Friday, November 28, 2008
THURSDAY - 11/27 - Thanksgiving
Wednesday, November 26, 2008
WEDNESDAY - 11/26
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
TUESDAY - 11/25
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
She told us she wants to go by herself.
About My Mom
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
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
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
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
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
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
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
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
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
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
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 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
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”
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
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.