Friday, December 26, 2008
FRIDAY - 12/19
Sorry for the delay, but here's another update from David...
DAD IS THRIVING!
Elizabeth made a trip from Memphis to Nashville this week to see Dad. She spent all of the afternoon of December 17 and all day on December 18 with Dad. She found him making remarkable headway with his rehab. The morning of the 17th the physical therapist reported he had walked for the first time since November 9 using a walking frame – 1000 paces! Elizabeth saw him using the walker on the 17th. With no active support from the therapists, he used the frame to walk some 500 paces down a long corridor to a physical therapy gym. At the end of the rehab session, he returned again under his own power. Dad grows more alert and for longer intervals. His doctors have been using Ritalin to stimulate parts of the brain that create focus. It has had a dramatic effect.
On December 17, Mother, Elizabeth, and David joined Dad as he ate his evening meal. When David arrived at five Dad was lying in bed in his sweatsuit (Razorback red pants with stripes). A nurse came in and directed Dad’s movements to manuveur himself off the bed and onto his feet so he could sit in a waiting wheelchair. Then the nurse wheeled him in to a therapy/exercise room that had large tables. He joined three other patients at those tables for his hot meal. He now gets solid food that is prepped only by pre-cutting it to bite size chunks. He ate as well or better than any of the other three patients. A therapist was present to monitor how often the patients swallowed per bite. Dad had no problems.
He was completely alert and followed all conversation – only his bad hearing interfered. As part of therapy, the patients are left to feed themselves. Exercising motor control over muscles to feed themselves requires great concentration, and all ate very slowly. Dad had to be frequently prompted to take another bite, but he did eat his whole meal on his own.
On Friday December 18 at seven at night, David telephoned the room from home. Dad was awake and alert. Mom put Dad on the phone and he talked much as he might do before his stroke. I asked if he had had therapy that day, and he told me about walking more and spending time with hand activities. He told me he had talked to grandson Michael and that the latter was coping with 18 inches of new snow in Rochester, but that Michael would be planning to go to Tulsa soon for Christmas with his parents. Then Dad told me that the whole Tulsa crew would be coming at New Year’s to see Vanderbilt play the Music City Bowl. A very normal conversation for Pappaw. Grandchildren, children and in-laws, family gatherings and football.
I put Douglas’ mom, Mary Lee Murray, on the phone and the two chatted for several minutes, before getting back to David. We said our good-nights and hung up.
Dad does ask a lot of questions that suggest he’s getting his bearings after being asleep for a month. That may be how it feels to him. Last night at dinner he asked what city the hospital was in. Tonight, he asked me where I was. He is mentally re-building his sense of location, time and place.
DAD IS THRIVING!
Elizabeth made a trip from Memphis to Nashville this week to see Dad. She spent all of the afternoon of December 17 and all day on December 18 with Dad. She found him making remarkable headway with his rehab. The morning of the 17th the physical therapist reported he had walked for the first time since November 9 using a walking frame – 1000 paces! Elizabeth saw him using the walker on the 17th. With no active support from the therapists, he used the frame to walk some 500 paces down a long corridor to a physical therapy gym. At the end of the rehab session, he returned again under his own power. Dad grows more alert and for longer intervals. His doctors have been using Ritalin to stimulate parts of the brain that create focus. It has had a dramatic effect.
On December 17, Mother, Elizabeth, and David joined Dad as he ate his evening meal. When David arrived at five Dad was lying in bed in his sweatsuit (Razorback red pants with stripes). A nurse came in and directed Dad’s movements to manuveur himself off the bed and onto his feet so he could sit in a waiting wheelchair. Then the nurse wheeled him in to a therapy/exercise room that had large tables. He joined three other patients at those tables for his hot meal. He now gets solid food that is prepped only by pre-cutting it to bite size chunks. He ate as well or better than any of the other three patients. A therapist was present to monitor how often the patients swallowed per bite. Dad had no problems.
He was completely alert and followed all conversation – only his bad hearing interfered. As part of therapy, the patients are left to feed themselves. Exercising motor control over muscles to feed themselves requires great concentration, and all ate very slowly. Dad had to be frequently prompted to take another bite, but he did eat his whole meal on his own.
On Friday December 18 at seven at night, David telephoned the room from home. Dad was awake and alert. Mom put Dad on the phone and he talked much as he might do before his stroke. I asked if he had had therapy that day, and he told me about walking more and spending time with hand activities. He told me he had talked to grandson Michael and that the latter was coping with 18 inches of new snow in Rochester, but that Michael would be planning to go to Tulsa soon for Christmas with his parents. Then Dad told me that the whole Tulsa crew would be coming at New Year’s to see Vanderbilt play the Music City Bowl. A very normal conversation for Pappaw. Grandchildren, children and in-laws, family gatherings and football.
I put Douglas’ mom, Mary Lee Murray, on the phone and the two chatted for several minutes, before getting back to David. We said our good-nights and hung up.
Dad does ask a lot of questions that suggest he’s getting his bearings after being asleep for a month. That may be how it feels to him. Last night at dinner he asked what city the hospital was in. Tonight, he asked me where I was. He is mentally re-building his sense of location, time and place.
Wednesday, December 17, 2008
WEDNESDAY - 12/17
More news from David...
It’s Wednesday, December 17, 2008 at four o’clock Central time. I just got off the phone with Elizabeth, who is sitting with Dad in his room at the rehab hospital. She arrived this afternoon from Memphis. She spoke to Dad’s physical therapist who said that DAD WALKED ONE-THOUSAND FEET this morning. Apparently the Ritalin is doing its thing, because he has gotten focused in a big way in just three days since starting on it. Dad has three hours of non-stop therapy in the morning, which tires him out for the afternoon.
Dad’s memory seems to be good, even when he’s had a long day. Elizabeth said that on arriving this afternoon, she told Dad that Hampton’s Aunt Laura Beth had given him an Advent Calendar with pretty doors to open each day, showing a pretty new picture. Hampton rushed the season and opened all the doors. When he got to December 25 he deadpanned, “Ah, that baby Jesus. He’s such a cutie!” Dad enjoyed the joke and shortly afterword he fell asleep for awhile. When he woke up, he mentioned Hampton again, and said it looks like Hampton is a little rascal and always will be. So he clearly remembered what they had been discussing.
It’s Wednesday, December 17, 2008 at four o’clock Central time. I just got off the phone with Elizabeth, who is sitting with Dad in his room at the rehab hospital. She arrived this afternoon from Memphis. She spoke to Dad’s physical therapist who said that DAD WALKED ONE-THOUSAND FEET this morning. Apparently the Ritalin is doing its thing, because he has gotten focused in a big way in just three days since starting on it. Dad has three hours of non-stop therapy in the morning, which tires him out for the afternoon.
Dad’s memory seems to be good, even when he’s had a long day. Elizabeth said that on arriving this afternoon, she told Dad that Hampton’s Aunt Laura Beth had given him an Advent Calendar with pretty doors to open each day, showing a pretty new picture. Hampton rushed the season and opened all the doors. When he got to December 25 he deadpanned, “Ah, that baby Jesus. He’s such a cutie!” Dad enjoyed the joke and shortly afterword he fell asleep for awhile. When he woke up, he mentioned Hampton again, and said it looks like Hampton is a little rascal and always will be. So he clearly remembered what they had been discussing.
Tuesday, December 16, 2008
Update from David - December 15 & 16
Yesterday, December 15, I visited Dad at 3:00 pm and found him in bed in a darkened room. He was not wearing day clothes. After greeting me, he was soporific for the rest of the 40 minute visit. His nurse attended to an IV drip that she said was an antibiotic.
I asked how long Dad had been on Ritalin, and she said that she had started him on his first dose an hour before at 2:00 pm.
His daily schedule was posted and I saw that he has physical therapy non-stop from 9:30 am to 12:30 pm daily. The last hour is therapy during lunch. I thought maybe that was why he was so sleepy in the afternoon.
On December 16, I made a point of arriving in the morning, and found Dad at 10:00 am engaged in therapy. He was dressed in street clothes in a wheelchair and working in a large, specialized P.T. room down the hall from his room. There were four other patients and therapists also active in the room, so it was a hive of activity.
A speech therapist was with him and explained that they were discussing that Dad has had trouble sleeping soundly through the night because of noises and disruption on the floor. I asked him about his apnea machine and he said that he has been using it.
The speech therapist was succeeded by two physical therapists. They had Dad move himself, with their help, from the wheelchair over a board to an adjacent, raised, work-out mat. They encouraged him to keep himself sitting upright with his shoulders back and his head up. The lead therapist had him do an exercise with cards on a table before him numbered 1 to 12. She asked him to use his left arm to reach out to the cards and arrange them in numerical order. She had the table pushed away in such a way that Dad had to extend his arm fully to reach the most distant. He was able to do this task with help from the therapists pushing up from his elbow on the longest reaches.
The therapist then presented Dad with three colored buckets hanging on pegs on a stand that was arms-length from him. She asked him to name their colors and he did that immediately. She asked him to put the balls from the middle bucket into the uppermost bucket. He reached with his left arm and dragged it a foot closer! I guffawed, but she put it back and explained that reaching was part of the exercise.
I then left to keep an appointment. I returned at 2:30 pm to find Dad sitting in his room in his wheelchair. He still had his street shirt on although his legs were covered by a hospital gown. He remained alert and conversational during our visit, and he expressed interest in the day of the month, remarking that he supposed that it was the 15th. Close. It was the 16th.
I asked how long Dad had been on Ritalin, and she said that she had started him on his first dose an hour before at 2:00 pm.
His daily schedule was posted and I saw that he has physical therapy non-stop from 9:30 am to 12:30 pm daily. The last hour is therapy during lunch. I thought maybe that was why he was so sleepy in the afternoon.
On December 16, I made a point of arriving in the morning, and found Dad at 10:00 am engaged in therapy. He was dressed in street clothes in a wheelchair and working in a large, specialized P.T. room down the hall from his room. There were four other patients and therapists also active in the room, so it was a hive of activity.
A speech therapist was with him and explained that they were discussing that Dad has had trouble sleeping soundly through the night because of noises and disruption on the floor. I asked him about his apnea machine and he said that he has been using it.
The speech therapist was succeeded by two physical therapists. They had Dad move himself, with their help, from the wheelchair over a board to an adjacent, raised, work-out mat. They encouraged him to keep himself sitting upright with his shoulders back and his head up. The lead therapist had him do an exercise with cards on a table before him numbered 1 to 12. She asked him to use his left arm to reach out to the cards and arrange them in numerical order. She had the table pushed away in such a way that Dad had to extend his arm fully to reach the most distant. He was able to do this task with help from the therapists pushing up from his elbow on the longest reaches.
The therapist then presented Dad with three colored buckets hanging on pegs on a stand that was arms-length from him. She asked him to name their colors and he did that immediately. She asked him to put the balls from the middle bucket into the uppermost bucket. He reached with his left arm and dragged it a foot closer! I guffawed, but she put it back and explained that reaching was part of the exercise.
I then left to keep an appointment. I returned at 2:30 pm to find Dad sitting in his room in his wheelchair. He still had his street shirt on although his legs were covered by a hospital gown. He remained alert and conversational during our visit, and he expressed interest in the day of the month, remarking that he supposed that it was the 15th. Close. It was the 16th.
Monday, December 15, 2008
Report From David - Dad's 1st Week in Rehab
David visited Dad in his new room at Vanderbilt Rehab Hospital on Wednesday, December 10. He had been discharged the day before from the main hospital to the Rehab Hospital. This is his report...
I found Jim Miller, Cousin Frances Bartol Miller’s husband visiting with Dad. Jim, Frances and their six children live near Atlanta and Jim has always used every business trip to Nashville to visit with Dad and did not let this trip be an exception. Fortunately, he kept digging for a lead to Dad’s location when the main hospital desk said Dad had been discharged.
Attached are two photos of Dad. One shows Dad and Jim Miller together. The other shows Dad enjoying lunch and successfully manipulating his spoon to do it. During his fourth and final week in the medical hospital, Dad was restricted to pureed foods to reduce the chance that he will aspirate poorly chewed food. Now, the dietician and physical therapist have stepped him up to textured food.
He took the first two or three bites of food on his own and then became passive and still, so I took on the task of feeding him four bites of food and having him feed himself the fifth. Doing that, he cleaned his plate. It seems to me he chews very thoroughly and has normal swallowing reflexes, so surely they will let him have whole foods soon.
Dad was glad to see us both and enjoyed listening to our conversation. He continues to answer questions well after taking time to ponder. His nurse observes that he is able to do most one-step tasks, such as reaching for an object, but he has trouble thinking how to execute multi-step tasks. The stroke has affected his ability to think through how to execute steps two and three to reach a goal. Recovering those skills will also be a goal of rehab. Later in the visit he was drowsy and drifted off to sleep. I saw that he continues to sleep with the left eyelid slightly open.
By Friday the 12th, Mom had brought some easy-on clothes so that Dad can start wearing street clothes during the day. Putting them on each morning will be part of his rehab program. I understand from Mom that the staff put Dad in a wheelchair and took him to the Rehab hospital dining room for dinner on Thursday, so already he is starting to get with the program to become more mobile.
The picture of Dad dining also shows how clean and healthy the incision is at the back of his scalp where the neural fluid shunt was inserted.
Saturday, December 13, 2008
Saturday - 12/13
Dad got moved to Stallworth Rehab Center on Wednesday. He would've been moved on Tuesday, except his insurance company balked and said he should just be sent to a skilled nursing facility (a nursing home). Well - his neurologist, Dr. O'Duffy basically said there was no way she was going to let her good work go to waste, so she took care of that - and Dad got moved on Wednesday.
They started working him right away. One big point is that now he gets to wear pants. They told Mom to go and get him some stretchy pants. She asked Dad what he wanted. He said to get black and navy blue. Anyone out there who wants to send him a Razorback shirt - jump right in. If it's a sweatshirt, it'll be good therapy for him to have to get it on over his head.
They started working him right away. One big point is that now he gets to wear pants. They told Mom to go and get him some stretchy pants. She asked Dad what he wanted. He said to get black and navy blue. Anyone out there who wants to send him a Razorback shirt - jump right in. If it's a sweatshirt, it'll be good therapy for him to have to get it on over his head.
Matt got to come for a visit. Conveniently, he had business over in Jackson and, conveniently, there was a Vandy basketball game to see in Nashville. So there you are, knocked off several birds with that one stone.
On Thursday Dad spent his non-rehab workout time sitting upright in a wheelchair. At suppertime they took him to the common dining room. Mom wasn't sure how much he actually got to eat since he's still not fully feeding himself. But, I can only imagine Dad, looking forward to getting to know all those new people!
Monday, December 8, 2008
MONDAY - 12/8
The big news today...
David left me a voice mail. Dad's moving to rehab tomorrow. It's in a non-connected building about a block from the main hospital, so he'll have to be transferred by ambulance.
And, Laura Beth reports that yesterday Dad sang "Happy Birthday" to her. I'm sure she's never heard it sound more sweet.
David left me a voice mail. Dad's moving to rehab tomorrow. It's in a non-connected building about a block from the main hospital, so he'll have to be transferred by ambulance.
And, Laura Beth reports that yesterday Dad sang "Happy Birthday" to her. I'm sure she's never heard it sound more sweet.
Saturday, December 6, 2008
SATURDAY - 12/6
Mom called this morning and I could tell by her voice that she's not feeling nearly as distressed as yesterday, and for good reason.
Dr. O'Duffy, Dad's neurologist, came by today and said that the infections (apparently there are 2) are being treated with another round of antibiotics and that the fever and white cells are trending down. She said Dad's continued level of alertness and awareness are both signs that the infection is not currently compromising him neurologically, so that's good. And, she says she hopes they can get Dad over to the rehab center by next week.
Mom also mentioned that Dad had started coughing and then had put his left (that's his LEFT!) hand up to cover his mouth. She was obviously quite impressed. So much so that when Steve called she told him the same story. Dad heard her, though, and said, "What's the big deal?"
On the physical therapy front, they've been getting Dad up and standing, supporting his own weight, at least once each day for the last several days. Yesterday they had Dad stand from the bed, turn 90-degrees, and sit in a chair.
And, Mom said Dad made one of his word related puns today. In response to being asked if he was behaving, he responded that he was trying, but was having a hard time being "have." Pronounce that with a hard "a" and you'll get the joke. Amazing how you can groan and be impressed at the same time, isn't it?
Dr. O'Duffy, Dad's neurologist, came by today and said that the infections (apparently there are 2) are being treated with another round of antibiotics and that the fever and white cells are trending down. She said Dad's continued level of alertness and awareness are both signs that the infection is not currently compromising him neurologically, so that's good. And, she says she hopes they can get Dad over to the rehab center by next week.
Mom also mentioned that Dad had started coughing and then had put his left (that's his LEFT!) hand up to cover his mouth. She was obviously quite impressed. So much so that when Steve called she told him the same story. Dad heard her, though, and said, "What's the big deal?"
On the physical therapy front, they've been getting Dad up and standing, supporting his own weight, at least once each day for the last several days. Yesterday they had Dad stand from the bed, turn 90-degrees, and sit in a chair.
And, Mom said Dad made one of his word related puns today. In response to being asked if he was behaving, he responded that he was trying, but was having a hard time being "have." Pronounce that with a hard "a" and you'll get the joke. Amazing how you can groan and be impressed at the same time, isn't it?
FRIDAY - 12/5
My cellphone rang while I was getting ready for work and I didn't get it, deciding I would listen to the voice mail and return the call on my way to work. Unfortunately, I then walked out of the house without my phone and so didn't hear the message till I got home tonight.
It was David who had called. He said Mom had just called and let him know that while Dad continues to be awake and alert his fever is persisting. She'd just spoken with the neurosurgeon who had stressed that there's a danger of the infection getting into the shunt. It it does, it would mean Dad would have to go back to the ICU and possibly have a surgery to remove the shunt. Needless to say, Mom is quite distressed.
Mom had just been saying a couple of days ago that in addition to finally feeling better physically, she knows she's getting stronger each day emotionally because of the progress Dad is making. I know that days like this drain some of that energy, but I also know that it only takes one smile or "I love you" from him for her to get it back.
It was David who had called. He said Mom had just called and let him know that while Dad continues to be awake and alert his fever is persisting. She'd just spoken with the neurosurgeon who had stressed that there's a danger of the infection getting into the shunt. It it does, it would mean Dad would have to go back to the ICU and possibly have a surgery to remove the shunt. Needless to say, Mom is quite distressed.
Mom had just been saying a couple of days ago that in addition to finally feeling better physically, she knows she's getting stronger each day emotionally because of the progress Dad is making. I know that days like this drain some of that energy, but I also know that it only takes one smile or "I love you" from him for her to get it back.
Thursday, December 4, 2008
THURSDAY - 12/4
I called the hospital directly tonight. If you have the patient's medical records code you can get a progress. The nurse's station transferred me into Dad's room, since his nurse was in there at the time.
She said Dad has had a pretty good day, fairly alert. However, he has a fever again, currently 101+. They've started culturing everything again and are putting him back on antibiotics.
Then she said, "He's awake, I'm going to give him the phone." I could tell she'd handed it off, so I waited. And waited. After a few seconds I heard her tell Dad to put the phone to his ear. She told him a second time, and he said, "I got it."
Then I had a very nice chat with my Dad. I asked him if he was doing ok. His response was, "Well, we've got a difficult situation here, but we've just gotta deal with it."
We talked about the family birthdays this week and about how Mom is doing. And I told him that we all know how hard he's working and how great he's doing. There were lots of I-love-you's and several I-miss-you's. As further evidence that he was plugged-in during this conversation he asked me if I was in Carlisle. I told him I am, but I'm already planning my trip to come back in January. He said he's looking forward to it.
Me too, Dad. Me too.
She said Dad has had a pretty good day, fairly alert. However, he has a fever again, currently 101+. They've started culturing everything again and are putting him back on antibiotics.
Then she said, "He's awake, I'm going to give him the phone." I could tell she'd handed it off, so I waited. And waited. After a few seconds I heard her tell Dad to put the phone to his ear. She told him a second time, and he said, "I got it."
Then I had a very nice chat with my Dad. I asked him if he was doing ok. His response was, "Well, we've got a difficult situation here, but we've just gotta deal with it."
We talked about the family birthdays this week and about how Mom is doing. And I told him that we all know how hard he's working and how great he's doing. There were lots of I-love-you's and several I-miss-you's. As further evidence that he was plugged-in during this conversation he asked me if I was in Carlisle. I told him I am, but I'm already planning my trip to come back in January. He said he's looking forward to it.
Me too, Dad. Me too.
Wednesday, December 3, 2008
WEDNESDAY - 12/3
Three weeks ago tonight, my Dad joined in on the responses for his own Last Rites.
This morning I had a conversation with my Dad.
I called my Mom as I was on my way to work. She held the phone for Dad so I could say hello. He said hello to me, he asked me how I was. He told me (several times) that he loves me. I went to work crying and smiling.
This evening David called. He said he went by this afternoon and Dad was in an upright chair (they call it a Neuro Chair). Dad greeted David when he got there and was very awake and aware for the whole 20 minute visit. He participated in conversation, and when it lulled a bit he said, "So, today's Friday." David corrected him and said it's Wednesday, December 3rd, and there are a couple of birthdays in the family this week. Dad said, "Yes." David said that he knew that Pam's birthday is the 7th, but he couldn't remember which grandchild's birthday is also the 7th (sorry, Laura Beth). So, David asked if it would be Sarah's birthday and Dad replied, "No, not Sarah." David then consulted the calendar on his phone and acknowledged that it will be Laura Beth's day. Not too shabby.
Dad's taking all of his meds by mouth and they've removed the nasal tube.
Mom will be visiting Dad between 9 and 10 a.m. (Central) each morning if you want to call. He's in room 6013 and the phone number is 615-343-5062. Give him a ring - you know he loves to talk!
This morning I had a conversation with my Dad.
I called my Mom as I was on my way to work. She held the phone for Dad so I could say hello. He said hello to me, he asked me how I was. He told me (several times) that he loves me. I went to work crying and smiling.
This evening David called. He said he went by this afternoon and Dad was in an upright chair (they call it a Neuro Chair). Dad greeted David when he got there and was very awake and aware for the whole 20 minute visit. He participated in conversation, and when it lulled a bit he said, "So, today's Friday." David corrected him and said it's Wednesday, December 3rd, and there are a couple of birthdays in the family this week. Dad said, "Yes." David said that he knew that Pam's birthday is the 7th, but he couldn't remember which grandchild's birthday is also the 7th (sorry, Laura Beth). So, David asked if it would be Sarah's birthday and Dad replied, "No, not Sarah." David then consulted the calendar on his phone and acknowledged that it will be Laura Beth's day. Not too shabby.
Dad's taking all of his meds by mouth and they've removed the nasal tube.
Mom will be visiting Dad between 9 and 10 a.m. (Central) each morning if you want to call. He's in room 6013 and the phone number is 615-343-5062. Give him a ring - you know he loves to talk!
TUESDAY - 12/2
Back to work today. I stayed home yesterday to recover from whatever it was that decided to ravage my gastrointestinal system.
On my way there, Mom called to tell me she had really exciting news. Dad had just eaten scrambled eggs, sausage, and milk for breakfast! I guess he passed that swallowing study!
The next goal is to get Dad moved from step-down to the rehab center. For that to happen he's got to spend much more of the day awake and aware.
It was great to be able to spend my first day back with a smile on my face instead of being under a cloud of worry. Who knew I'd ever be this excited to know my Dad ate an egg?
On my way there, Mom called to tell me she had really exciting news. Dad had just eaten scrambled eggs, sausage, and milk for breakfast! I guess he passed that swallowing study!
The next goal is to get Dad moved from step-down to the rehab center. For that to happen he's got to spend much more of the day awake and aware.
It was great to be able to spend my first day back with a smile on my face instead of being under a cloud of worry. Who knew I'd ever be this excited to know my Dad ate an egg?
MONDAY - 12/1
I spoke to Mom around 1 this afternoon and asked when Dad will be moved. She said she asked the nurse that same question and got a shrug and an answer that these things happen on "hospital time." Coincidentally, Mom is at the house waiting for Sears to deliver her new washing machine. They just called to tell her they're running late and aren't really sure when they'll be there - in other words, they're on "Sears" time!
Amie posted the following on our Facebook -Lyle Family- Group Page after seeing Dad in his new room:
**I just saw Papa and he's in an upright "bed"! He's having trouble holding his head up but that's to be expected. He was awake and alert, and able to respond in conversation. His nurse told me they were taking him for a "swallowing study" this afternoon, where they'll videotape and track his ability to swallow without getting anything in his lungs. "Rehab/PT" is listed on his daily "goal" whiteboard, which is great! He's doing well and from what I saw, in reasonably good spirits.**
Phase 2 has finally begun.
Amie posted the following on our Facebook -Lyle Family- Group Page after seeing Dad in his new room:
**I just saw Papa and he's in an upright "bed"! He's having trouble holding his head up but that's to be expected. He was awake and alert, and able to respond in conversation. His nurse told me they were taking him for a "swallowing study" this afternoon, where they'll videotape and track his ability to swallow without getting anything in his lungs. "Rehab/PT" is listed on his daily "goal" whiteboard, which is great! He's doing well and from what I saw, in reasonably good spirits.**
Phase 2 has finally begun.
SUNDAY - 11/30
They're saying they'll transfer Dad tomorrow to the step-down unit. He's passed the fever/culture goals. Now - if he can just make it through till tomorrow without another infection popping up!
He was a little more awake today, Mom said. She's really hopeful about tomorrow.
I, probably from stress, spent all of last night being quite sick. Sarah dropped Samantha and Jackson off this morning so they can finish moving into the new house. I wish I could spend time with them, but it's really not a good idea - I don't feel like getting out of bed and there's always the chance I've got something they could catch. Not a good idea when she's got so much to do.
He was a little more awake today, Mom said. She's really hopeful about tomorrow.
I, probably from stress, spent all of last night being quite sick. Sarah dropped Samantha and Jackson off this morning so they can finish moving into the new house. I wish I could spend time with them, but it's really not a good idea - I don't feel like getting out of bed and there's always the chance I've got something they could catch. Not a good idea when she's got so much to do.
SATURDAY - 11/29
Up really, really early. AnneMarie's flight is at 6, so we're trying to get her to the airport by 5. We actually got there about 10 after, so not too bad. Twelve hours later we're back in Carlisle. I slept through most of the trip.
Mom said Dad had another drowsy day, but his fever is down and he's had another negative culture come back, which is a very good thing. One more negative culture, and one more day of no fever, and they should be able to kick him out of the ICU.
Mom said Dad had another drowsy day, but his fever is down and he's had another negative culture come back, which is a very good thing. One more negative culture, and one more day of no fever, and they should be able to kick him out of the ICU.
FRIDAY - 11/28
Mom says to go ahead and go back to Pennsylvania with Alex and Stuart tomorrow. I'm emotionally not ready to go, but I know I have to trust in her judgment.
We're at another low point - Dad's really drowsy, but he is a bit cooler today. That's a good thing.
There are a lot of things we're all trying to take care of for Mom before we leave, so we only spent a couple of hours at the hospital this morning. This evening AnneMarie and I came back over and just sat holding Dad's hands. I couldn't stop crying. I hate leaving before he's out of the ICU. I know he's in God's hands, and I know he has teams of angels working overtime.
It's going to be a long trip home.
We're at another low point - Dad's really drowsy, but he is a bit cooler today. That's a good thing.
There are a lot of things we're all trying to take care of for Mom before we leave, so we only spent a couple of hours at the hospital this morning. This evening AnneMarie and I came back over and just sat holding Dad's hands. I couldn't stop crying. I hate leaving before he's out of the ICU. I know he's in God's hands, and I know he has teams of angels working overtime.
It's going to be a long trip home.
Friday, November 28, 2008
THURSDAY - 11/27 - Thanksgiving
A very drowsy day for Dad. He's got a fever again and is obviously fatigued. The nurse said they've cultured everything possible, but it'll be a couple of days before they'll have those results. In the meantime they're giving him Tylenol.
Mom and I came over about 11:00. We got the Titans game on and when Alex and Stuart got there they stayed with Dad awhile.
AnneMarie and Etta flew in from Chicago and got here about 5. We had dinner when we got back to the house and then AnneMarie and I came over to the hospital. We had a nice chat with Dad's nurse, who was very sweet and came into the room to talk with Mom on the phone and give her an update on Dad.
It's really hard to see him on these drowsy days. But tomorrow brings more hope.
Wednesday, November 26, 2008
WEDNESDAY - 11/26
A good day!
On Monday the physical therapist showed us some arm and leg stretching exercises we can do with Dad. This afternoon I was getting him to raise his right arm, straighten it out at the elbow, pull it back in and then lay it back down. The more reps we did the more I felt his muscles participating as I guided him. Around the 8th rep he straightened his right arm out on his own and patted my left arm three times and then held it for a moment.
I cried.
Of course.
As we worked his left arm he was moving his thumb against my hand. Awesome!
I could tell he was trying to say something. His lips would move as he looked at me, but no sound was coming out and there just wasn't enough there for me to try to lip read. He replied with a head-shake "no" when I asked if he hurt anywhere, needed anything, wanted anything, etc. I really hate that I can't interpret what it is he is trying to say. He keeps clearing his throat, as if he's getting ready to say something, but nothing comes out.
Mom got here and I told her about Dad patting my arm. She was pretty excited. Then she leaned over, let Dad know she was here, and asked if he was ok. "Yeah." She told him she loved him. "I love you, too."
The good days are really good.
On Monday the physical therapist showed us some arm and leg stretching exercises we can do with Dad. This afternoon I was getting him to raise his right arm, straighten it out at the elbow, pull it back in and then lay it back down. The more reps we did the more I felt his muscles participating as I guided him. Around the 8th rep he straightened his right arm out on his own and patted my left arm three times and then held it for a moment.
I cried.
Of course.
As we worked his left arm he was moving his thumb against my hand. Awesome!
I could tell he was trying to say something. His lips would move as he looked at me, but no sound was coming out and there just wasn't enough there for me to try to lip read. He replied with a head-shake "no" when I asked if he hurt anywhere, needed anything, wanted anything, etc. I really hate that I can't interpret what it is he is trying to say. He keeps clearing his throat, as if he's getting ready to say something, but nothing comes out.
Mom got here and I told her about Dad patting my arm. She was pretty excited. Then she leaned over, let Dad know she was here, and asked if he was ok. "Yeah." She told him she loved him. "I love you, too."
The good days are really good.
Tuesday, November 25, 2008
Thank You - Vanderbilt Neuro ICU
The Lyle Family would like to thank this all too short list of the wonderful people who cared for Dad while he was in the Neurological ICU:
Victoria
Farrol
Jason
Tammy
Kelly
Jennifer
Lucy
Brandi
Leann
Rachael
Doctors:
Dr. O'Duffy
Dr. Smithson
Dr. Idowu
Dr. Wong
Dr. Barwise
Dr. James
I'm sorry I didn't get everyone's names - but we thank you all the same.
Without you, Dad wouldn't be over in Rehab now. There aren't words to express it - we can't thank you enough.
TUESDAY - 11/25
Dad had his surgery this morning to remove the EVD and put in a shunt. They brought him back to his room around 11:30 and the surgery nurse, as she was connecting him back to the monitor said, "These are textbook numbers. He really did great." The shunt is a tube that will drain excess spinal fluid from dad's head to his abdomen. It runs from the left side of his skull, under the skin, down his neck, along the left side of his chest, and into his abdomen. Any fluid that is deposited will be reabsorbed by his body.
After he came back to his room he woke up for very brief periods, but a few times he opened his eyes big and wide. When Dr. Kershner, his neurologist came into the room Dad answered the name question faintly but clearly, "Michael Charles Lyle." He was giving thumbs up, wiggling toes, and squeezing hands.
We were amazed that Dad was coming out of the anesthesia so soon; we really hadn't expected to see him waking up as much as we did. Within about fifteen minutes of getting to the room, though, he was pretty deeply asleep. Mom, Liz and I left around noon and agreed we needed to come back to the house and nap.
We went back in the late afternoon and Dad was still pretty sleepy. He did look right at Mom, though and nod his head.
He's had two days with no elevated temperature. They can stop the C-Diff precautions after two more negative cultures. He's on his way out of ICU - maybe by Friday.
After he came back to his room he woke up for very brief periods, but a few times he opened his eyes big and wide. When Dr. Kershner, his neurologist came into the room Dad answered the name question faintly but clearly, "Michael Charles Lyle." He was giving thumbs up, wiggling toes, and squeezing hands.
We were amazed that Dad was coming out of the anesthesia so soon; we really hadn't expected to see him waking up as much as we did. Within about fifteen minutes of getting to the room, though, he was pretty deeply asleep. Mom, Liz and I left around noon and agreed we needed to come back to the house and nap.
We went back in the late afternoon and Dad was still pretty sleepy. He did look right at Mom, though and nod his head.
He's had two days with no elevated temperature. They can stop the C-Diff precautions after two more negative cultures. He's on his way out of ICU - maybe by Friday.
Monday, November 24, 2008
MONDAY - 11/24 - ADDENDUM
Dad's shunt surgery is tomorrow morning. He's the first on the list - 7:30 a.m. Mom's getting up at 5 so she can be at the hospital by 6, so she can see him before he goes to surgery.
She told us she wants to go by herself.
She told us she wants to go by herself.
About My Mom
A lot of people have also been asking how Mom is. She has been handling all of this with her usual grace, strength, and faith.
I know it was awful for her to see Dad have that seizure. And I know she questioned whether the outcome would have been different if (a) they hadn't made the trip to Mena or, (b) she had known Sunday night that Dad was showing the first signs of the effect of the bleed. My non-medically-informed opinion is that the answer to both of those is NO. The traveling wouldn't have been a factor because he didn't show any signs at all until Sunday. His symptoms on Sunday could be attributed to any number of causes such as low blood sugar.
When Mom called the woman who helps out at their house to tell her about Dad she found out that a week earlier Dad just keeled over backwards and fell flat on the carpet in the hallway. He immediately said he was fine, got up and went to the kitchen and continued on about his day. I don't think knowing about it would've changed anything that's happened.
One of the doctors did say last week that it was unfortunate they couldn't do an MRI because of Dad's pacemaker. An MRI could reveal whether or not Dad had been having very small strokes over a period of time. In looking back, Mom does think he might have been. One of the residents asked some very detailed questions about the weeks leading up to this. Questions about his judgment and forgetfulness. There were actually a number of examples going back to mid-September.
The relief that I see on her face every time Dad looks at her and nods, or gives her a thumbs up, or squeezes her hand is truly priceless. All the tiny moments like blowing kisses or turning his head when he hears her voice are precious. And when I told her he asked, "Where's Mom?" or when she said "Hello sweetie pie," and he responded "Hi, babe," to her you just want to jump for joy, because these are the moments that continue to give her strength.
The love of her life is fighting for his life and still knows who she is. She has hope.
I know it was awful for her to see Dad have that seizure. And I know she questioned whether the outcome would have been different if (a) they hadn't made the trip to Mena or, (b) she had known Sunday night that Dad was showing the first signs of the effect of the bleed. My non-medically-informed opinion is that the answer to both of those is NO. The traveling wouldn't have been a factor because he didn't show any signs at all until Sunday. His symptoms on Sunday could be attributed to any number of causes such as low blood sugar.
When Mom called the woman who helps out at their house to tell her about Dad she found out that a week earlier Dad just keeled over backwards and fell flat on the carpet in the hallway. He immediately said he was fine, got up and went to the kitchen and continued on about his day. I don't think knowing about it would've changed anything that's happened.
One of the doctors did say last week that it was unfortunate they couldn't do an MRI because of Dad's pacemaker. An MRI could reveal whether or not Dad had been having very small strokes over a period of time. In looking back, Mom does think he might have been. One of the residents asked some very detailed questions about the weeks leading up to this. Questions about his judgment and forgetfulness. There were actually a number of examples going back to mid-September.
The relief that I see on her face every time Dad looks at her and nods, or gives her a thumbs up, or squeezes her hand is truly priceless. All the tiny moments like blowing kisses or turning his head when he hears her voice are precious. And when I told her he asked, "Where's Mom?" or when she said "Hello sweetie pie," and he responded "Hi, babe," to her you just want to jump for joy, because these are the moments that continue to give her strength.
The love of her life is fighting for his life and still knows who she is. She has hope.
MONDAY - 11/24
A.M. - He's having a good morning. His temperature is staying down, so they are still moving forward with the shunt surgery tomorrow.
Mom is out having a well-deserved hair and nail appointment for the first time in 3 weeks. She'll stop by her office after that to check on a couple of things. In the meantime, Liz and I are holding down the fort and making sure we remember everything we're told so we can relay the info to Mom.
Speech therapy came by and got him upright in the bed and had him eating ice chips, a cherry popsicle, and part of a cracker. He wasn't vocalizing all that much but the important thing is that he can swallow. Michelle, the therapist (who is a member of the Thursday morning Breakfast Club that Mom attends) said that they'll likely adjust the constant flow of the nasal-gastric feed to a bolus, or periodic feed with a push. When they do that his stomach will go from a constantly semi-full state to a more natural state of shrinking and re-filling. She also said that on Friday she'll have food brought in and if Dad does well with that then they can start sending trays at mealtimes.
Michelle asked Dad how many children he has. He held his right hand out, and then slowly curled his thumb back in, leaving his fingers extended. He does, in fact, have 4 children.
Then physical therapy came by and Dad gave them a thumbs up as they entered the room. They showed us some exercises they want us to do with his arms and legs. His joints are getting so stiff - this is a necessary precursor to actual rehab. They got him sitting up on the side of the bed and even got him to kick his left foot out several times.
Let me revise my earlier comment about Dad having a good morning. After all that I'd have to say he's had a great morning! All of his numbers look good - everything from blood pressure and heart rate to the cranial pressure. He's in a deep sleep now. Poor guy is tuckered out!
Sarah called to report it's also a good day at her house. This morning Jackson, my 21 month old grandson, said, "Bathroom, Mommy," and then went in and did some business. Good job, Jackson! He has a drive to do everything Samantha does, including wearing Pull-ups. Great!
Mom is out having a well-deserved hair and nail appointment for the first time in 3 weeks. She'll stop by her office after that to check on a couple of things. In the meantime, Liz and I are holding down the fort and making sure we remember everything we're told so we can relay the info to Mom.
Speech therapy came by and got him upright in the bed and had him eating ice chips, a cherry popsicle, and part of a cracker. He wasn't vocalizing all that much but the important thing is that he can swallow. Michelle, the therapist (who is a member of the Thursday morning Breakfast Club that Mom attends) said that they'll likely adjust the constant flow of the nasal-gastric feed to a bolus, or periodic feed with a push. When they do that his stomach will go from a constantly semi-full state to a more natural state of shrinking and re-filling. She also said that on Friday she'll have food brought in and if Dad does well with that then they can start sending trays at mealtimes.
Michelle asked Dad how many children he has. He held his right hand out, and then slowly curled his thumb back in, leaving his fingers extended. He does, in fact, have 4 children.
Then physical therapy came by and Dad gave them a thumbs up as they entered the room. They showed us some exercises they want us to do with his arms and legs. His joints are getting so stiff - this is a necessary precursor to actual rehab. They got him sitting up on the side of the bed and even got him to kick his left foot out several times.
Let me revise my earlier comment about Dad having a good morning. After all that I'd have to say he's had a great morning! All of his numbers look good - everything from blood pressure and heart rate to the cranial pressure. He's in a deep sleep now. Poor guy is tuckered out!
Sarah called to report it's also a good day at her house. This morning Jackson, my 21 month old grandson, said, "Bathroom, Mommy," and then went in and did some business. Good job, Jackson! He has a drive to do everything Samantha does, including wearing Pull-ups. Great!
Sunday, November 23, 2008
SUNDAY - 11/23
Today didn't really have any high points. Dad barely opened his eyes. He gave some thumbs-ups and plenty of hand squeezes and nods, but just never really woke up. The neuro attending, Dr. Kershner, ordered another CT, which was done around 4:00. We'll get a report on it in the morning. He wants to figure out the reason for the sleepiness. Is it fatigue or is it caused by the injury?
The man is battling 3 infections while trying to recover from a major brain injury. And he's 76 years old. Oh yeah - and he had seizure and a heart attack last week. On top of that he's had more IV's jabbed into him than I can count, a a femoral line, a subclavian line, and now a PICC line. He gets shaken and jostled every four hours and is asked to answer the same damn questions he's been asked for the last 14 days. He's being tube fed - the only food by mouth he's had in two weeks is half a cup of sherbet and about 4 spoons of vanilla ice cream. And there are machines beeping. And he's right across from the nurse's station (not exactly a quiet zone). And he has enough stuff firing inside that head of his to know that he's in the hospital, but can't ask the questions he must have.
I'd be pretty damn tired, too.
The man is battling 3 infections while trying to recover from a major brain injury. And he's 76 years old. Oh yeah - and he had seizure and a heart attack last week. On top of that he's had more IV's jabbed into him than I can count, a a femoral line, a subclavian line, and now a PICC line. He gets shaken and jostled every four hours and is asked to answer the same damn questions he's been asked for the last 14 days. He's being tube fed - the only food by mouth he's had in two weeks is half a cup of sherbet and about 4 spoons of vanilla ice cream. And there are machines beeping. And he's right across from the nurse's station (not exactly a quiet zone). And he has enough stuff firing inside that head of his to know that he's in the hospital, but can't ask the questions he must have.
I'd be pretty damn tired, too.
Saturday, November 22, 2008
SATURDAY - 11/22
Dad's new neurology attending is Dr. Kirshner. The new critical care attending is Dr. Barwise. Both seem wonderful.
Dr. Kirshner came by first. He says they're pretty pleased with how Dad's doing neurologically. He did say that we need to understand that Dad may have some personality changes as a result of this ordeal. I've been wondering about that, and worrying about how easily frustrated he can get sometimes and whether that will be exacerbated by this. No, apparently there's the distinct possibility that he will be, as Dr. Kirshner put it, "more passive and docile." Of course, we all responded quite favorably to that news. As an aside, I explained to Dr. Kirshner that while my Dad is a wonderful man and is truly loved by many - he's also been to anger management classes three times. Dr. Kershner just nodded.
Today's nurse went back over the C-Diff information with us and even said that we might be asked to wear gloves. This nurse is very good. I found out later that she actually teaches over at Belmont University in their nursing program. She's wonderful with Dad, always telling him directly what she's doing. When he's awake enough he nods.
Laura Beth came into town last night. Dr. Barwise was kind enough to give us an explanation of Thursday's CT and do a comparison to the ones from last week. He said that he'd heard that we'd been given a dismal prognosis last week and that the CT had been used to back it up. He also said he was very sorry that had happened, because from what he saw, and from what he'd read in Dad's chart, he had certainly been in grave condition, but no one should have been talking about pulling any plugs. Thankfully we already have adopted a "that was last week" point of view and have been moving forward. It also reinforces our happiness that Dr. V is not the one back on service for Dad's case this week.
After lunch Laura Beth came out and told us that she'd been talking the nurse who told her that Dad actually has 3 types of infection right now. There's the C-Diff. There's an interococcal infection, which is also digestive tract. And there is MRS-E. The next question we need an answer to is whether or not they'll be able to do Dad's shunt on Tuesday if these infections are not resolved.
Oh yeah - the BEST thing that happened today? Dad blew air kisses at Mom, and then turned to me and said, "Mary Carol." It was a good day.
Dr. Kirshner came by first. He says they're pretty pleased with how Dad's doing neurologically. He did say that we need to understand that Dad may have some personality changes as a result of this ordeal. I've been wondering about that, and worrying about how easily frustrated he can get sometimes and whether that will be exacerbated by this. No, apparently there's the distinct possibility that he will be, as Dr. Kirshner put it, "more passive and docile." Of course, we all responded quite favorably to that news. As an aside, I explained to Dr. Kirshner that while my Dad is a wonderful man and is truly loved by many - he's also been to anger management classes three times. Dr. Kershner just nodded.
Today's nurse went back over the C-Diff information with us and even said that we might be asked to wear gloves. This nurse is very good. I found out later that she actually teaches over at Belmont University in their nursing program. She's wonderful with Dad, always telling him directly what she's doing. When he's awake enough he nods.
Laura Beth came into town last night. Dr. Barwise was kind enough to give us an explanation of Thursday's CT and do a comparison to the ones from last week. He said that he'd heard that we'd been given a dismal prognosis last week and that the CT had been used to back it up. He also said he was very sorry that had happened, because from what he saw, and from what he'd read in Dad's chart, he had certainly been in grave condition, but no one should have been talking about pulling any plugs. Thankfully we already have adopted a "that was last week" point of view and have been moving forward. It also reinforces our happiness that Dr. V is not the one back on service for Dad's case this week.
After lunch Laura Beth came out and told us that she'd been talking the nurse who told her that Dad actually has 3 types of infection right now. There's the C-Diff. There's an interococcal infection, which is also digestive tract. And there is MRS-E. The next question we need an answer to is whether or not they'll be able to do Dad's shunt on Tuesday if these infections are not resolved.
Oh yeah - the BEST thing that happened today? Dad blew air kisses at Mom, and then turned to me and said, "Mary Carol." It was a good day.
FRIDAY – 11/21
FRIDAY – 11/21
A.M. – The word on Dad’s CT from Thursday is that it shows a slight decrease in the swelling and also shows that the bleed is smaller. The drainage fluid is not nearly as dark as it’s been in the last couple of days. He’s opening his eyes this morning, moving his head, and trying to talk. It’s really hard to hear him, but he’s certainly trying to let us know things.
After his respiratory session he was a bit subdued, but then he coughed a couple of times and really perked up. Whenever we’re holding his hands we ask him to squeeze and move his arms. He is definitely making an effort. I saw him looking at the Therabands tied to the sides of his bed, so I put them in his hands. Right away he started pulling against them, on the left side as well as the right. He obviously has the will to fight his way back.
NOON - Mom came and got me and said, "You've got to see what your Dad is doing!" I went to his room, and there he was, sitting on the side of the bed, holding a spoon and putting a bite of orange sherbet in his mouth. I was dumbstruck! There were three people from the physical/occupational therapy there with him. After a few spoonfuls of sherbet they put a cup of water in his right hand and only gently guided his elbow as he raised the cup to his mouth and took a sip of water. Someone asked him if it was good and he nodded. Someone else asked him his favorite flavor. Very clearly, he said, "Vanilla."
P.M. - The activity of the morning has pretty well tuckered Dad out. The nurse did come and put Dad's bed into a semi-chair position and get him to eat a few bites of vanilla ice cream. He ate about four bites but was obviously really tired out.
On the down side, Dad's running an elevated temperature again and we've been told he has a new infection called C-Diff, which is actually quite contagious. It's acquired as a result of having been on so many antibiotics for the past week; now all the good bacteria in his digestive tract has also been killed off. We've all been washing our hands when we enter his room, but we now also have to wash after we leave in order to prevent spreading to other people. He's officially in Isolation; any medical personnel who enter his room have to first put on a gown and gloves. A stethoscope is hanging next to his bed and everyone is using that one, rather than bringing their own in with them. Any machine that would normally be moved in and out of his room is now being left in there and will be disinfected later. They've started him on a medication that has a good success rate and they are giving him lactobacillus culture to restore his flora.
So, the question for today is, will they still do the shunt on Tuesday even if Dad continues to have this infection? We'll just have to stay tuned till tomorrow.
A.M. – The word on Dad’s CT from Thursday is that it shows a slight decrease in the swelling and also shows that the bleed is smaller. The drainage fluid is not nearly as dark as it’s been in the last couple of days. He’s opening his eyes this morning, moving his head, and trying to talk. It’s really hard to hear him, but he’s certainly trying to let us know things.
After his respiratory session he was a bit subdued, but then he coughed a couple of times and really perked up. Whenever we’re holding his hands we ask him to squeeze and move his arms. He is definitely making an effort. I saw him looking at the Therabands tied to the sides of his bed, so I put them in his hands. Right away he started pulling against them, on the left side as well as the right. He obviously has the will to fight his way back.
NOON - Mom came and got me and said, "You've got to see what your Dad is doing!" I went to his room, and there he was, sitting on the side of the bed, holding a spoon and putting a bite of orange sherbet in his mouth. I was dumbstruck! There were three people from the physical/occupational therapy there with him. After a few spoonfuls of sherbet they put a cup of water in his right hand and only gently guided his elbow as he raised the cup to his mouth and took a sip of water. Someone asked him if it was good and he nodded. Someone else asked him his favorite flavor. Very clearly, he said, "Vanilla."
P.M. - The activity of the morning has pretty well tuckered Dad out. The nurse did come and put Dad's bed into a semi-chair position and get him to eat a few bites of vanilla ice cream. He ate about four bites but was obviously really tired out.
On the down side, Dad's running an elevated temperature again and we've been told he has a new infection called C-Diff, which is actually quite contagious. It's acquired as a result of having been on so many antibiotics for the past week; now all the good bacteria in his digestive tract has also been killed off. We've all been washing our hands when we enter his room, but we now also have to wash after we leave in order to prevent spreading to other people. He's officially in Isolation; any medical personnel who enter his room have to first put on a gown and gloves. A stethoscope is hanging next to his bed and everyone is using that one, rather than bringing their own in with them. Any machine that would normally be moved in and out of his room is now being left in there and will be disinfected later. They've started him on a medication that has a good success rate and they are giving him lactobacillus culture to restore his flora.
So, the question for today is, will they still do the shunt on Tuesday even if Dad continues to have this infection? We'll just have to stay tuned till tomorrow.
THURSDAY - 11/20
THURSDAY – 11/20
Dad’s really sleepy this morning, not really waking at all. When we got here his nurse said that for today Dr. Smithson wants the lights on and for Dad to be stimulated throughout the day. His temp has been 98.6° since about 4a.m. It’s a relief to see him without the cooling blanket on.
After lunch – still asleep. Mom and I were in there when Physical Therapy came in. They worked his arms and legs for close to an hour and he never really woke up. They left some Therabands to use on another visit. Dr. Smithson came by around 2:15 and was talking about getting another CT. Dad coughed and opened his eyes as though to join in the conversation. It provided a moment of humor, but he drifted off quickly. Dr. Smithson then started doing all kinds of things to get Dad to wake back up. After about a half hour he said he might consider a stimulant, such as Ritalin, to get Dad a little more awake but definitely wants the CT first. He also tied one of the Therabands to Dad’s bed and told Dad he needs to pull on it to help his muscles. Dad’s sleepiness precluded any active participation, but at least they’re moving forward with the PT.
Whenever Dr. Smithson speaks with us he has a way of being very reassuring while covering all the issues that are at the top of the list right now. It’s so easy to sit here and just let the fear percolate. After hearing how Dr. Smithson explains it, I have a better sense of what to be afraid of today and what not to.
When Neuro came by the Attending was pretty adamant with Dad about raising his arms. He was shaking Dad aggressively and said, “Move your arms. Move your arms. If you move your arms I’ll stop.” Dad moved both arms. The doctor kept his word and stopped. David and I tried the same technique a couple of hours later. We didn’t get an arm raise, but it doesn’t mean we’re not going to try again!
They’ve scheduled Dad for surgery next Tuesday, the 25th to put in a shunt. They’ve tried numerous times to close the EVD but the pressure keeps building up. So, we know Dad’s in ICU at least till then.
Dad’s really sleepy this morning, not really waking at all. When we got here his nurse said that for today Dr. Smithson wants the lights on and for Dad to be stimulated throughout the day. His temp has been 98.6° since about 4a.m. It’s a relief to see him without the cooling blanket on.
After lunch – still asleep. Mom and I were in there when Physical Therapy came in. They worked his arms and legs for close to an hour and he never really woke up. They left some Therabands to use on another visit. Dr. Smithson came by around 2:15 and was talking about getting another CT. Dad coughed and opened his eyes as though to join in the conversation. It provided a moment of humor, but he drifted off quickly. Dr. Smithson then started doing all kinds of things to get Dad to wake back up. After about a half hour he said he might consider a stimulant, such as Ritalin, to get Dad a little more awake but definitely wants the CT first. He also tied one of the Therabands to Dad’s bed and told Dad he needs to pull on it to help his muscles. Dad’s sleepiness precluded any active participation, but at least they’re moving forward with the PT.
Whenever Dr. Smithson speaks with us he has a way of being very reassuring while covering all the issues that are at the top of the list right now. It’s so easy to sit here and just let the fear percolate. After hearing how Dr. Smithson explains it, I have a better sense of what to be afraid of today and what not to.
When Neuro came by the Attending was pretty adamant with Dad about raising his arms. He was shaking Dad aggressively and said, “Move your arms. Move your arms. If you move your arms I’ll stop.” Dad moved both arms. The doctor kept his word and stopped. David and I tried the same technique a couple of hours later. We didn’t get an arm raise, but it doesn’t mean we’re not going to try again!
They’ve scheduled Dad for surgery next Tuesday, the 25th to put in a shunt. They’ve tried numerous times to close the EVD but the pressure keeps building up. So, we know Dad’s in ICU at least till then.
WEDNESDAY - 11/19
WEDNESDAY – 11/19
This has been a day of crossed purposes. Dad was extremely sleepy this morning, and his breathing was very labored. He didn’t have the Bi-Pap on, and it turns out that despite the day nurse and night nurse’s best efforts, the respiratory therapist decided Dad didn’t need it. Which means he didn't rest well at all.
Dr. Smithson said that for today he’s to have the Bi-Pap on and is to rest for at least four hours. The neurologist came by and said he’d have Physical Therapy come, which they did, but Dad had only had about 2 hours of rest by then. The nurse thought the four hour criteria was satisfied by some combination of time that made no sense to us. Ultimately, what are you going to do?
They’re going to pull the subclavian central line because the infection is still present and they still don’t know the source. They’ll have a PICC line inserted instead. For overnight, Smithson is having them only do a neuro check every 4 hours instead of every hour. Maybe tonight Dad can actually rest.
This has been a day of crossed purposes. Dad was extremely sleepy this morning, and his breathing was very labored. He didn’t have the Bi-Pap on, and it turns out that despite the day nurse and night nurse’s best efforts, the respiratory therapist decided Dad didn’t need it. Which means he didn't rest well at all.
Dr. Smithson said that for today he’s to have the Bi-Pap on and is to rest for at least four hours. The neurologist came by and said he’d have Physical Therapy come, which they did, but Dad had only had about 2 hours of rest by then. The nurse thought the four hour criteria was satisfied by some combination of time that made no sense to us. Ultimately, what are you going to do?
They’re going to pull the subclavian central line because the infection is still present and they still don’t know the source. They’ll have a PICC line inserted instead. For overnight, Smithson is having them only do a neuro check every 4 hours instead of every hour. Maybe tonight Dad can actually rest.
TUESDAY - 11/18
TUESDAY – 11/18
A.M. – Dad is extubated! They have a small mask on just to provide a little air and are having the Bi-Pap brought in just in case he needs it tonight.
The EVD is open again. The fluid is still a little red, which means there’s still some bleeding. We don’t know yet when anything will change about that.
P.M. – Dad is awake and talking!! Once again, we heard “I love you.” It’s truly amazing. Dr. Smithson came by and held Dad’s hand, touched Dad’s face, and said, “My friend, very few people do what you have done. You’re doing great.” Then he turned to Mom and said he was truly impressed by how our family marshaled and focused all our energy on Dad. He made a reference to how much Big Pull we have with the Big Guy.
Mom and Elizabeth were both recognized by Dad. When I came in Liz asked Dad, "Do you know who this is?" He said, "Not really." I admit to being disappointed, but know that my time will come. I am focused on celebrating every victory. When Amie came in I asked, "Do you know who this is?" and Dad said, "Sure, it's Amie." And in true Dad form, when Amie told him she’d come back to see him in the morning, he said, “Approximately when?” That’s Dad. Gotta keep it all noted on the calendar.
Dr. Smithson wants Dad to get a lot of rest tonight, so he said he’s going to give him a little sedation, and he told the nurse to make sure the night team knows he’s supposed to have his Bi-Pap on all night.
A.M. – Dad is extubated! They have a small mask on just to provide a little air and are having the Bi-Pap brought in just in case he needs it tonight.
The EVD is open again. The fluid is still a little red, which means there’s still some bleeding. We don’t know yet when anything will change about that.
P.M. – Dad is awake and talking!! Once again, we heard “I love you.” It’s truly amazing. Dr. Smithson came by and held Dad’s hand, touched Dad’s face, and said, “My friend, very few people do what you have done. You’re doing great.” Then he turned to Mom and said he was truly impressed by how our family marshaled and focused all our energy on Dad. He made a reference to how much Big Pull we have with the Big Guy.
Mom and Elizabeth were both recognized by Dad. When I came in Liz asked Dad, "Do you know who this is?" He said, "Not really." I admit to being disappointed, but know that my time will come. I am focused on celebrating every victory. When Amie came in I asked, "Do you know who this is?" and Dad said, "Sure, it's Amie." And in true Dad form, when Amie told him she’d come back to see him in the morning, he said, “Approximately when?” That’s Dad. Gotta keep it all noted on the calendar.
Dr. Smithson wants Dad to get a lot of rest tonight, so he said he’s going to give him a little sedation, and he told the nurse to make sure the night team knows he’s supposed to have his Bi-Pap on all night.
Friday, November 21, 2008
MONDAY – 11/17
MONDAY – 11/17
Dr. Smithson still likes how Dad’s doing. And we, of course, are very happy that he’s still caring for Dad.
A Cardiologist came by today and said that Dad did have a very mild heart attack, which could account for all the difficulty with regulating his heart up to this point. They’re leaving the EVD open to keep the pressure down and put less strain on his heart.
Steve, Pam, Mike and Matt all left today. Liz and I will stay till Dad’s out of ICU. Steve said he’ll be back December 1, Liz will come the week after, and I’ll be back the week of the 15th. We don’t want Mom to be alone until she tells us she’s ready.
Dr. Smithson still likes how Dad’s doing. And we, of course, are very happy that he’s still caring for Dad.
A Cardiologist came by today and said that Dad did have a very mild heart attack, which could account for all the difficulty with regulating his heart up to this point. They’re leaving the EVD open to keep the pressure down and put less strain on his heart.
Steve, Pam, Mike and Matt all left today. Liz and I will stay till Dad’s out of ICU. Steve said he’ll be back December 1, Liz will come the week after, and I’ll be back the week of the 15th. We don’t want Mom to be alone until she tells us she’s ready.
SUNDAY – 11/16
God bless him. Dr. Smithson is using words like “happy” and “progress” and “getting better.” We like these words. It helps to know that changes in responsiveness between morning and evening are part of a wave – we keep reminding each other of that.
The infection is still present – they’ve got the cooling blankets on. They’re saying they know what the bacteria is and which antibiotic will take care of it, but they still don’t know the source.
We went to church and offered many, many prayers of thanksgiving. People are so kind; they want to know how Dad's doing, and they also ask how we're doing. Are we eating, sleeping, resting? I'm grateful that our responses to all questions is "Yes." We are blessed to have three immediate family households to offer beds, Mom and Dad's, Amie's, and David's. Being related to the person who's been in the shower before me is actually a comfort.
Laura Beth and Rick, and Caitlin and Tab all left today. I know it’s hard for them to leave while Dad is still in ICU, but we also know Dad (and Mom) are in for a long haul.
The infection is still present – they’ve got the cooling blankets on. They’re saying they know what the bacteria is and which antibiotic will take care of it, but they still don’t know the source.
We went to church and offered many, many prayers of thanksgiving. People are so kind; they want to know how Dad's doing, and they also ask how we're doing. Are we eating, sleeping, resting? I'm grateful that our responses to all questions is "Yes." We are blessed to have three immediate family households to offer beds, Mom and Dad's, Amie's, and David's. Being related to the person who's been in the shower before me is actually a comfort.
Laura Beth and Rick, and Caitlin and Tab all left today. I know it’s hard for them to leave while Dad is still in ICU, but we also know Dad (and Mom) are in for a long haul.
SATURDAY – 11/15
Dad has a different Critical Care Attending today – Dr. Smithson. He is a very tall, very kind man. The first thing he said was that he’d come by the evening before to check on Dad and had looked into the eyes of a man who wants to live. He also stressed that he’s providing medical/technical support, but healing comes from the family. He was pleased to hear from us that Dad is a man of great faith. He explained everything so well. Mom asked him if Laura Beth who is a 4th year med student could see the CT and he said he’d send someone by.
The day was like Friday – more aware and stronger in the morning, and then noticeable fading in the afternoon. We’re so on edge, the tension increases every time Dad doesn’t score 100% on his neuro quiz. Around 6:00, just as we were getting ready to leave, Dr. James came by and said he was there to go over the CT with Laura Beth. Dr. James did his residency in neurosurgery and has then been sub-specializing in aneurysms. He’s seen a number of cases similar to Dad’s.
We all gathered around and he pulled up Thursday’s scan, talked about the size of the bleed, pointed out where the swelling was. He said the bleed was not so extensive that it couldn’t be re-absorbed in maybe a month or so. He explained that the reason surgery to remove the bleed area shouldn’t be done is because you’d have to remove too much healthy tissue. He stressed that if you have to have a brain bleed, you want it in the right frontal lobe, because it significantly lessens the possibility of losing memory and other significant functions. Finally, Mom asked him to compare Thursday to Monday. When he did, he said they weren’t significantly different. He saw evidence of swelling on Monday that was only slightly more increased on Thursday.
One of the best things we heard from Dr. James is that the neuro recovery path is in waves – there will be ups and downs, and progressively the ups will increase. In other words, if Dad passes his 10 a.m. neuro quiz with flying colors but gives a significantly weaker response at 4 in the afternoon, don’t take it as a sign he’s turned for the worse. With regard to his neuro status, we have to look at this in larger increments. Good to know.
Alex and Stuart left this morning and thankfully made it home safe.
The day was like Friday – more aware and stronger in the morning, and then noticeable fading in the afternoon. We’re so on edge, the tension increases every time Dad doesn’t score 100% on his neuro quiz. Around 6:00, just as we were getting ready to leave, Dr. James came by and said he was there to go over the CT with Laura Beth. Dr. James did his residency in neurosurgery and has then been sub-specializing in aneurysms. He’s seen a number of cases similar to Dad’s.
We all gathered around and he pulled up Thursday’s scan, talked about the size of the bleed, pointed out where the swelling was. He said the bleed was not so extensive that it couldn’t be re-absorbed in maybe a month or so. He explained that the reason surgery to remove the bleed area shouldn’t be done is because you’d have to remove too much healthy tissue. He stressed that if you have to have a brain bleed, you want it in the right frontal lobe, because it significantly lessens the possibility of losing memory and other significant functions. Finally, Mom asked him to compare Thursday to Monday. When he did, he said they weren’t significantly different. He saw evidence of swelling on Monday that was only slightly more increased on Thursday.
One of the best things we heard from Dr. James is that the neuro recovery path is in waves – there will be ups and downs, and progressively the ups will increase. In other words, if Dad passes his 10 a.m. neuro quiz with flying colors but gives a significantly weaker response at 4 in the afternoon, don’t take it as a sign he’s turned for the worse. With regard to his neuro status, we have to look at this in larger increments. Good to know.
Alex and Stuart left this morning and thankfully made it home safe.
FRIDAY – 11/14
Dad is awake again! Dr. V said, "I guess miracles do happen." You bet, buddy!
Dad does have a fever, so they’re taking cultures to find out what the infection is. In the meantime they have him on a broad-spectrum antibiotic. Once the culture comes back they’ll know exactly which antibiotic to use. They’ve also got to identify the source of the infection. With all the IV’s he’s had and now the drain, it could be almost anything. He has a lot of chest congestion, so there’s always the possibility that it’s pneumonia.
In the afternoon he became quite a bit less responsive. Dr. Rachel has come by a couple of times and keeps telling us she is encouraged, so I try to listen to her and not my fear.
We’re looking forward to tomorrow.
Dad does have a fever, so they’re taking cultures to find out what the infection is. In the meantime they have him on a broad-spectrum antibiotic. Once the culture comes back they’ll know exactly which antibiotic to use. They’ve also got to identify the source of the infection. With all the IV’s he’s had and now the drain, it could be almost anything. He has a lot of chest congestion, so there’s always the possibility that it’s pneumonia.
In the afternoon he became quite a bit less responsive. Dr. Rachel has come by a couple of times and keeps telling us she is encouraged, so I try to listen to her and not my fear.
We’re looking forward to tomorrow.
THURSDAY – 11/13
I stayed at the hospital till after Stuart, Sarah, and the babies got here and then went to Amie’s to sleep. When we got back I found out Dad had become totally non-responsive and had been intubated prior to having a drain put in to try and relieve the pressure from the spinal fluid.
The most important thing is that he’s still alive, still fighting, and still has a chance. We haven't given up on him and neither have his caregivers. Dr. Serafin, Dr. O'Duffy, and Dr. Rachel have ensured that Dad will have every possible chance to get through this.
The most important thing is that he’s still alive, still fighting, and still has a chance. We haven't given up on him and neither have his caregivers. Dr. Serafin, Dr. O'Duffy, and Dr. Rachel have ensured that Dad will have every possible chance to get through this.
WEDNESDAY -11/12 – aka “DIEM HORRIBILIS”
when we got here Dad was on a Bi-Pap, which is the hospital’s version of C-Pap ,and was not opening his eyes at all. There were longer periods between when you could get any answer out of him.
Just after the neurologist, Dr. O’Duffy came by Dad had some sort of cardiac “episode” and we had to leave the room. When they let us come back Dad was even less responsive and I noticed they weren’t as concerned about enforcing the 2 visitor limit.
Around mid-day we were called in to a Family Consult Room. Dr. V, Dr. Rachel, and Dad’s nurse were there. Dr. V referred to a specific clause in the Living Will that basically said that if his attending physician saw no possibility of an outcome that would be “favorable” then artificial interventions were to be withdrawn. He went on to say that two neurosurgeons had reviewed Dad’s case and said that surgery wasn’t an option, and since Dad couldn’t have surgery the pressure was going to build and his breathing would be compromised, and because of the weak condition of his heart they wouldn’t be able to do anything that wouldn’t probably kill him. He was saying that no matter what, Dad was going to die. Then he showed us the CT scan from Monday and pointed out why this was a hopeless situation.
Afterward we called all the grandchildren to let them know to come and see their Pa-pa while there was the chance he’d be able to say “I love you,” to them. We called scores of other people to get more prayers in the pipeline. And we refused to give up. Mom called Dr. Serafin’s office (Dad’s primary care physician), and he said he’d come by on Thursday morning.
Just before we left for dinner we were told that someone had ordered another CT. After we came back a Resident came by and said that the opinion regarding surgery had not changed, and he would make arrangements for a palliative care team to come by the next day to speak to us. It was really late and Mom needed to rest, but she didn’t want to leave Dad. I decided I would stay since I knew I wouldn’t sleep anyway, and Judy stayed with me.
Throughout the night Dad would be awake enough every couple of minutes to get one response out of him. Even with the Bi-Pap his breathing was very labored.
I had a very hard time getting my head to accept how close Dad was to death - never mind my heart. He was still aware of our presence; how could it be that we were being told to let him go?
Just after the neurologist, Dr. O’Duffy came by Dad had some sort of cardiac “episode” and we had to leave the room. When they let us come back Dad was even less responsive and I noticed they weren’t as concerned about enforcing the 2 visitor limit.
Around mid-day we were called in to a Family Consult Room. Dr. V, Dr. Rachel, and Dad’s nurse were there. Dr. V referred to a specific clause in the Living Will that basically said that if his attending physician saw no possibility of an outcome that would be “favorable” then artificial interventions were to be withdrawn. He went on to say that two neurosurgeons had reviewed Dad’s case and said that surgery wasn’t an option, and since Dad couldn’t have surgery the pressure was going to build and his breathing would be compromised, and because of the weak condition of his heart they wouldn’t be able to do anything that wouldn’t probably kill him. He was saying that no matter what, Dad was going to die. Then he showed us the CT scan from Monday and pointed out why this was a hopeless situation.
Afterward we called all the grandchildren to let them know to come and see their Pa-pa while there was the chance he’d be able to say “I love you,” to them. We called scores of other people to get more prayers in the pipeline. And we refused to give up. Mom called Dr. Serafin’s office (Dad’s primary care physician), and he said he’d come by on Thursday morning.
Just before we left for dinner we were told that someone had ordered another CT. After we came back a Resident came by and said that the opinion regarding surgery had not changed, and he would make arrangements for a palliative care team to come by the next day to speak to us. It was really late and Mom needed to rest, but she didn’t want to leave Dad. I decided I would stay since I knew I wouldn’t sleep anyway, and Judy stayed with me.
Throughout the night Dad would be awake enough every couple of minutes to get one response out of him. Even with the Bi-Pap his breathing was very labored.
I had a very hard time getting my head to accept how close Dad was to death - never mind my heart. He was still aware of our presence; how could it be that we were being told to let him go?
TUESDAY - 11/11
TUESDAY – Dad wasn’t opening his eyes much, but when you’d talk to him he’d squeeze your hand, and say “I love you.” His speech was slow, but he knew when he was slurred and would and repeat himself very deliberately. When anyone would come to do a neuro assessment, they’d ask his name, the year, if he knew where he was, who’s the president, etc. Pretty much throughout the day he gave an acceptable response to each question. He always got his name right. When he said Obama was the president they didn’t argue with him.
He was significantly weaker on the left side, but would still move his hand and toes upon request. Occasionally he’d open his eyes and focus for a moment on whoever was there and give your hand a squeeze. And we knew he didn’t like the light in his eyes because he kept clicking the remote to turn it off.
Before Alex and I got here on Tuesday the attending neurologist, Dr. O’Duffy had already been by to see Dad and said they’d done a CT scan on Monday, and we were in a wait-and-see phase. They didn’t know if the bleeding had stopped – and they were waiting to see if swelling started. She said we had to wait for the Coumadin (blood thinner) to leave Dad’s system before any surgery could be done, and that would take at least another day.
After we got here the Critical Care Team came by. The Attending was Dr. V. He pretty much said the same things – we won’t know more till we have more to know. In other words, we’re just waiting to see what happens here. There was some discussion about looking over Dad’s daily meds, and whether or not he should be on his C-Pap for his sleep apnea. Victoria, the nurse, asked about a Living Will and Durable Power of Attorney and Mom said she’d bring them in later. Mom and I drove lout to the house to take a short nap and pick everything up.
When we got back to the hospital we started going through the meds. As we read out doctor’s names it was clear Dad was aware and responsive.
“Dad, who’s Dr. X?”
“My Cardiologist.”
“Who’s Dr. Y?”
“My Urologist.”
“Who’s Dr. Z?”
“My Gynecologist.”
“Dad, who’s Dr. Z?”
“My Orthopedist.”
(Our cousin Joe, is an OB-Gyn. When I shared this story with him, he said to tell Dad he always thought he was Dad’s gynecologist!)
In the afternoon, Mom was trying to figure out who else she needed to call. I asked about their friends, Bob & Joan Smartt, but Mom said she didn’t have their number. From his bed, eyes closed, Dad said, “I have it.” I asked, “in your cell phone?” “Yes,” he said. With the exception of the whole lying in bed with his eyes closed and tubes all over the place – this was Dad across the room during any other conversation you might be having, interjecting when he feels necessary.
By evening he was a little less responsive. He said the year was 1908, then 1988, then 1980. He started saying he was at home – but I really think that’s because so much family was around him, of course he was at home! But he was barely opening his eyes and he really had to be prodded to move anything on his left side.
A technician came by to do an echocardiogram and then Dr. V (Critical Care) came by with his team. As he stood outside Dad’s room each of us positioned ourselves to hear as much as we could of his commentary. I heard him saying that (a) Dad’s heart was too weak to survive any surgery and (b) there was no point in doing an echocardiogram because it was information that couldn’t be used. An impressive young ICU Fellow, Dr. Rachel, spoke up and asked how you knew you couldn’t use a piece of information until you had it. He said it was useless because of the known condition of Dad’s heart. She said – basically – that she disagreed.
Then they moved into Dad’s room. As he stood by my Dad’s bedside, Dr. V continued to paint his bleak picture. A discussion ensued about the value of adding Dad’s regular, daily meds to his hospital med program. Dr. Rachel was all for it. Dr. V mentioned using Digoxin. Dr. Rachel wanted to call Dad’s primary care physician to find out why he was on something other than Digoxin. Dr. V. said “give him the Digoxin and that can be your experiment for the day.”
We did dinner in shifts and before we left for the evening we talked to the night nurse about using the C-Pap. He said since Dad had gotten through Monday evening without breathing support he thought he’d be fine.
He was significantly weaker on the left side, but would still move his hand and toes upon request. Occasionally he’d open his eyes and focus for a moment on whoever was there and give your hand a squeeze. And we knew he didn’t like the light in his eyes because he kept clicking the remote to turn it off.
Before Alex and I got here on Tuesday the attending neurologist, Dr. O’Duffy had already been by to see Dad and said they’d done a CT scan on Monday, and we were in a wait-and-see phase. They didn’t know if the bleeding had stopped – and they were waiting to see if swelling started. She said we had to wait for the Coumadin (blood thinner) to leave Dad’s system before any surgery could be done, and that would take at least another day.
After we got here the Critical Care Team came by. The Attending was Dr. V. He pretty much said the same things – we won’t know more till we have more to know. In other words, we’re just waiting to see what happens here. There was some discussion about looking over Dad’s daily meds, and whether or not he should be on his C-Pap for his sleep apnea. Victoria, the nurse, asked about a Living Will and Durable Power of Attorney and Mom said she’d bring them in later. Mom and I drove lout to the house to take a short nap and pick everything up.
When we got back to the hospital we started going through the meds. As we read out doctor’s names it was clear Dad was aware and responsive.
“Dad, who’s Dr. X?”
“My Cardiologist.”
“Who’s Dr. Y?”
“My Urologist.”
“Who’s Dr. Z?”
“My Gynecologist.”
“Dad, who’s Dr. Z?”
“My Orthopedist.”
(Our cousin Joe, is an OB-Gyn. When I shared this story with him, he said to tell Dad he always thought he was Dad’s gynecologist!)
In the afternoon, Mom was trying to figure out who else she needed to call. I asked about their friends, Bob & Joan Smartt, but Mom said she didn’t have their number. From his bed, eyes closed, Dad said, “I have it.” I asked, “in your cell phone?” “Yes,” he said. With the exception of the whole lying in bed with his eyes closed and tubes all over the place – this was Dad across the room during any other conversation you might be having, interjecting when he feels necessary.
By evening he was a little less responsive. He said the year was 1908, then 1988, then 1980. He started saying he was at home – but I really think that’s because so much family was around him, of course he was at home! But he was barely opening his eyes and he really had to be prodded to move anything on his left side.
A technician came by to do an echocardiogram and then Dr. V (Critical Care) came by with his team. As he stood outside Dad’s room each of us positioned ourselves to hear as much as we could of his commentary. I heard him saying that (a) Dad’s heart was too weak to survive any surgery and (b) there was no point in doing an echocardiogram because it was information that couldn’t be used. An impressive young ICU Fellow, Dr. Rachel, spoke up and asked how you knew you couldn’t use a piece of information until you had it. He said it was useless because of the known condition of Dad’s heart. She said – basically – that she disagreed.
Then they moved into Dad’s room. As he stood by my Dad’s bedside, Dr. V continued to paint his bleak picture. A discussion ensued about the value of adding Dad’s regular, daily meds to his hospital med program. Dr. Rachel was all for it. Dr. V mentioned using Digoxin. Dr. Rachel wanted to call Dad’s primary care physician to find out why he was on something other than Digoxin. Dr. V. said “give him the Digoxin and that can be your experiment for the day.”
We did dinner in shifts and before we left for the evening we talked to the night nurse about using the C-Pap. He said since Dad had gotten through Monday evening without breathing support he thought he’d be fine.
The Backstory
On Thursday, November 6, Dad was supposed to meet Mom downtown at 2pm to leave for Mena, Arkansas, for his sister MaryJane’s 90th birthday party. He called to tell Mom he was running late, and that he would explain later. When he did arrive he said he’d stumbled on the basement stairs while trying to set the alarm, fell down the stairs, hitt the back of his head and scraped his arm. He insisted he only had a little headache he felt fine and was ready to head for Mena.
Mom says he seemed fine Friday and Saturday, and it was only when they were heading back Sunday that she started noticing anything. He was sleeping (not unusual), but was also a little more slumped in the seat than normal. The most significant thing was that once they got back to town and went to pick up his car he pulled out of the parking garage, sat through a couple of cycles of the light, and then made a series of left turns which resulted in going the wrong way on a one-way street. Mom was right behind him and called his phone, told him to pull over, and then drove him home. Even then he was insisting he was just needing to eat, and was fine. They went home, had some dinner, and he went to bed.
Monday morning she found him sitting propped up next to the bed. She asked him why he was there and he said he was transitioning from the bed to the bathroom. When she suggested he go ahead and get up off the floor, he couldn’t. At that point she called 911, and they brought Dad to Vanderbilt.
Very shortly after getting to the ER, before either Amie or David could meet up with her, Dad had a seizure, and when he came to his speech was difficult and he was very weak on his left side. Dad’s on Coumadin to thin his blood; after his fall he’d started a slow bleed that had grown large enough by Sunday to induce symptoms. They did a CT scan to see how large the bleed was at that point. Mom asked two doctors if she should call the children and both said she should. Thus began the first of many rounds of phone calls. David was already with Mom, Liz drove in from Memphis and Steve flew in from Tulsa on Monday night. Alex and I left Carlisle about 8pm Monday & got to the hospital around 9am Tuesday.
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