and I had mom do a puzzle. She needed a lot of assistance because she wanted to just play with the pieces and not use the puzzle for how it was made. I am trying not to let her do a lot of off task behavior because with frontal lobe injury, there is a loss of attention span and executive function (the planning of how to learn). I don't want to her to get into the habit of not completing a task. It isn't the task that is so important (like putting together a puzzle) but the fact that she can do the task from start to finish and not be distracted. When she was done I had her take out each piece and put them in the zip lock bag. Next we played the "Sounds Around the House" game with the photos from her house. She just needed to be told to point to the correct picture rather than grab the picture. Pointing in response to a request will be helpful in the future when we have to ask her questions and have her respond with a point. I know she gets frustrated and looks at me like, "What is the big deal if I point" but there is a method to my madness. After the game she fell asleep. You can tell when she is taking a cat nap and when she is in a deep sleep, and she was in a deep sleep. I waited a little while and tried to wake her, but she was out cold. Ava and I stayed for a while and then started to get her ready for the night. I shut the lights, took out her hearing aids, took off her glasses and gave her the night time "lovies" (Soft blanket animals). She is always holding the soft "lovies" when I get there in the morning.
Just an aside, we reserved the recreation room for Christmas Eve. Our family will celebrate Christmas Eve together as usual. Dad plans on spending the night with mom on Christmas Eve into Christmas. He doesn't want to wake up CHristmas morning without her.
Please continue to pray for my family to get healthy.
Peace, Love and Joy this holiday season to all!
~Claud
Tuesday, December 21, 2010
Mom Update, December 20, 2010, Monday
Hi everyone,
I started the day with mom. She was in a good mood and even helped me do PT. I stretched her out and put in her hearing aids and cleaned her glasses. I also set up the lap tray with some things for her to do. I gave her the magna-doodle and a sewing card. I also gave her the squeezy cow that has the eyes that pop out. I left the TV on and then left mom. I had a respiratory therapist come in to suction mom and she didn't like the color of the phlegm. She said it was too dark. I also spoke with the head of therapy about how mom was put in the wheel chair yesterday. They had her in the chair with no shoes on and with her legs all the way up. I asked the nurse to come in and fix her and he said, "How do you want her?" I asked him if it was in her care plan how she should be placed in the chair and he said no. He showed me the care plan. I spoke with the head of therapy today and he said that they should know how to place her. He also said that I should fill out a concern sheet to let the facility know what happened. THis way he will get a copy and he can talk to the nursing supervisor, so with all of this going on this morning I could do a lot with mom. Anthony is sick now (another one bites the dust!). It sounds like he has what John had last week (head-ache, etc.). Dad came later in the day and stayed to put mom to bed. He said that she was in a good mood until he brought her Christmas cards to look at and then she became depressed. She was reading them and became sad. He said she spoke a little today but he couldn't remember what she said. A woman came into the room with a keyboard and sang for mom. Dad said she liked it. Dad said that they monitored the phlegm all day and that the color changed and they aren't concerned any more.
Please pray for our family to be...wait, as I am writing this, I am thinking of the prayer my dad use to say at dinner: Keep us happy, healthy, and holy!
Please pray for our family to be "Happy, Healthy, and Holy" this holiday season!
Peace and be well,
~Claud
I started the day with mom. She was in a good mood and even helped me do PT. I stretched her out and put in her hearing aids and cleaned her glasses. I also set up the lap tray with some things for her to do. I gave her the magna-doodle and a sewing card. I also gave her the squeezy cow that has the eyes that pop out. I left the TV on and then left mom. I had a respiratory therapist come in to suction mom and she didn't like the color of the phlegm. She said it was too dark. I also spoke with the head of therapy about how mom was put in the wheel chair yesterday. They had her in the chair with no shoes on and with her legs all the way up. I asked the nurse to come in and fix her and he said, "How do you want her?" I asked him if it was in her care plan how she should be placed in the chair and he said no. He showed me the care plan. I spoke with the head of therapy today and he said that they should know how to place her. He also said that I should fill out a concern sheet to let the facility know what happened. THis way he will get a copy and he can talk to the nursing supervisor, so with all of this going on this morning I could do a lot with mom. Anthony is sick now (another one bites the dust!). It sounds like he has what John had last week (head-ache, etc.). Dad came later in the day and stayed to put mom to bed. He said that she was in a good mood until he brought her Christmas cards to look at and then she became depressed. She was reading them and became sad. He said she spoke a little today but he couldn't remember what she said. A woman came into the room with a keyboard and sang for mom. Dad said she liked it. Dad said that they monitored the phlegm all day and that the color changed and they aren't concerned any more.
Please pray for our family to be...wait, as I am writing this, I am thinking of the prayer my dad use to say at dinner: Keep us happy, healthy, and holy!
Please pray for our family to be "Happy, Healthy, and Holy" this holiday season!
Peace and be well,
~Claud
Mom Update, December 19, 2010, Sunday
Hi everyone,
Today started with Rie, Phil, Pat, Michael, and Gina all visiting with mom. Pat brought mom a bouquet of flowers. Mom said they were beautiful. Jean showed up and when mom saw him she said, "Oh my God!" and smiled ear to ear! Con, Anthony, Anthony Michael, Samantha and Ava also came. I brought some Christmas music with guitar chords and Phil played the guitar and everyone sang. Mom smiled. Dad then came and we all sang and made mom laugh. Phil, Rie and Pat left and the rest of us watched miracle on 34th street. Mom laughed at certain parts of the movie. I left and Terry came to visit. They continued to watch Christmas movies. John and I came back later in the evening to put mom to bed. Dad was there and he told us that mom was trying to take the pulse-ox off her finger. She actually asked dad, "Take this off." Dad said no it has to stay on and mom said, "Stop it, stop it." Dad tried to explain why it had to be on and mom said, "I'm not talking to you." Dad was smiling while he told the story, but I worry about him. When dad left he said, "Dotty, I love you." mom didn't say anything so he said, "Dee, do you love me?" and she said, "Always." It was so great to here her say that. Dad needed that. Lately, mom has been pointing to communicate. THis is a first. She hasn't really requested anything. She will point to a toy (she did this to Anthony today) or to the pen. Before dad left I played the sounds around the house game with mom and showed her two pictures for each sound. The pictures are photos of her house hold items. Mom pointed to the correct pictures. I asked her if she liked the game and she shook her head yes. Dad left and John and I watched the Mary Tyler Moore show with her. We watched "Chuckles the CLown Bites the Dust" and mom was laughing throughout the whole episode. We had a great time together, snuggling and watching TV. I gave her a few simple things to do on the bed and she occupied herself on and off between watching TV. It was great spending time with her today!
Peace and be well,
~Claudia
Today started with Rie, Phil, Pat, Michael, and Gina all visiting with mom. Pat brought mom a bouquet of flowers. Mom said they were beautiful. Jean showed up and when mom saw him she said, "Oh my God!" and smiled ear to ear! Con, Anthony, Anthony Michael, Samantha and Ava also came. I brought some Christmas music with guitar chords and Phil played the guitar and everyone sang. Mom smiled. Dad then came and we all sang and made mom laugh. Phil, Rie and Pat left and the rest of us watched miracle on 34th street. Mom laughed at certain parts of the movie. I left and Terry came to visit. They continued to watch Christmas movies. John and I came back later in the evening to put mom to bed. Dad was there and he told us that mom was trying to take the pulse-ox off her finger. She actually asked dad, "Take this off." Dad said no it has to stay on and mom said, "Stop it, stop it." Dad tried to explain why it had to be on and mom said, "I'm not talking to you." Dad was smiling while he told the story, but I worry about him. When dad left he said, "Dotty, I love you." mom didn't say anything so he said, "Dee, do you love me?" and she said, "Always." It was so great to here her say that. Dad needed that. Lately, mom has been pointing to communicate. THis is a first. She hasn't really requested anything. She will point to a toy (she did this to Anthony today) or to the pen. Before dad left I played the sounds around the house game with mom and showed her two pictures for each sound. The pictures are photos of her house hold items. Mom pointed to the correct pictures. I asked her if she liked the game and she shook her head yes. Dad left and John and I watched the Mary Tyler Moore show with her. We watched "Chuckles the CLown Bites the Dust" and mom was laughing throughout the whole episode. We had a great time together, snuggling and watching TV. I gave her a few simple things to do on the bed and she occupied herself on and off between watching TV. It was great spending time with her today!
Peace and be well,
~Claudia
Saturday, December 18, 2010
Mom Update, December 18, 2010, Saturday
Claudia started the day with mom this morning. Mom was sleepy when she arrived so Claudia began her physical therapy and stretched mom's arms, fingers, legs...then the CNAs came to give mom a shower--that woke her up! When she returned from the shower, Claudia worked on mom's legs and put the 10 inch ball under mom's knee. Mom did 10 nice, high leg lifts with her right leg and 5 with her left!! Then Claudia did the "Sounds around the House" audio CD. For this CD, you listen to a common household sound and then try to identify the picture of what you are listening to. The CD comes with pictures, but Claudia took pictures of things in mom and dad's house that match the audio sounds. Claudia showed her how to point to the pictures...after a few prompts, mom pointed all by herself! and she picked the correct items!! When the sound of the fireplace came on, mom pointed to the picture of the fireplace and then pointed at her chest and said, "Mine." She was right! Claudia had mom do the pegs and pegboard next and mom completed the whole board (25 pegs) as Claudia said, "like lightning speed!!" Then Claudia had mom work on the wooden vehicle puzzle and she said that, as fast as she handed mom a piece, that's how fast mom put the piece in the puzzle. Claudia set mom up for the day then and left. Claudia forgot to mention that, on Wednesday, when mom's friends Flo, Flo and Maureen visited her, Claudia was telling mom to read the book they brought her and Claudia said that it appeared that mom mouthed, "I can't, I had a stroke." Claudia reassured her and told her, "Yes, but you can still read mom."
Dad went to New Jersey to pick up Aunt Sophie this morning and they came to see mom in the early afternoon. Cousin Tommy and his wife, Melissa, came all the way from Pennsylvania today to visit mom. JoAnn came with them. Cousins Danny and Barbara were there visiting with mom too. JoAnn said that mom seemed to really recognize everyone and gave a happy, surprised look when she saw each person!! Tommy and Melissa brought her a beautiful poinsetta and Danny and Barbara brought her some magazines (mom loves to read and can actually do it too) and also a cute penguin. The penguin was wrapped up and the package was tied with a bow and mom took her time to untie the bow carefully and methodically in order to open the present. They all said that mom kept mouthing sentences but no one was able to lip read. JoAnn said that mom became sad when everyone left for dinner. Dad and Aunt Sophie went back to tuck mom in for the night after dinner.
I am feeling better, but I still am not 100% better so I can't see mom yet. As much as it is killing me not to see her, I am finding some consolation in the fact that perhaps I will see a big change in her when I do finally see her because it will be almost a week since I saw her last.
"Weeping may last through the night, but joy comes with the morning" Psalm 30:5
Dad went to New Jersey to pick up Aunt Sophie this morning and they came to see mom in the early afternoon. Cousin Tommy and his wife, Melissa, came all the way from Pennsylvania today to visit mom. JoAnn came with them. Cousins Danny and Barbara were there visiting with mom too. JoAnn said that mom seemed to really recognize everyone and gave a happy, surprised look when she saw each person!! Tommy and Melissa brought her a beautiful poinsetta and Danny and Barbara brought her some magazines (mom loves to read and can actually do it too) and also a cute penguin. The penguin was wrapped up and the package was tied with a bow and mom took her time to untie the bow carefully and methodically in order to open the present. They all said that mom kept mouthing sentences but no one was able to lip read. JoAnn said that mom became sad when everyone left for dinner. Dad and Aunt Sophie went back to tuck mom in for the night after dinner.
I am feeling better, but I still am not 100% better so I can't see mom yet. As much as it is killing me not to see her, I am finding some consolation in the fact that perhaps I will see a big change in her when I do finally see her because it will be almost a week since I saw her last.
"Weeping may last through the night, but joy comes with the morning" Psalm 30:5
Mom Update, December 17, 2010, Friday
Hi Everyone,
Mom started her day with "Jo Ann"!!! Woo Hoo! Shout out to Jo Ann! We are dropping like flies! Kathy is still sick and I had a 7:30 appointment this morning so Jo Ann pitched in. Mom was sleeping when JoAnn got there. She tried to wake mom but mom was out like a light so she began mom’s physical therapy. Mom woke while JoAnn was doing her exercises but not all the way. Mom didn’t really wake up fully until the staff put her in the wheelchair. While JoAnn was there, the respiratory people came in and told JoAnn that mom is doing great with her breathing and has been on just the trach collar without any vent at all for over 48 hours now!! The respiratory person said that breathing well hasn’t been an issue for mom in a while and that the vent is there in case of an emergency only!! JoAnn said that mom was able to cough up a lot of phlegm today and this is a good thing. The respiratory therapist said that every time mom gave a productive cough, her oxygen numbers would go up to a nice healthy high level! She had been having difficulty doing that the last 2 days. Mom wouldn’t let JoAnn work on anything with her at all today. JoAnn texted me at one point and said she was waiting for mom to take out a picket sign because mom is on strike and wouldn’t work on anything at all!! Mom just kept playing with the piggy magnets. Anthony and Con and Dad came to see mom next and they said that mom was in a mood with them too. They tried to play cards, do the sewing cards, and draw but mom would have no part of any of it. At one point, Con sneezed and dad and Anthony said, “Good bless you” and mom said it too!! Con said she wasn't in a bad mood, just didn't want to do anything. Dad stayed with mom until the evening and then I arrived. Dad said mom was good in PT today and stood and did the foot pedals. She is still not able to do the parallel bars (Holding on and supporting her weight - it sounds like gymnastics - parallel bars! We're crazy bit not THAT crazy!) I met dad in the parking lot and he told me about her day. WHen I walked in the room mom was asleep and the wipe off board was on the tray table and dad had written "Dotty and Jean" like a school boy! They are sooooo in love! I woke mom up at one point to see if she would do anything with me. She woke up in a good mood. We see that she will be in a "mood" and then fall asleep and wake up a different person. I think that is part of the frontal lobe damage. I was just happy that she was smiling. I started off with the circle sewing card. I wouldn't let her get off track. I forced her to sew each hole in order and not just make knots (which she will sometimes do) she did a great job and when she was done I showed her the card and ran her finger over the even stitches. Next we did the buttons in the container. She has to push the buttons threw the slit in the top of the container. I tried something new and dumped the buttons in her lap. She independently picked up each button and put them in the container. WHen she was done I helped her open the container and take each button out and place them in the zip lock bag. She had a look of accomplishment on her face. Next we put colored paper clips on colored cardboard. Red paper clips were placed on red cardboard and so on. She did red, yellow, green and blue. When she was done with a color she took each clip off and placed them in my hand. Next we did cutting and she cut out a circle!!! She perfectly cut on the line. I also bought her a cutting activity pad with brightly colored pictures that you cut out. Each picture has a straight or curved line that gets cut out. She cut the monkey picture and when it is cut apart, you hold the two pieces and move them up and down and it looks like the monkey is chewing on an apple! She was cracking up. It is funny, because of course I had to over do it with the monkey and mom gave me a look like, "enough already". Next the respiratory therapist came in and suctioned mom for the night. When it was time to go I put my hands together in prayer and said, "Do you wanna pray?" She made the sign of the cross and we prayed together. Sometimes it is so hard to get out of the house and take the 40 minute drive to see mom, especially in the cold weather, but every time I am there I am soooo glad I went. I turned down the lights, gave her some soft things to hold, and gave her a big hug; snug as a bug in a rug!
"Whoever remains in me and I in him will bear much fruit, for without me you can do nothing" John 15:5
Peace and be well this Holiday season,
~Claud
Mom started her day with "Jo Ann"!!! Woo Hoo! Shout out to Jo Ann! We are dropping like flies! Kathy is still sick and I had a 7:30 appointment this morning so Jo Ann pitched in. Mom was sleeping when JoAnn got there. She tried to wake mom but mom was out like a light so she began mom’s physical therapy. Mom woke while JoAnn was doing her exercises but not all the way. Mom didn’t really wake up fully until the staff put her in the wheelchair. While JoAnn was there, the respiratory people came in and told JoAnn that mom is doing great with her breathing and has been on just the trach collar without any vent at all for over 48 hours now!! The respiratory person said that breathing well hasn’t been an issue for mom in a while and that the vent is there in case of an emergency only!! JoAnn said that mom was able to cough up a lot of phlegm today and this is a good thing. The respiratory therapist said that every time mom gave a productive cough, her oxygen numbers would go up to a nice healthy high level! She had been having difficulty doing that the last 2 days. Mom wouldn’t let JoAnn work on anything with her at all today. JoAnn texted me at one point and said she was waiting for mom to take out a picket sign because mom is on strike and wouldn’t work on anything at all!! Mom just kept playing with the piggy magnets. Anthony and Con and Dad came to see mom next and they said that mom was in a mood with them too. They tried to play cards, do the sewing cards, and draw but mom would have no part of any of it. At one point, Con sneezed and dad and Anthony said, “Good bless you” and mom said it too!! Con said she wasn't in a bad mood, just didn't want to do anything. Dad stayed with mom until the evening and then I arrived. Dad said mom was good in PT today and stood and did the foot pedals. She is still not able to do the parallel bars (Holding on and supporting her weight - it sounds like gymnastics - parallel bars! We're crazy bit not THAT crazy!) I met dad in the parking lot and he told me about her day. WHen I walked in the room mom was asleep and the wipe off board was on the tray table and dad had written "Dotty and Jean" like a school boy! They are sooooo in love! I woke mom up at one point to see if she would do anything with me. She woke up in a good mood. We see that she will be in a "mood" and then fall asleep and wake up a different person. I think that is part of the frontal lobe damage. I was just happy that she was smiling. I started off with the circle sewing card. I wouldn't let her get off track. I forced her to sew each hole in order and not just make knots (which she will sometimes do) she did a great job and when she was done I showed her the card and ran her finger over the even stitches. Next we did the buttons in the container. She has to push the buttons threw the slit in the top of the container. I tried something new and dumped the buttons in her lap. She independently picked up each button and put them in the container. WHen she was done I helped her open the container and take each button out and place them in the zip lock bag. She had a look of accomplishment on her face. Next we put colored paper clips on colored cardboard. Red paper clips were placed on red cardboard and so on. She did red, yellow, green and blue. When she was done with a color she took each clip off and placed them in my hand. Next we did cutting and she cut out a circle!!! She perfectly cut on the line. I also bought her a cutting activity pad with brightly colored pictures that you cut out. Each picture has a straight or curved line that gets cut out. She cut the monkey picture and when it is cut apart, you hold the two pieces and move them up and down and it looks like the monkey is chewing on an apple! She was cracking up. It is funny, because of course I had to over do it with the monkey and mom gave me a look like, "enough already". Next the respiratory therapist came in and suctioned mom for the night. When it was time to go I put my hands together in prayer and said, "Do you wanna pray?" She made the sign of the cross and we prayed together. Sometimes it is so hard to get out of the house and take the 40 minute drive to see mom, especially in the cold weather, but every time I am there I am soooo glad I went. I turned down the lights, gave her some soft things to hold, and gave her a big hug; snug as a bug in a rug!
"Whoever remains in me and I in him will bear much fruit, for without me you can do nothing" John 15:5
Peace and be well this Holiday season,
~Claud
Friday, December 17, 2010
Mom Update, December 16, 2010, Thursday
Hi everyone,
Sorry I didn't write this last night. I started the day with mom. When I first arrived there she her chest was laboring to breathe. She didn't have a look of distress on her face. I called for a respiratory therapist and they came and suctioned her, but it was so thick they had to put saline in the opening (stoma) which was hard to watch. I hel mom's hand and she was then able to be suctioned. This happened twice. A nurse helped me pull her up in the bed so she would sit better. I did her PT and she was in a great mood. She was smiling from the moment I saw her, even with the breathing episode. I set her up with a few things to read and her squishy pig. I cleaned her glasses and the lense popped out so it took a long time to fix them for her. I made an appt. for the optometrist to come to adfust her glasses. I left and Dad was the next to arrive. Dad watched TV with mom and talked to her showing her all of the CHristmas cards that people sent her. A friend from James Street sent a card with cats on it and mom enjoyed looking at it. I came back in the late afternoon after work and Florence, Flo and Maureen (Mom's friends) were there. Mom was right in the middle of the group happy as can be. She shook her head yes and no when she was asked questions. They brought her Christmas gifts so I helped her open them. I positioned a gift bag so she could take the tissue paper out and take out the gift. Maureen and Flo gave mom a great vocabulary book. It is a table tent sort of book that sits on the table and you flip the pages to see new vocabulary. The words are great because they are so interesting (Mom loves words!). Florence gave mom an angel and it said "Friends are gifts form heaven". Mom took it and inspected every nook and cranny. The women left and Dad and I stayed with mom. I noticed that when we touched her legs she winced. Her nurse came in and touch her to talk to her and she had the same reaction. The nurse said she had been in the chair too long and she would move her to the bed early. Dad and I stepped out and they had her in the bed snug as a bug in a rug (one of mom's favorite phrases). Dad and I came in and I gave something to cut. SHe fell asleep with the scissors in her hand. She slept for a while and I left to give my final at St. Joseph's. John left work early today because he also is not feeling well. We had to go to plan "B" today since Thursday is his day to be with mom. I came back after class and dad was talking to her from the bedside. Dad left and I stayed with her grading my tests. They nurses came in to change her and when I came back in the room mom was wide awake. We talked and I made her laugh once! (Ha Anth!) I gave her the scissors again and she cut the brightly colored pictures right on the line. We did a few more activites and then I got her ready for bed. I asked her if she wanted to pray and she made the sign of the cross. I said a prayer and then left for the night. Kathy is still sick and at one point she spoke to mom on the phone and mom was smiling the minute she heard her voice! hopefully Kathy will feel better soon and be back in the routine!
Peace to all this Holiday Season!
~Claud
Sorry I didn't write this last night. I started the day with mom. When I first arrived there she her chest was laboring to breathe. She didn't have a look of distress on her face. I called for a respiratory therapist and they came and suctioned her, but it was so thick they had to put saline in the opening (stoma) which was hard to watch. I hel mom's hand and she was then able to be suctioned. This happened twice. A nurse helped me pull her up in the bed so she would sit better. I did her PT and she was in a great mood. She was smiling from the moment I saw her, even with the breathing episode. I set her up with a few things to read and her squishy pig. I cleaned her glasses and the lense popped out so it took a long time to fix them for her. I made an appt. for the optometrist to come to adfust her glasses. I left and Dad was the next to arrive. Dad watched TV with mom and talked to her showing her all of the CHristmas cards that people sent her. A friend from James Street sent a card with cats on it and mom enjoyed looking at it. I came back in the late afternoon after work and Florence, Flo and Maureen (Mom's friends) were there. Mom was right in the middle of the group happy as can be. She shook her head yes and no when she was asked questions. They brought her Christmas gifts so I helped her open them. I positioned a gift bag so she could take the tissue paper out and take out the gift. Maureen and Flo gave mom a great vocabulary book. It is a table tent sort of book that sits on the table and you flip the pages to see new vocabulary. The words are great because they are so interesting (Mom loves words!). Florence gave mom an angel and it said "Friends are gifts form heaven". Mom took it and inspected every nook and cranny. The women left and Dad and I stayed with mom. I noticed that when we touched her legs she winced. Her nurse came in and touch her to talk to her and she had the same reaction. The nurse said she had been in the chair too long and she would move her to the bed early. Dad and I stepped out and they had her in the bed snug as a bug in a rug (one of mom's favorite phrases). Dad and I came in and I gave something to cut. SHe fell asleep with the scissors in her hand. She slept for a while and I left to give my final at St. Joseph's. John left work early today because he also is not feeling well. We had to go to plan "B" today since Thursday is his day to be with mom. I came back after class and dad was talking to her from the bedside. Dad left and I stayed with her grading my tests. They nurses came in to change her and when I came back in the room mom was wide awake. We talked and I made her laugh once! (Ha Anth!) I gave her the scissors again and she cut the brightly colored pictures right on the line. We did a few more activites and then I got her ready for bed. I asked her if she wanted to pray and she made the sign of the cross. I said a prayer and then left for the night. Kathy is still sick and at one point she spoke to mom on the phone and mom was smiling the minute she heard her voice! hopefully Kathy will feel better soon and be back in the routine!
Peace to all this Holiday Season!
~Claud
Wednesday, December 15, 2010
Mom Update, December 15, 2010, Wednesday
Claudia began the day with mom this morning. They talked and Claudia began her exercises but they were coming to give mom a shower so their visit was cut short. Mom was awake and happy and alert though. Mom was still in bed when Anthony got there this morning. He said she was in a great mood and happy to see him. For the first time, she initiated a hug!! She grabbed his shirt and pulled him to her and put her arm around his neck and hugged him!! They watched TV and chatted and then he called Con on the phone and mom put the phone to her ear again and mouthed words to Con. When they put her in her wheelchair she became tired. Dad visited with mom next. She went to get a hair cut today (Claudia arranged for it—there’s a beauty salon in the facility). Mom is back on the CPAP at night and on the trach collar during the day and the respiratory therapist said that mom’s numbers are good and she is doing well. Mom also went to the gym for physical therapy and stood between the parallel bars, stood for 6 minutes at the standing table, and sat on a stationary bike that you pedal with your feet/legs while pushing the handle bars in and out with her hands/arms. The physical therapist told dad that she didn’t do much but she tried very hard and did accomplish a bit. The therapist said that this is typical and to be expected. Dad said that she was in a good mood and was even making some of her typical faces at dad! The nurse told dad that mom DOES have a urinary tract infection. They are going to put her on an antibiotic to clear it up. Lenny joined dad later on and he said that he asked mom to show him how to work the magnetic piggies that JoAnn gave her and mom rolled her eyes at him but then showed him. She also was sticking a pencil into her therapy ball so Lenny tried to get her to stop doing that but she wouldn’t. When Lenny grabbed the pencil to take it away, mom grabbed back and shook it trying to get him to release it and even told him to “Let go!!!” JoAnn visited mom in the early evening and said that mom gave a look of recognition when she saw her---like an excited look of surprise and smiled at JoAnn. Connie, Sammy and Anthony Michael saw mom tonight and mom was sleepy by the time they arrived. They tucked her in and put her to bed. I didn't see mom today because I still have the clogged head in my sinuses --- hopefully, I will feel better tomorrow and be able to see mom (I don't want to get her sick-God forbid!).
"You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many." 2 Corinthians 1:11
"You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many." 2 Corinthians 1:11
Tuesday, December 14, 2010
Mom Update, December 14, 2010, Tuesday
Anthony started the day with mom this morning. She was on the CPAP (vent assist lowest level) again. I suppose someone from the night shift switched her back over. She went back on the trach collar while Anthony was there because her numbers were good. He said that he stretched her hands and arms and did her full physical therapy range of motion exercises. He talked with her and she drew on the dry erase board too. He said she was happy and woke up as he began her exercises. I had a sinus headache and a but of a stuffed head so I didn't go see mom today--I'll see how I am tomorrow. Anthony said that Con called while he was there with mom twice. He asked mom if she wanted to talk to Con on the phone and mom grabbed the phone and put it to her ear. At one point, she smiled broadly and Anthony asked Con what she was saying to mom and Con said she told mom to remember to smile! Anthony said mom also mouthed a lot of words on the phone but he couldn't tell what she was saying. She fell asleep before they dressed her and put her in the wheelchair.
Dad came to see mom next and said that she was alert and awake and happy. Mom went to a birthday party in the Recreation Room. Yesterday, a woman came to sing in her room and played a piano as well. After the party, mom went to physical therapy in the gym! We don't know how she did there because dad didn't go with her or ask how she did. Dad and mom watched TV until bed time and dad put her to sleep tonight.
"Forgetting what lies behind and reaching forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus." Philippians 3:13-14
Dad came to see mom next and said that she was alert and awake and happy. Mom went to a birthday party in the Recreation Room. Yesterday, a woman came to sing in her room and played a piano as well. After the party, mom went to physical therapy in the gym! We don't know how she did there because dad didn't go with her or ask how she did. Dad and mom watched TV until bed time and dad put her to sleep tonight.
"Forgetting what lies behind and reaching forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus." Philippians 3:13-14
Monday, December 13, 2010
Mom Update, December 13, 2010, Monday
Claudia begin the day with mom. Mom woke with a smile and seemed better than last night. Claudia stretched mom’s hands really well but didn’t want to overdo things in case mom still had the slight temp and infection. We find out the results of the urinalysis in about 3 days. Claudia also found that mom’s left hearing aid doesn’t work again. She spent a lot of time this morning cleaning it and changing battery…but to no avail. We have to send it to get fixed.
Dad arrived when mom was having physical therapy. He said that the therapist said that mom did great today!! He worked with her twice today and both times, she lifted both her left and right legs separately and then even together 4-5 times each. He wanted to bring her to the gym today but the respiratory therapist said not to because mom is back off the vent and only on the trach collar again!! Tomorrow, she will have therapy in the gym again.
Mom was in a good mood when I arrived. At one point, when I was working with her, she rolled her eyes at me!! She also told me to “Stop it” a few times too. Once dad told her not to touch the trach balloon and she wouldn’t stop so he said it sternly and she took his finger to her mouth to bite it. I found a motivating factor when working with mom---I began to tell her, “The doctor said to do this” and she would listen and do whatever I was asking!!! The social worker came in to see how the neurologist appointment went and I updated her and dad and I asked for another Team meeting after the New Year so we could update everyone. I had mom do some of the command cards with me. She read and followed the commands to: “Touch Nose” “Touch Eyes” “Wiggle toes” and “shake head no” without a visual prompt!! I made believe I forgot the last thing she did to see if she could remember but she didn’t. I encouraged her to talk more and she did. I did the calendar with her (Claudia made one) and had her repeat, “The month is December. The day is Monday. The date is December 13, 2010.” She also answered, “December” when I asked her again what month it was. Next, mom and I did the IPAD. We tried vegetable flash cards and mom did them all with coaxing. Then we played the Super Why princess game where you listen to a sound, find the correct matching letter for the sound, then trace the letter and repeat in order to spell a word. Mom seemed to have a better grasp of the whole word rather than the individual letters that spell the word. She was also able to identify the words after she looked at 2 of 3 letters. This is recognition of the part of a whole. Next, mom traced letters and then she played on the virtual piano with dad. She kissed me good-bye when I left for work.
Yesterday, one of the CNAs told me about another patient similar to mom whose family member is dedicated but doesn’t know what to do. She asked if she could give the person our name. I told her no problem. I hope we can help someone else!
Dad said mom was alert and happy and tried to talk to him by mouthing phrases and words after I left. I came back tonight to tuck mom in and found her in bed playing with her Olivia piggies and watching TV. THEY KEPT THE TRACH COLLAR ON HER TONIGHT!!! THIS IS YET ANOTHER STEP TOWARD GETTING RID OF THE TRACH AND THE VENT!!! Pray all goes well. Mom handed me her hearing aid and smiled at me. I switched her toys to her night toys and shut the lights and we prayed together. She smiled at me when I told her I loved her and would return to see her tomorrow…and she also mouthed, “OK.” When I asked if she loved me too, she nodded yes and smiled.
"Give, and you will receive. Your gift will return to you in full--pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back." Luke 6:38
Dad arrived when mom was having physical therapy. He said that the therapist said that mom did great today!! He worked with her twice today and both times, she lifted both her left and right legs separately and then even together 4-5 times each. He wanted to bring her to the gym today but the respiratory therapist said not to because mom is back off the vent and only on the trach collar again!! Tomorrow, she will have therapy in the gym again.
Mom was in a good mood when I arrived. At one point, when I was working with her, she rolled her eyes at me!! She also told me to “Stop it” a few times too. Once dad told her not to touch the trach balloon and she wouldn’t stop so he said it sternly and she took his finger to her mouth to bite it. I found a motivating factor when working with mom---I began to tell her, “The doctor said to do this” and she would listen and do whatever I was asking!!! The social worker came in to see how the neurologist appointment went and I updated her and dad and I asked for another Team meeting after the New Year so we could update everyone. I had mom do some of the command cards with me. She read and followed the commands to: “Touch Nose” “Touch Eyes” “Wiggle toes” and “shake head no” without a visual prompt!! I made believe I forgot the last thing she did to see if she could remember but she didn’t. I encouraged her to talk more and she did. I did the calendar with her (Claudia made one) and had her repeat, “The month is December. The day is Monday. The date is December 13, 2010.” She also answered, “December” when I asked her again what month it was. Next, mom and I did the IPAD. We tried vegetable flash cards and mom did them all with coaxing. Then we played the Super Why princess game where you listen to a sound, find the correct matching letter for the sound, then trace the letter and repeat in order to spell a word. Mom seemed to have a better grasp of the whole word rather than the individual letters that spell the word. She was also able to identify the words after she looked at 2 of 3 letters. This is recognition of the part of a whole. Next, mom traced letters and then she played on the virtual piano with dad. She kissed me good-bye when I left for work.
Yesterday, one of the CNAs told me about another patient similar to mom whose family member is dedicated but doesn’t know what to do. She asked if she could give the person our name. I told her no problem. I hope we can help someone else!
Dad said mom was alert and happy and tried to talk to him by mouthing phrases and words after I left. I came back tonight to tuck mom in and found her in bed playing with her Olivia piggies and watching TV. THEY KEPT THE TRACH COLLAR ON HER TONIGHT!!! THIS IS YET ANOTHER STEP TOWARD GETTING RID OF THE TRACH AND THE VENT!!! Pray all goes well. Mom handed me her hearing aid and smiled at me. I switched her toys to her night toys and shut the lights and we prayed together. She smiled at me when I told her I loved her and would return to see her tomorrow…and she also mouthed, “OK.” When I asked if she loved me too, she nodded yes and smiled.
"Give, and you will receive. Your gift will return to you in full--pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back." Luke 6:38
Sunday, December 12, 2010
Mom Update, December 12, 2010, Sunday
When I arrived at mom’s this morning, she was asleep. Out like a light. I put on the Classical music CD. She must have moved around a lot in her sleep as well because she was all the way over, leaning to the left side of the bed. She also needed to be suctioned badly. I found a respiratory person who came to suction her and then do her trach care (change the neck band, put a clean pad around the opening, clean the opening…also brush her teeth and tongue). This took a while, I talked to mom and stretched out her right hand as this was done. When he finished, mom and I began her physical therapy but were interrupted by the CNA who came to bath mom and get her dressed and put her into her chair. I gave her a manicure and pedicure while she was being dressed and washed… While waiting for mom to be put into the wheelchair, I had mom practice lifting her legs with the ball under her knee. She lifted her right leg 4 times (1/2 way). Once she was in her chair, she was sleepy…before she fell asleep, I had her lift her right leg 4 more times (1/2 way) and her left leg once (1/2 way). As she slept in the wheelchair, I did her full physical therapy/range of motion exercises. Since last Wednesday when mom went to the neurologist, she has been back on the CPAP mode of the vent. They are going to try to wean her to the trach collar again on Monday. When mom woke up between naps, I tried to do the “Command Cards” that my friend at work made for her. These are index cards in a binder that have either pictures on one side with a written command on the other or just written commands on them with no picture. The idea is to state the command and have mom follow it. I have decided that this will be something I will work on diligently with mom so that, by her next appointment with the neurologist, she will be able to follow directions. I began with an assessment run---she kept falling asleep in between—but I began by showing her a card that had 3 different color dots on it and I said the color name of each dot while pointing at it over and over (maybe 3-4 times), then I asked mom to, “Touch___ (whatever color)” and waited to see if she could do it. She couldn’t even begin to touch anything much less a specific color, so I repeated the command and gave her a full manual prompt as I repeated the command again (3 times). Then I tried a different card. By repeating this process with each card, I will be able to determine which cards (if any) mom can do on her own. Then, in the future, I will start with only the cards mom can do and eventually add to the commands with cards she cannot do (one at a time). When she finally woke up, right before I left, I worked on getting mom to follow the command to open and then to close her hands---she couldn’t do it. I also asked her to clasp her hands. No luck there either. When I left her, I put on some music and left her with her lap desk and some magazines to read.
Dad, Anthony, Con and the kids, and later, Lenny and Claudia, all went to visit mom during the afternoon and evening but she slept most of the day and was unresponsive and tired when she was briefly awake. Claudia said that one of the nurses thought mom was really out of sorts too and she took mom's temp and saw that it was 99.8 so she ordered a urinalysis to see if mom has a urinary tract infection which, in older people, can cause dementia-like symptoms! I forgot about that!
“…if you have faith as a mustard seed, you will say to this mountain, “Move from here to there” and it will move; and nothing will be impossible for you.” Matthew 17:20-21
Dad, Anthony, Con and the kids, and later, Lenny and Claudia, all went to visit mom during the afternoon and evening but she slept most of the day and was unresponsive and tired when she was briefly awake. Claudia said that one of the nurses thought mom was really out of sorts too and she took mom's temp and saw that it was 99.8 so she ordered a urinalysis to see if mom has a urinary tract infection which, in older people, can cause dementia-like symptoms! I forgot about that!
“…if you have faith as a mustard seed, you will say to this mountain, “Move from here to there” and it will move; and nothing will be impossible for you.” Matthew 17:20-21
Saturday, December 11, 2010
Mom Update, December 11, 2010, Saturday
Due to some confusion…mom was alone this morning. No one was there to start her day with her. As a result, when dad came to see her at 1:30, she was still in bed, reclined, lights out in room like nighttime, shades still drawn, no hearing aids… It never ceases to amaze me, the lack of care and concern for a human life. It just seems like such common sense to me to treat someone the same way you’d want to be treated…the Golden Rule.
Dad arrived and mom had already been showered. They moved mom to the wheelchair a little while later. Anthony, Con, and Anthony Michael joined him shortly after that. They played cards with mom—she loves that!! The Boy Scouts came and sang today too. Anthony brought a silly looking “Court Jester” type of hat and wore it and mom laughed really hard when he did. They talked and then Anthony helped mom sit up straight a few times by pulling her forward by the hands. Mom pulled herself up a few times! She sat up and tried over and over again to do so. She was sleepy then but didn’t sleep, just sort of mopey. Her head was very tilted to the right side today…I kept trying to work on straightening it up…mid-line. I tried to work with her with puzzles but she wasn’t interested. Terry came to visit mom with dad and I next and she talked to mom and mom watched her as she did. The 4 of us watched Miracle on 34th Street next and mom smiled a lot as she watched (and fell asleep on and off too). She enjoyed watching the movie. She and I continued to watch TV and be together after dad and Terry left. I tucked her in and we prayed together. She removed her hearing aid and eye glasses and folded her hands in prayer then went to sleep as I held her for a while.
“In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.” 1 Peter 1:6-7
Dad arrived and mom had already been showered. They moved mom to the wheelchair a little while later. Anthony, Con, and Anthony Michael joined him shortly after that. They played cards with mom—she loves that!! The Boy Scouts came and sang today too. Anthony brought a silly looking “Court Jester” type of hat and wore it and mom laughed really hard when he did. They talked and then Anthony helped mom sit up straight a few times by pulling her forward by the hands. Mom pulled herself up a few times! She sat up and tried over and over again to do so. She was sleepy then but didn’t sleep, just sort of mopey. Her head was very tilted to the right side today…I kept trying to work on straightening it up…mid-line. I tried to work with her with puzzles but she wasn’t interested. Terry came to visit mom with dad and I next and she talked to mom and mom watched her as she did. The 4 of us watched Miracle on 34th Street next and mom smiled a lot as she watched (and fell asleep on and off too). She enjoyed watching the movie. She and I continued to watch TV and be together after dad and Terry left. I tucked her in and we prayed together. She removed her hearing aid and eye glasses and folded her hands in prayer then went to sleep as I held her for a while.
“In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.” 1 Peter 1:6-7
Mom Update, December 10, 2010, Friday
Hi everyone,
Today I started the day with mom and when I got there dad was already there. Mom was smiling and in a great mood. It was great to see mom gazing at dad with such a big smile. She spoke a few times saying, "What's the matter" and "what" She was very talkative today. Dad and I did PT and then leg lifts with the ball under her knee. She lifted the right leg 8 and 1/2 times. We joked about the half because the last lift was only a little off the bed and didn't touch my hand. She did two lifts with her left. Then we did the theraband and she pushed her right foot against the band 5x and the left 2 little ones. We set her up for the day with her new "Tea" magazine and some objects to amuse her. Ava came by after us and said, "Hi nonny, I just took a test and I got out of school early so I came to see you." Mom said, "How did you do?" Ava was shocked! She said she thought she did well on the test. Ava then wrote I Love You on the wipe off board and mom read it and said, "I love you to pieces!" which is what she always says to the grandchildren. Ava called me upset and said that when she told mom she had to leave, mom squeezed her hand and said, "Don't go. Stay with me." Ava was upset. Dad said she had a great day and when he came back the recreational therapist wrote on the clip board that a woman with a ventriloquist came by and the dummie was singing and mom sang along mouthing the words. She also wrote that mom was laughing at the dummie. Anthony also came by to see mom but mom's mood had changed and she slept while he was there. At one point he went to give her a hug and said, "I want to give you a big hug." Mom said, "Hugs are hard." HE couldn't believe it. Dad stayed with mom late and then me, Con, Anth, Sam and Ava came by late to tuck her in and pray with her. We all held hands and said the Our Father. Mom mouthed the words and when we were done she made the sign of the cross. It has been so hard for our family these past 6 months and it is days like this when mom is so connected that keeps us all going. It has been through the prayers of our family and friends and the prayer we share with mom that give us strength.
Peace and be well,
~Claud
Today I started the day with mom and when I got there dad was already there. Mom was smiling and in a great mood. It was great to see mom gazing at dad with such a big smile. She spoke a few times saying, "What's the matter" and "what" She was very talkative today. Dad and I did PT and then leg lifts with the ball under her knee. She lifted the right leg 8 and 1/2 times. We joked about the half because the last lift was only a little off the bed and didn't touch my hand. She did two lifts with her left. Then we did the theraband and she pushed her right foot against the band 5x and the left 2 little ones. We set her up for the day with her new "Tea" magazine and some objects to amuse her. Ava came by after us and said, "Hi nonny, I just took a test and I got out of school early so I came to see you." Mom said, "How did you do?" Ava was shocked! She said she thought she did well on the test. Ava then wrote I Love You on the wipe off board and mom read it and said, "I love you to pieces!" which is what she always says to the grandchildren. Ava called me upset and said that when she told mom she had to leave, mom squeezed her hand and said, "Don't go. Stay with me." Ava was upset. Dad said she had a great day and when he came back the recreational therapist wrote on the clip board that a woman with a ventriloquist came by and the dummie was singing and mom sang along mouthing the words. She also wrote that mom was laughing at the dummie. Anthony also came by to see mom but mom's mood had changed and she slept while he was there. At one point he went to give her a hug and said, "I want to give you a big hug." Mom said, "Hugs are hard." HE couldn't believe it. Dad stayed with mom late and then me, Con, Anth, Sam and Ava came by late to tuck her in and pray with her. We all held hands and said the Our Father. Mom mouthed the words and when we were done she made the sign of the cross. It has been so hard for our family these past 6 months and it is days like this when mom is so connected that keeps us all going. It has been through the prayers of our family and friends and the prayer we share with mom that give us strength.
Peace and be well,
~Claud
Mom Update, December 9, 2010, Thursday
Hi,
I started the day with mom and she was in a great mood. She was happy to see me and smiled. I straightened her up in the bed and washed her face. I put her hearing aids in and cleaned her glasses. I did the range of motion exercises with her and she was very cooperative. The first thing I noticed was that the machine was on and it was on cpap. I became concerned and asked to see a respiratory therapist. The therapist said that her CO2 levels were off. They were a 44 and her range is 35-40. She told me that this meant she wasn't breathing enough. She also said she would check in during the day to see if she could put the colar (oxygen only) back on. WHen dad and John got there in the afternoon the cpap was still on. They told them the same thing and that first thing in the morning they would reassess and try to take her off the cpap. THey said that they had already begun to ween her from a 4 to a 2 (John wasn't sure what those numbers meant but that after a 2 she is taken off the cpap). WHile I was there I also did her leg lifts with the ball under her knee and she lifted her right foot 5x and didn't lift the left at all. I also had her do the exercise with the theraband and she did the right 4x and nothing on the left. I then took out some coupons and drew a black majic marker line on the place where she had to cut and she cut out the coupons. She was really concentrating. I then gave her a choice of her crossword or word search books (they are adaptive, large print with only a few words per page - they also have the answer written lightly in pencil for her to trace). She chose the cross word book. I laminated them so she could use a wipe off crayon. I left her a crayon and the big nut and bolt. Cousin Jo Ann gave mom two pigs that attach by the snout with magnets. Mom loves them so I left them as well. John did nuts and bolts and a few other activites but said that once she was put in bed for the evening she was out like a light. Dad and John stayed so theycould put mom to bed (take out hearing aids and take off glasses). John said he had time to talk to dad and that may have been just as important as working with mom. Let's pray that the cpap is turn off tomorrow when I get there and that she is breathing ok.
Believe in miracles!
Claudia
I started the day with mom and she was in a great mood. She was happy to see me and smiled. I straightened her up in the bed and washed her face. I put her hearing aids in and cleaned her glasses. I did the range of motion exercises with her and she was very cooperative. The first thing I noticed was that the machine was on and it was on cpap. I became concerned and asked to see a respiratory therapist. The therapist said that her CO2 levels were off. They were a 44 and her range is 35-40. She told me that this meant she wasn't breathing enough. She also said she would check in during the day to see if she could put the colar (oxygen only) back on. WHen dad and John got there in the afternoon the cpap was still on. They told them the same thing and that first thing in the morning they would reassess and try to take her off the cpap. THey said that they had already begun to ween her from a 4 to a 2 (John wasn't sure what those numbers meant but that after a 2 she is taken off the cpap). WHile I was there I also did her leg lifts with the ball under her knee and she lifted her right foot 5x and didn't lift the left at all. I also had her do the exercise with the theraband and she did the right 4x and nothing on the left. I then took out some coupons and drew a black majic marker line on the place where she had to cut and she cut out the coupons. She was really concentrating. I then gave her a choice of her crossword or word search books (they are adaptive, large print with only a few words per page - they also have the answer written lightly in pencil for her to trace). She chose the cross word book. I laminated them so she could use a wipe off crayon. I left her a crayon and the big nut and bolt. Cousin Jo Ann gave mom two pigs that attach by the snout with magnets. Mom loves them so I left them as well. John did nuts and bolts and a few other activites but said that once she was put in bed for the evening she was out like a light. Dad and John stayed so theycould put mom to bed (take out hearing aids and take off glasses). John said he had time to talk to dad and that may have been just as important as working with mom. Let's pray that the cpap is turn off tomorrow when I get there and that she is breathing ok.
Believe in miracles!
Claudia
Wednesday, December 8, 2010
Mom Update, December 8, 2010, Wednesday
Mom saw the neurologist today. He said that he is “very pleased with her obvious progress” compared to how she was when he last saw her back in late September/early October. He said that the biggest improvement he sees is that “The light is now on.” She is now present, here, aware. He doesn’t know where she will end up but that mom is going in the right direction and that he sees progress. He said that he sees a big difference in her progress between the first time he saw her and now. He asked me to report on mom’s progress and where she’s at now. I told him everything mom can do and that we have videotape of her a month ago and now and he would look at it. I told him that mom is still not conversational though and that she doesn’t use our names. He said it is common to for people like mom to understand more than she is able to express---expressive aphasia (he isn’t saying she has this, but that it is possible). Basically, she is in a good, hopeful place. She certainly isn’t at a dead end by any means. She will be slow to heal but we can expect progress and recovery. He quickly examined her and then also reviewed all the EEG and CAT scan results. He told us that her EEG showed that there was no seizure activity and that her CAT scan looked good as well. He said that her damage at the site of the aneurysm was in the frontal lobe which controls attention, cognition, decision making, personality…When I asked about mom’s attention and the possibility of mom needing attention medication, he said it was too early to determine that. He said that mom is a clear example of “brain plasticity” which is the ability of the brain to rewire itself so that damaged areas stay damaged and other areas take over the jobs that the damaged areas once did. This is also called ‘neuroplasticity.’ I told him about all that we are doing with mom and he said that is GREAT! Keep working with her the way we are now and to even work more steadily with her and more often because she is now in a window of opportunity after an aneurysm or stroke---over the next 3-9 months we can expect to see a more rapid brain recovery in both pace and quantity especially if we continue to work with her as we have been. After this time frame, she still can continue to progress but at a much slower pace and not as much in quantity at once. It’s not that she will not progress or plateau just at a slower pace. He spoke about the sleep apnea and he feels that it is obstructional sleep apnea and not central sleep apnea because she has no brain stem damage which causes central sleep apnea. I told him about mom writing lately and he said that’s good but he asked if she was writing sensibly and I said no just copying now. He said this is good. He wants us to work toward communicative interactions – speaking, pointing, writing… He stressed the importance of working with mom as we have been. He asked her to raise her left arm (weak side), bend her knee, track his face and hand, and asked her what month, day, date it was (we don’t and haven’t worked on that yet). Mom looked him in the eye and reached to shake his hand when he greeted her. When he asked how she was, she mouthed, ‘Fine.’ When I asked him again about mom’s attentional deficits, he said her attention is fine for someone this far into recovery and that no medication is needed yet because of the side effects of drugs. He wants her on no drugs as long as possible. He said that it is hard to assess her fully without the ability to speak. He said that based on what we have told him about her, she is going forward and progressing and that he sees it as well. He said that we can have every expectation that mom will recover more and progress further based on her current recovery (brain scans…) and our reports of her recovery and progress. He said that he will eventually do an MRI with contrast but not in the near future due to mom needing to recover more first (it can be risky to do if mom’s brain isn’t ready). An MRI will show specific details about where the damage is and how much. He said that based on her EEG there is definite brain damage but how much or what kind is still unknown and this is a good thing---because it means mom can progress from here as per what the doctor said. The damage that is evident relates to an overall “slowing down” of the brain’s functioning. Mom is processing things much more slowly right now…but this too can change. He has every hope that, based on her current progress and reports, she will continue to progress---how far, is uncertain. He said that he wants to see her every 3 months right now. He asked or commented, “She’s getting Occupational Therapy, physical therapy, and speech, right?” I told him no, just physical therapy and he asked why not. I told him we fought for physical therapy and got but no luck with the speech and occupational—it’s is something they won’t agree to. He said that once she can obey more commands, they’ll give it to her. He wrote her a prescription for physical therapy because he wants her to get that. He said she is in a place of hopeful progression and recovery. He couldn’t stress enough the importance of us continuing our programs with her and working with her as we have been. He’s attributing much of her—if not all of her—progress to what we are doing with her.
Today, Lenny started the day with mom before school. He washed her face, put her hearing aids in and glasses on, opened the blinds, turned on all the lights and set up her bed tray and placed activities on the tray. He said that he asked if she wanted her purple blanket and she said yes out loud. She reached to touch his beard and he commented that he grew it again. He told her that her legs were getting muscular and that she’d be running races with him soon. Then he made a muscle in his arm flex and mom felt it like she used to and made the same face she used to as well. He said that they worked on throwing and catching and mom ACTUALLY CAUGHT THE BALL!!!! OVER AND OVER!!! AND SHE EVEN THREW THE BALL!!!!!!! This is monumental!!!! She usually doesn’t let go.
Anthony, Con, Dad and I saw her before the neurologist visit. Anthony had her laughing again. And when she and I were in the ambulance waiting to go into the doctor’s office, she got angry at me and grit her teeth at me, grabbed my hand and mouthed/yelled, “STOP IT NOW!!” because I was trying to make her stop opening the medical cabinet in the ambulance. She kept giving me the “eye” too because I was stopping her from doing this. She is too funny!!! I sternly told her, “Look at me. NO touching” and she smiled and laughed!!
Lenny tucked mom in tonight after dad left her.
We have hope.
"Hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit that has been given to us" Romans 5:5
Today, Lenny started the day with mom before school. He washed her face, put her hearing aids in and glasses on, opened the blinds, turned on all the lights and set up her bed tray and placed activities on the tray. He said that he asked if she wanted her purple blanket and she said yes out loud. She reached to touch his beard and he commented that he grew it again. He told her that her legs were getting muscular and that she’d be running races with him soon. Then he made a muscle in his arm flex and mom felt it like she used to and made the same face she used to as well. He said that they worked on throwing and catching and mom ACTUALLY CAUGHT THE BALL!!!! OVER AND OVER!!! AND SHE EVEN THREW THE BALL!!!!!!! This is monumental!!!! She usually doesn’t let go.
Anthony, Con, Dad and I saw her before the neurologist visit. Anthony had her laughing again. And when she and I were in the ambulance waiting to go into the doctor’s office, she got angry at me and grit her teeth at me, grabbed my hand and mouthed/yelled, “STOP IT NOW!!” because I was trying to make her stop opening the medical cabinet in the ambulance. She kept giving me the “eye” too because I was stopping her from doing this. She is too funny!!! I sternly told her, “Look at me. NO touching” and she smiled and laughed!!
Lenny tucked mom in tonight after dad left her.
We have hope.
"Hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit that has been given to us" Romans 5:5
Tuesday, December 7, 2010
Mom Update, December 7, 2010, Tuesday
I started mom’s day with her. When I arrived, mom was sitting in bed awake with a serene look on her face and a smile and it came to me that she looked like she was praying. When I began to talk to mom, she put a finger to her lips to shush me and closed her eyes and continued to meditate. Maybe she is finally resting in God. I readied her room and turned around to see that she had been holding something in her hand the whole time---her trach balloon!!! She had ripped off a piece of her trach! I took the piece from her hand—after fighting her for it!! She had a tight grip on it. I brought the piece down to the respiratory therapist (the 2nd in command) and she panicked and said, “Oh that’s not good” and began to call for assistance. She was initially concerned that mom’s alarm didn’t go off but soon found that it didn’t need to go off because mom wasn’t in any respiratory distress. Thank God!! She is breathing fine. They had to change her trach because of this. As they worked on her, she frequently tried to push their hands away and/or made gestures with her hands as if to say, “What are you doing to me?!” This level of awareness is all a good thing. I called one of the nurses to help me pull mom up in the bed (it always amazes me how no one thinks about the position she may be in while sitting and how it could affect her breathing by obstructing her airways!). When they left, the head of respiratory came in and said hello to mom—she responded by waving at him with her index finger and smiling. He was amazed. He asked how mom was and she mouthed, “I’m OK” then he asked if she slept well and she shook her head, “Yes” with a smile. He was blown away at her level of awareness. I set mom’s bed tray up and gave her the small magna doodle, her pencil, some paper, a squeeze ball, her sewing card and a nut and bolt. She chose the pencil and paper and immediately began writing something. I kissed her good bye and left for work.
Dad came to see mom next just before lunchtime. Later in the afternoon, they both went to the Recreation Room to decorate gingerbread men Christmas ornaments. Claudia joined them there later on. Claudia said that mom was in a good mood. Dad and mom decorated one together. Claudia accidentally kicked mom’s feet and mom said, “Oh my feet, WATCH!” Then mom was grabbing at the blanket of the lady next to her and saying, “Tell that lady…” but didn’t finish and repeated this over and over and never finished. Claudia kept telling her to keep her hands in her own chair! Mom was sewing her sewing card while Claudia showed her FRUITS on the I-TOUCH and with each new fruit, mom stopped sewing, looked at the picture and labeled the fruit independently. When they got to the strawberries, mom used a pincer grasp to grab the strawberry and put it to her mouth and looked Claudia in the eye and put it to her mouth. Claudia told her, “I know you want to eat a strawberry. Soon you’ll be eating. Soon. Just keep getting better like you are.” She labeled things like: “PEACHES, WATERMELON…” Claudia put a drawing program on next and mom drew all over with the stylus and her finger. Then Claudia tried to make another gingerbread man ornament but mom wouldn’t do it and the more Claudia prompted her, the more mom did it all wrong---almost on purpose. She took the eyes and put them on the hand and looked at Claudia like, “Did I do it right?” When they finished, mom ripped it up. They moved mom back to her room then. Claudia did the tangrams on the IPAD there. Claudia did about 5 pictures hand over hand, then modeled, and mom did 1 or 2 by herself!! (Shape matching). Then mom pushed the IPAD away. Then mom did nuts and bolts. Took them apart and then tightened them. Then she played with the magnetic piggies that JoAnn bought her (“when pigs fly”)---putting them together and pulling them apart over and over and also making them reach each other. Then they came to put her into bed. Dad and Claudia went then to buy mom a sweat suit for mom’s neurologist appointment tomorrow.
JoAnn came to sit with mom and dad next. Mom was sleeping the whole time. Then dad left and Con, Sammy, and Anthony Michael came to sit with JoAnn. Mom was coughing a lot when she woke up. They all talked to her and mom played with a little ball. She mouthed things to them but they didn’t understand her. Mom blew mom kisses as JoAnn blew them to her. Yu could tell which people mom likes and doesn’t like when they enter her room. Then they left and got mom ready for bed, and they said the “Our Father” for the night time prayer and Sammy said that mom made the sign of the cross when they did.
Also, several people who work at the facility commented to dad that he looked tired and asked if he was OK. Dad is having a hard time again…please keep him in prayer. Thanks.
"if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20
Dad came to see mom next just before lunchtime. Later in the afternoon, they both went to the Recreation Room to decorate gingerbread men Christmas ornaments. Claudia joined them there later on. Claudia said that mom was in a good mood. Dad and mom decorated one together. Claudia accidentally kicked mom’s feet and mom said, “Oh my feet, WATCH!” Then mom was grabbing at the blanket of the lady next to her and saying, “Tell that lady…” but didn’t finish and repeated this over and over and never finished. Claudia kept telling her to keep her hands in her own chair! Mom was sewing her sewing card while Claudia showed her FRUITS on the I-TOUCH and with each new fruit, mom stopped sewing, looked at the picture and labeled the fruit independently. When they got to the strawberries, mom used a pincer grasp to grab the strawberry and put it to her mouth and looked Claudia in the eye and put it to her mouth. Claudia told her, “I know you want to eat a strawberry. Soon you’ll be eating. Soon. Just keep getting better like you are.” She labeled things like: “PEACHES, WATERMELON…” Claudia put a drawing program on next and mom drew all over with the stylus and her finger. Then Claudia tried to make another gingerbread man ornament but mom wouldn’t do it and the more Claudia prompted her, the more mom did it all wrong---almost on purpose. She took the eyes and put them on the hand and looked at Claudia like, “Did I do it right?” When they finished, mom ripped it up. They moved mom back to her room then. Claudia did the tangrams on the IPAD there. Claudia did about 5 pictures hand over hand, then modeled, and mom did 1 or 2 by herself!! (Shape matching). Then mom pushed the IPAD away. Then mom did nuts and bolts. Took them apart and then tightened them. Then she played with the magnetic piggies that JoAnn bought her (“when pigs fly”)---putting them together and pulling them apart over and over and also making them reach each other. Then they came to put her into bed. Dad and Claudia went then to buy mom a sweat suit for mom’s neurologist appointment tomorrow.
JoAnn came to sit with mom and dad next. Mom was sleeping the whole time. Then dad left and Con, Sammy, and Anthony Michael came to sit with JoAnn. Mom was coughing a lot when she woke up. They all talked to her and mom played with a little ball. She mouthed things to them but they didn’t understand her. Mom blew mom kisses as JoAnn blew them to her. Yu could tell which people mom likes and doesn’t like when they enter her room. Then they left and got mom ready for bed, and they said the “Our Father” for the night time prayer and Sammy said that mom made the sign of the cross when they did.
Also, several people who work at the facility commented to dad that he looked tired and asked if he was OK. Dad is having a hard time again…please keep him in prayer. Thanks.
"if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20
Monday, December 6, 2010
Mom Update, December 8, 2010, Monday
I began mom’s day with her this morning. I arrived early and she was sleeping, so I let her rest a bit before we began the day. I checked her charts and it seems that she stayed on the CPAP mode all night—no assist from the vent---thank God. When I woke mom later by washing her face and doing her physical therapy/range of motion exercises, she was alert and smiled at me. Next, I began to work on getting mom to lift her legs with the ball under her knee. Mom didn’t lift her leg at all. She was able to wiggle her toes on command and to move her ankles too.
Our friend who works here (I won’t say who or the job) came in to see mom this morning. She loves mom so much. She is the person who had the dream about mom when her grandmother died. She and I are here with mom talking. The sweetest respiratory therapist just came in. She is taking mom off the vent!!! She set up a monitor that connects to a cord with a light and the lit part gets taped to mom’s index finger. This monitors mom’s heart rate and breathing rate. The bottom number on the machine should not go above 100 (67 to start) and the top number shouldn’t drop below 90 (98 to start). MOM IS OFF THE VENT!!!!!!!!!!!!!!!!!!! Oh my Lord!!!! I can’t stop crying!! (not in front of mom—crying with our friend away from mom). Now, the respiratory person is putting a cup-like piece over the now open trach area and it is held with a thin strap around mom’s neck. There is a blue hose connected to the cup that is hooked to the oxygen and it blows air around the trach hole opening (not into it like CPAP). So mom still has a hose but only one not two. Mom is doing GREAT!!!! She is coughing a lot and looks fearful when she does but her numbers stay good while she coughs and she is producing productive coughs!! This is good!! She is able to move the fluid in her chest well!!! I CAN’T BELIEVE THIS!!! Thank the Lord!!!!! Our friend who works here is with me and we are both standing beside mom encouraging her and praying over her as she takes her first breaths. Mom is doing great! Just so visitors know, she can still be suctioned but they don’t want to do it unless it is an emergency---they’d rather have mom cough on her own in order to build her lungs and improve her breathing. Every time a person walks into mom’s room, I tell her to tell them her good news—that she’s off the vent—and she is all smiles as I say it. When her nurse heard the news, she began to sing the Alleluia chorus!!!
Claudia and Anthony came to visit with mom next with me. We all talked with her. She was reading her, “All About Me” book with us. She slept a lot on and off. In between sleeping, she wanted to write and draw. Claudia, Anthony and I spoke to the head respiratory therapist just now. He said that the next steps are as follows. Mom stays on the CPAP at night and the trach collar (what she has now) during the day for another week or 2. Then she will go on just the trach collar for day AND night for another week or 2. Then she will have no trach collar and the trach will be capped off day and night for a week or 2. Then the trach comes out totally. He said that there are 2 types of sleep apnea. The kind mom had at home is obstructive sleep apnea which is an obstruction in the airway---the airway closes usually due to weight but can be from other causes. The other type is a central sleep apnea where the brain forgets to breath. He said she is doing remarkably well. He told us to show her off and what she can do when we go to the neurologist this week. He also told us that he watched an informercial last night and they were selling CDs for $360 for the set and that it had to do with neuroplasticity. He said it reminded him of mom and what we are doing with her. I told him he is right on target. He thinks that it can’t work with everyone though---but he is incorrect; neuroplasticity works with us all.
Anthony and I tried to get mom to lift her legs but all we were able to get her to do was to wiggle her feet and move them around, but no leg lifting. She kept telling us, “No” when we asked her to lift them. The physical therapist came in next and he was able to get mom to lift her right leg 5 times and her left leg once high and very, very slightly about 3 times. I saw mom stand for the first time today!! What a wonderful machine! There’s a type of harness/sling that goes under her butt and it hooks to a lift that is attached to a table. The lift hoists the harness and boosts mom to a standing position. She stands at the attached table supported by the harness while her elbows are resting on the table as she puts her hands flat on the table. Today, mom stood 2 times!!!!!!!!!!!!!! Each time she stood for 6 minutes!!!! 12 minutes total!!! The second time mom stood, she actually tried to straighten herself out – to stand straight! She also bore more weight on her legs too! The physical therapist said that, although mom is standing well and for long, this type of activity is still considered “passive” activity. This is going on her 6th week of physical therapy and she is approved for 8 weeks as of now so she needs to do more in the next week or so in order to continue with the therapy beyond 8 weeks.
We also saw the speech therapist who said that she keeps close contact with the respiratory people. She said that in the next week or so she will begin to teach mom to swallow.
Dad came to see mom this afternoon and I left.
JoAnn came to sit with mom tonight but she slept the whole time.
"For the Mighty One is holy, and he has done great things for me. " Luke 1:49
Our friend who works here (I won’t say who or the job) came in to see mom this morning. She loves mom so much. She is the person who had the dream about mom when her grandmother died. She and I are here with mom talking. The sweetest respiratory therapist just came in. She is taking mom off the vent!!! She set up a monitor that connects to a cord with a light and the lit part gets taped to mom’s index finger. This monitors mom’s heart rate and breathing rate. The bottom number on the machine should not go above 100 (67 to start) and the top number shouldn’t drop below 90 (98 to start). MOM IS OFF THE VENT!!!!!!!!!!!!!!!!!!! Oh my Lord!!!! I can’t stop crying!! (not in front of mom—crying with our friend away from mom). Now, the respiratory person is putting a cup-like piece over the now open trach area and it is held with a thin strap around mom’s neck. There is a blue hose connected to the cup that is hooked to the oxygen and it blows air around the trach hole opening (not into it like CPAP). So mom still has a hose but only one not two. Mom is doing GREAT!!!! She is coughing a lot and looks fearful when she does but her numbers stay good while she coughs and she is producing productive coughs!! This is good!! She is able to move the fluid in her chest well!!! I CAN’T BELIEVE THIS!!! Thank the Lord!!!!! Our friend who works here is with me and we are both standing beside mom encouraging her and praying over her as she takes her first breaths. Mom is doing great! Just so visitors know, she can still be suctioned but they don’t want to do it unless it is an emergency---they’d rather have mom cough on her own in order to build her lungs and improve her breathing. Every time a person walks into mom’s room, I tell her to tell them her good news—that she’s off the vent—and she is all smiles as I say it. When her nurse heard the news, she began to sing the Alleluia chorus!!!
Claudia and Anthony came to visit with mom next with me. We all talked with her. She was reading her, “All About Me” book with us. She slept a lot on and off. In between sleeping, she wanted to write and draw. Claudia, Anthony and I spoke to the head respiratory therapist just now. He said that the next steps are as follows. Mom stays on the CPAP at night and the trach collar (what she has now) during the day for another week or 2. Then she will go on just the trach collar for day AND night for another week or 2. Then she will have no trach collar and the trach will be capped off day and night for a week or 2. Then the trach comes out totally. He said that there are 2 types of sleep apnea. The kind mom had at home is obstructive sleep apnea which is an obstruction in the airway---the airway closes usually due to weight but can be from other causes. The other type is a central sleep apnea where the brain forgets to breath. He said she is doing remarkably well. He told us to show her off and what she can do when we go to the neurologist this week. He also told us that he watched an informercial last night and they were selling CDs for $360 for the set and that it had to do with neuroplasticity. He said it reminded him of mom and what we are doing with her. I told him he is right on target. He thinks that it can’t work with everyone though---but he is incorrect; neuroplasticity works with us all.
Anthony and I tried to get mom to lift her legs but all we were able to get her to do was to wiggle her feet and move them around, but no leg lifting. She kept telling us, “No” when we asked her to lift them. The physical therapist came in next and he was able to get mom to lift her right leg 5 times and her left leg once high and very, very slightly about 3 times. I saw mom stand for the first time today!! What a wonderful machine! There’s a type of harness/sling that goes under her butt and it hooks to a lift that is attached to a table. The lift hoists the harness and boosts mom to a standing position. She stands at the attached table supported by the harness while her elbows are resting on the table as she puts her hands flat on the table. Today, mom stood 2 times!!!!!!!!!!!!!! Each time she stood for 6 minutes!!!! 12 minutes total!!! The second time mom stood, she actually tried to straighten herself out – to stand straight! She also bore more weight on her legs too! The physical therapist said that, although mom is standing well and for long, this type of activity is still considered “passive” activity. This is going on her 6th week of physical therapy and she is approved for 8 weeks as of now so she needs to do more in the next week or so in order to continue with the therapy beyond 8 weeks.
We also saw the speech therapist who said that she keeps close contact with the respiratory people. She said that in the next week or so she will begin to teach mom to swallow.
Dad came to see mom this afternoon and I left.
JoAnn came to sit with mom tonight but she slept the whole time.
"For the Mighty One is holy, and he has done great things for me. " Luke 1:49
Sunday, December 5, 2010
Mom Update, December 5, 2010, Sunday
When I got to mom this morning, she was dressed and sitting in her wheelchair, watching TV and reading a magazine. The respiratory therapist told me that mom had a few periods of sleep apnea last night at 3 a.m. so they put her on the vent with a setting of 10. She said that it wasn’t anything terrible, but more that they were short staffed, which is why mom was on the vent this morning when I arrived too. She put mom back on CPAP mode (off the vent) after we spoke. I told her that mom is supposed to go off the vent during the day starting tomorrow. She said that the night people tend to err with caution. The respiratory therapist asked how mom is doing because she hasn’t seen her in 2 weeks. I updated her and she said she wanted to work with mom a bit and either read to scripture verses from her book to her or talk to her… I thought that was really sweet. Mom sees the neurologist on Wednesday afternoon.
Mom and I began to use stencils today. I brought some from Lenny when he was little. Mom was able to trace some dinosaurs!! Next we began to do the Word Search book that Claudia made and she circled 2 words with prompting but then Ant, Con and the kids came so we shifted to cutting with scissors since the kids were making snowflakes to hang in the room. Mom was all smiles when Sammy came into the room and said Hi! Anthony had mom laughing again as usual too! Mom listened as everyone talked and she and the kids cut with the scissors all afternoon. That’s all she wanted to do today. It was a fun activity because she was engaging with the kids. Anthony worked on her legs and tried to get her to lift them. She raised her right leg 2 times and her left leg once. John and Claudia came to see mom too for a while, so did Terry. They said she was talking a lot today. When I came back around dinner time, mom was being put back in bed. I tried to see if I could get her to do some writing but she wouldn’t do it. I brought her the Holiday House Tour booklet from Islip Town and she sat and read it for hours (she would read and fall asleep and read and fall asleep). JoAnn came to visit mom tonight! She is here from New Jersey.
Mom still isn’t able to integrate everything at once. If she is working on fine motor skills with her hands, then she isn’t talking much or moving her legs. If she is moving her legs, she isn’t doing much fine motor or talking. She has made strides with her fine motor skills at the end of the week and her leg lifting has seemed to decrease. Eventually, she will get it all together and be able to do many things at once again.
“Under His direction the whole body is fitted together perfectly, and each part in its own special way helps the other parts.” Ephesians 4:16
Mom and I began to use stencils today. I brought some from Lenny when he was little. Mom was able to trace some dinosaurs!! Next we began to do the Word Search book that Claudia made and she circled 2 words with prompting but then Ant, Con and the kids came so we shifted to cutting with scissors since the kids were making snowflakes to hang in the room. Mom was all smiles when Sammy came into the room and said Hi! Anthony had mom laughing again as usual too! Mom listened as everyone talked and she and the kids cut with the scissors all afternoon. That’s all she wanted to do today. It was a fun activity because she was engaging with the kids. Anthony worked on her legs and tried to get her to lift them. She raised her right leg 2 times and her left leg once. John and Claudia came to see mom too for a while, so did Terry. They said she was talking a lot today. When I came back around dinner time, mom was being put back in bed. I tried to see if I could get her to do some writing but she wouldn’t do it. I brought her the Holiday House Tour booklet from Islip Town and she sat and read it for hours (she would read and fall asleep and read and fall asleep). JoAnn came to visit mom tonight! She is here from New Jersey.
Mom still isn’t able to integrate everything at once. If she is working on fine motor skills with her hands, then she isn’t talking much or moving her legs. If she is moving her legs, she isn’t doing much fine motor or talking. She has made strides with her fine motor skills at the end of the week and her leg lifting has seemed to decrease. Eventually, she will get it all together and be able to do many things at once again.
“Under His direction the whole body is fitted together perfectly, and each part in its own special way helps the other parts.” Ephesians 4:16
Saturday, December 4, 2010
Mom Update, December 4, 2010, Saturday
Claudia started the day with mom this morning. She combed her hair, washed her face and got her ready for the day. As promised, mom went back on CPAP mode on the vent again by this morning when last night’s respiratory therapist left at 6 a.m. Claudia did mom’s full physical therapy/range of motion exercises. Dad came early today too. They tried to get mom to write numbers and letters and they also tried to get mom to trace some too. Mom did both. Claudia made mom some word search books with large print and not many words on a page. Claudia also made mom some simplistic crossword puzzles as well. Mom loved doing crossword puzzles before all this happened in June. Claudia introduced both books of activities and showed mom what to do hand over hand. Mom even circled some words alone (1-2). Anthony, Con, Sammy, and Anthony Michael came to see mom next—they joined dad and Claudia. They all talked and watched TV and then they asked mom if she wanted to play cards. The played “31” (I think that’s the right name!! I don’t really play cards!! Hahah!). Mom tried to shuffle the cards (but couldn’t) and she also cut the cards (at one point she even gave the deck a karate chop to cut them and everyone laughed). She holds her hand of cards really well and with a lot of dexterity. They all said that mom fell asleep on and off a lot during the day. She had her bi-weekly shower today and that tires her out. Dad and Claudia left and Ant, Con and the kids stayed until dinner time when mom was being moved back into bed. Lenny and I joined them at dinner and we all came back to mom together when we were through. Mom was sleeping so everyone but me went home. I am here now grading papers while mom sleeps. I want to stay until 9:00-9:30 to see if she has any anxiety attacks tonight. So far, she is peaceful. I will tuck mom in and pray over her before I leave.
“The only letter I need is you yourselves! They can see that you are a letter from Christ written by us…not one carved on stone, but in human hearts.” 2 Corinthians 3:2-3
“The only letter I need is you yourselves! They can see that you are a letter from Christ written by us…not one carved on stone, but in human hearts.” 2 Corinthians 3:2-3
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