Hopeful but not optimistic

Its been a rough day. The nurse I dealt with tonight was down right rude. She answered one of my questions with "oh my god..." and then complained I was keeping her from actually caring for my father (I told her if it wasn't a good time I would gladly call her back, she demurred). I was infuriated with her and complained to the social worker, not only about the nurse but about the failure of any doctor on the VAD team to call me since I left L.A. Be careful what you wish for.

Dad's surgeon called me a couple hours later. Dad's alertness has improved, but the problems are the liver and the fact that he's still on a ventilator. The ventilator weaning has not gone so well. He can do it for a while but then he gets tired and begins to hyperventilate. So they think they want to do a tracheostomy which is essentially a direct connection to the windpipe. The lets them take the tube out of his mouth but still lets him be on a ventilator. Its a longer term solution, but when its no longer needed its capped and then it heals. Its medically cleaner, but doesn't actually allow him any more communication ability than he has now. The liver has plateaued this makes them nervous. In fact in general the doctor feels like he's plateaued. The doctor said, if he was asked if dad would be better in a week or worse in a week he'd expect worse. The problem seems to be the longer he's in the bed the weaker he gets, so plateauing is actually a form of declining.

The title of this post comes from the doctors words, he said "I'm hopeful but not optimistic." He asked when I was coming out next, and I said Oct 13. He recommended I come out sooner. So I'm changing my flight to next weekend. It will be fewer days in L.A. because I don't have Fall Break to play with, and the flight is early morning, but it does give me two working days there: Friday and Monday to interface with the doctors.

It depends on who you ask

Yesterday I got a call from the CICU doctor who I have been dealing with since dad went in. He's not part of the surgery team, he's one of the floor doctors. He delivered a fairly grim assessment of what was going on with dad. Dad's responsiveness really reach its high point in the middle of last week. Since then, he said, his alertness has been going down hill. The doctor remains mystified by this. At the same time the liver and kidneys are not improving. He recommended I fly out and see for myself, but felt like sooner or later difficult decisions would need to be made. I was fairly discouraged by this conversation, as you might expect. Couple this with repeated failures to reach dad's nurse (I seemed to have a knack for calling when they were on a break, or in the middle of something) and I was unclear. I talked to a friend of dad's this morning who has been going to see him fairly often recently, and told her the doctor seemed to think he was slipping back into the coma. She said she would go this afternoon and report what she saw.

But then I got through to the nurse this afternoon. Dad's doing pretty well. He's been breathing on his own (with the tube still in place) for about 5 hours. He opens his eyes, squeezes hands, generally responds. It is true that the liver and kidney seemed to have plateaued and they are looking into this, but there has been no decline there. This seemed an entirely more upbeat and positive assessment than what I got from the doctor. In fact they have scheduled dad to begin physical therapy and occupation therapy, another positive sign. I have a plan to get out there in a couple of weeks and here in lies the problem of dealing with things from across the country. I don't have the first hand sense that comes with seeing him myself. I think I want to leave a tablet with skype on it there, so that they can show me dad and maybe I can get a better sense.

Up the hill

I haven't posted in a couple of days because things have been pretty stable, but I thought I'd do an update just to let folks know where we are. In terms of consciousness: dad had a friend there last night who said he was able to squeeze her hand, opened his eyes and nod in answer to questions. The nurse tells me that Dad continues to obey requests that they make. They have him on a little bit of sedative because the ventilator makes him anxious. In terms of the ventilator he continues on it. Yesterday they turned off the breathing function to allow him to breath on his own. After about three hours he got a little anxious and started to hyperventilate so they turned the machine back on. The nurse explained to me that he needs to be able to breathe on his own for about 10 hours. Once he can do that, they will test his blood and make sure that it has the proper levels and THEN they will actually remove the tube. The nurse said they will try the test breathing again today and see how he does.  Kidney's continue to produce only minimal urine, though he is still on dialysis. Its unclear to me about the prognosis of the kidneys, and whether dialysis will need to be a continual part of his recovery or not. I think at this point we simply don't know. His liver, however, does seem to be improving. The numbers from that are coming down (good) and his color is improving. A fact remarked on by several people. So it steady as he goes, with most things moving in the right direction and nothing really going backwards at this point. The removal of the RVAD has been pretty much a success and his blood pressure remains good. They have started weaning his heart medication getting to a little more than half of what he was on right after the surgery.

I have booked a flight to go out over fall break Oct 13-17 so I will head out there and see dad and talk to the doctors.

1 out

So the RVAD is out and dad is doing ok. Liver and Kidney problems persist, but the removal of the RVAD was a potential show stopper. The reason they put it in to begin with was that his heart's right side was not able to pump on its own. It is now able to do it. He still has some medicine that's increasing its efficiency. But last time they were not able to even get that to work. So this is good news.

Trial Run

Dad continues to become more alert. But today is a big day. Today they will try to take the RVAD out (the official term is explant -- the opposite of implant). They say that this is in some ways just a trial. They are going to try to take it out. If he does well it stays out. If he has trouble, they put it back in and let it cook a while longer. At this point, however, they believe the right side of the heart has a good chance of being able to hold up on its own. They apparently played some with the pressures reducing the amount of pumping that the right VAD was doing, and the heart was able to pick up the slack. This gives them some confidence that it will be able to do things on its own. The RVAD is a BTR (Bridge to Recovery) meaning it can't stay in forever so now they feel like they have had sufficient time for it to do its thing. I think with dad's increasing alertness they feel like the big concern, that he was gone for good, has passed and they want get the RVAD out so he can start physical therapy with LVAD (which is portable -- the RVAD is not). He's been laying in a hospital bed for almost a month now which is not good for any one.

The operation started today at 7am (PST), they told me to call about 9am and get an update. I will update the blog as I hear things

Be Alert, we need more lerts!

So dad seems to be moving toward greater and greater alertness. He apparently opens his eyes and will nod his head to answer questions. He is probably not technically awake. The Glasgow Coma Scale has three categories. Opening eyes, verbal response, and motor responses. This weekend, he scored a 1 in the first two categories and a 4 in motor skills. This put him at 6 which is considered a severe coma. Yesterday, however, he scored a 3 in opening eyes, a 1 in verbal response (which is the case for anyone on a respirator) and a 4 in motor skills, This gives him a 8 on the scale. This actually puts him on the lower end of a moderate coma. While comas are probably not good, the reason I use this scale is because it is one way of charting dad's progress. Essentially, he was back to where he was shortly after the surgery. The first day after the surgery we saw him at this level. Then his kidney's failed to work properly and we moved down the scale. Hopefully, we will continue to move up the scale and eventually leave the coma state. At this point the numbers are more optimistic then they have been since Sept 7.

Update: I just talked to the nurse again this afternoon. It seems that dad will now squeeze a hand on command. This moves his GCS (motor skills) up to 6, which gives him a total of 10  which still puts him in the moderate coma phase. They tell me kidneys are not producing much urine and liver numbers continue to rise slowly which is not good. They are tentatively talking about taking the RVAD out on Friday. I'm waiting for a call from the doctor and will get a sense of what's going on then.

The ferris wheel moves back up

If you have been reading this blog, you know that I have been quite down about dad's condition. The focus has really been on dad's responsiveness and it has basically plateaued for the past couple of days. Today however, I got a hint of good news. The nurse said tonight that when she called his name he opened his eyes. He is still not responding to commands, squeezing hands or the like, but this is the first positive step he has taken towards greater responsiveness in a while. On the downside, they have put him back on dialysis as his kidney numbers have significantly declined. Renal failure is still a real possibility and that would be a problem as well. Still, I cannot help but be encouraged by what I've heard today.

Same story

So dad's condition is pretty much unchanged from yesterday. I talked to the doctor last night. He worried that Dad has failed to wake up because he's lost higher cognitive abilities. This is the worst case scenario -- dad's body continues to improve but his mind is gone. At this point that have no real physical concerns. He is doing well on the VADs, the kidney's are working, the liver is behaving acceptably. But he's not awake. A 24 hr EEG, showed nothing that the 20 min EEG didn't. There's no sign of seizures, but to get a real picture of what is firing in his brain they need an MRI which they can't do with the equipment that he has. So at this point we only have indirect evidence which is his responsiveness which is unchanged over the past couple of days. The result of this is that the doctors have no answers. They don't seem to understand why he won't wake up and can do nothing besides care for his body. While I talked to the nurses everyday, I will talk to the doctor again early next week. They fear he has lost higher cognitive functions and my choices are to allow him to remain in the state that he is in, or withdraw medical support.  But there is no clarity in any of that. For now, we wait, we watch, we hope we see.

Steady as she goes

Dads state is not much different today. He is still off dialysis, but his creatinine and BUN numbers are rising. At this point they are close to pre surgery levels and he is making sufficient urine that they are not inclined to restart dialysis. Apparently they are going to do another EEG. This one over a 24 hr period. However what the nurse is unable to tell me is what they will learn from this that they were unable to learn last week. The best she could do is tell me this one was longer (this one goes to 11), but beyond that not much. So I'm escalating trying to get more information. While the nurses are helpful in giving me he daily numbers and procedures they don't seem to have a very long term view or even a medium term view. My email to he VAD coordinator has not been returned. One of the doctors, however made the mistake of calling me from his cell phone to get permission for something while I was there. So I have texted him in an attempt to get some answers. He texted me back and promised to call this afternoon. This is the hardest thing about not being there. Being present means you can buttonhole the doctor you see in the hall. Here you are dependent on them contacting you. You thus lose the initiative and things become much more disjointed. Hopefully I will get more answers when the doctor calls. No one has yet used the term coma, though the nurse said today while perhaps not officially diagnosed, it sure resembled one.

Dialing off the plateau

A brief update from my conversation with the nurse last night. The good news is that dad is off dialysis. His BUN and creatinine levels are still pretty good (29/1.4) and he is producing urine. The bad news is that he seems to have plateaued as far as responsiveness goes. At this point they are taking a wait and see approach with the responsiveness to see if he will wake up o his own and they are inclined to give him as long as a week. Obviously sooner would be better. I've written the VAD coordinator to get a longer view of what is going on and will do another update once I hear from her.

Hurray for the Grimace

I'm back home now after a long night of flying and a day of teaching. But I called the hospital and got some good news. Let me set the stage. When dad first came out of surgery he was fairly responsive. He would open his eyes on command, he would squeeze a hand, he would even nod. But as the days dragged on he was increasingly sleepier and sleepier. He stopped squeezing hands or opening his eyes. As time went on he stopped responding to pain stimuai in his upper body. They put the dialysis line in his neck with out anesthetic, he did make a move. He still would move his legs and even respond to pressure, but not on top. This worried everyone and eventually is why they made the move to dialysis.

Today I'm told that things are continuing to look better. His BUN is down to the upper 30's. His creatinine level is even lower than before his surgery. And today they did an EEG which showed he had brain activity and there was no sign of seizure. So whatever else is going on, he's clearly not brain dead.

All good news, but what about responsiveness. There I'm told he is continuing to make steady if slow progress. He still won't squeeze hands on commands, but the nurse tells me he is opening his eyes just a bit and is now responding to pain stimulai in his upper extremeties. This means when they put some pressure on his hand (squeeze a finger) he will make a face. This seems a big improvement from where he was. At the very least he is really moving in the right direction.

Plans are formulating to start with drawing the support of the machines. They will take the dialysis machine away, perhaps as soon as tomorrow and see how he does on his own. They say he is now processing waste in his urine, no longer just excreting water. And they may start drawing down the RVAD as well. Apparently they can adjust it to see if the heart will support pumping independently without risking a total failure. And they have now stopped all heart medications and his blood pressure continues to do well and be stable. They will probably return the meds when they take the rvad out, but in the meantime this shows a strengthening of the the right side. All this is good news.

The path to waking

I'm actually writing this after a night of flying from my regular airport. I'm pretty tired but I wanted to post about what the status was when I left on Monday night. The good news is that the C.T. scanned no evidence of a recent stroke. Apparently there was evidence of an old one, but since dad has never been hospitalized for one before it must have been small. But, whatever has happened in the past, this is not the reason he is not waking up. The other good news is that it appears his right ventricle is performing better and better. Whereas previously the surgeon acted as though the removal of the RVAD would be extremely serious, and very probably life-threatening, he now thinks that will not be such a big deal and would even be willing to move up the removal date. Though still he was willing to schedule it so that we could be there if that's what we wanted. Likewise dialysis continues to do its thing. Last BUN number I heard was in the 50's. The kidney specialist thought that his numbers might come down into the 20's as soon as today (Tuesday). He thought they might then take him off dialysis and see if his kidney's could now handle the slack, since they would not be overwhelmed with the crap from the surgery. But the big remaining problem is of course dad's inability to wake up. The surgeon doesn't quite understand it and is not completely convinced that the kidney problem explains it. Still he doesn't have a better theory at this point and so he's willing to go along with it. His real fear is that dad has significant neurological problems. But why that would be the case, no one is particularly clear. They think there was a significant loss of blood pressure at some point, but honestly they could not tell me when. And then there seemed to subtle signs of increased responsiveness. When the nurses were washing out his mouth, he seem to express some pleasure and bit down on the stick with the sponge. Since one of the things that people who have had the VAD surgery report is extremely dry mouth, that follows. And such would exceed automatic responses. So we continue to see if the dialysis will result in his waking up. They will probably do an EEG in the next couple of days when they feel like they can.

BUN in the oven

Just a note to start off with. In the past I have been sorting these posts in chronological order, meaning to see the latest post you have to go to the bottom. I did that so that when dad read it the story would unfold in order. However, i've been informed that this is a pain in the butt for people who are reading it now So I am now going to do this in the typical blog fashion where the latest post will always be on top. I figure when dad gets to the point he can read it, I can rearrange it appropriately. So here is the latest update. Dad has now been on Dialysis about 18 hours. The doctor said his BUN level (which is a measure of toxicity in his blood) was at over 80 when he started. Now its in the 70's. And probably its lower than that because they test his levels every 6 hours and I'm not sure when that test was from. Still, its a slow dialysis so as to be easier on his system so things are not happening very fast. As I mentioned before, a nurse told me he'd need to be below 50 before we had any hope of getting a response out of him. So its a waiting game, with little excitement expected until tomorrow and perhaps the next day. For me then the doctor has told me I should leave. I have been thinking about taking a red-eye back to N.C. tonight. I think they are encouraged that the BUN levels are declining, the dialysis is working. They had some concern that what they were seeing was infection setting in, if that was the case the BUN levels would not have changed. Infection is the top reason most VAD patients die, and those that do, do so in the hospital after their operation. But with the BUN levels going down that does not seem to be the case. And so now its a question of whether there is higher brain damage. But again this will not be apparent for a couple of days at least, and perhaps longer. As I was driving here I dreaded what I would find. But no big bang awaited me, rather a slow drip but in the right direction. So the wait is on.

Intro

I'm starting this blog as a way of keeping track of what happens with my dad's implantation of an LVAD (description below). My hope is that one day soon my father will actually be able to read this blog and know what was happening as he peacefully slept. I should start with some preliminary information. A VAD is a Ventricular Assistance Device. An LVAD is one which is designed for the Left Ventricle which is (as you might expect) on the left side of the heart. Apparently in the majority of patience its the Left Ventricle which has problems, so that is why this is implanted. My dad has Congestive Heart Failure (CHF). CHF is a chronic and degenerative disease. People can live for years with it, but at some point the disease takes its toll. There are four stages of Congestive Heart Failure, the last stage is stage 4, end stage. This is where my father was two weeks ago. My father was admitted 4 weeks ago to a hospital near his home. He had had surgery and was concerned about his incisions healing. He walked into the hospital. He also was complaining about a lack of appetite. After about a week he was not recovering. The doctors however could not find anything additional wrong. His blood sugar was low, his blood pressure was low, but this was all corrected in a couple of days. Still his condition was not improving. He checked himself out and went home, but now he was extremely weak and unable to walk. He went home and had even more problems, increasing weakness and a number of other symptoms. He checked himself into a local heart hospital where they discovered that his heart was operating at about half the level it had been a week earlier. His Ejection Factor was down to 17% where it had been 35% a weak earlier. At this point he was diagnosed as having end-stage heart failure. He was in fact dying. At this point, his cardiologist recommended that he be transferred to a university hospital that specialized in VADs as his last option. He was moved to the hospital and he started discussing the implications of getting a VAD. I should end this post with some explanations. You may notice that I have specifically not used names. Neither my dad's, his doctors or even mine or my brothers. I do this for a couple of reasons. One I am creating this blog in the midst of the situation. I hope for a happy ending but I have no assurance. If my dad doesn't make it I don't want to besmirch the reputation of doctors who are trying their best. As you will see my dad's days were numbered in single digits without the procedure. If my father does not survive it will not be their fault but rather the end of a battle whose goal is to cheat death. We hope for the best, but we cannot but worry that we will end up with the worst.

What is a VAD?

VAD stands for Ventricular Assistance Device. The problem with Congestive Heart Failure is that the heart is unable to pump enough blood to feed the organs of the body. For my dad, there was not enough blood for the muscles of his legs and this is why he felt so week. The VAD solves this problem by essentially taking the heart out of the loop.

In the picture you can see there is a small pump below the heart. There is a line that runs out of the bottom of the heart to the top of the pump. Then a line that runs to the top of the heart. This small pump then takes the blood provided by the right side and pumps out of the heart. But the left side of the heart is no longer involved in any of the blood pumping. The result is a damaged left heart is no longer the obstacle to getting blood to the organs of the body. The VAD is controlled and powered externally to the body. So there is a wire that runs out of the stomach of the VAD owner to a controller which is about the size of paperback book. The controller is in turn powered by a couple of batteries that the owner wears except at night when the person can be plugged into a machine that powers the VAD instead. It is really an amazing piece of hardware. The FDA has approved in it for Congestive Heart Failure Patients. The VAD is implanted and used for the rest of their lives. The results are impressive in terms both longeivity and quality of life. Bed ridden patience have with the VAD become active and productive again. People live 4 times longer than with other therapies. Here's an animation of how it works. How it works If you are interested in seeing some examples here are some videos that show patients after the operation Marvin's Story To Life To see some very cool (but a little disgusting video of the actual operation Operation> Its probably not something that you would just get, but if your choice is this or death, it is a viable alternative to the afterlife.

Dad's Decline

After my dad was admitted to the hospital where they do VAD procedures, I came and stayed near him with my brother. Dad was admitted the Wednesday before Labor Day and was scheduled for the operation the day after labor day. He was hooked up to about a dozen different medications as they tried to stabilize him before the procedure. The result was a fairly quick decline. Over the 5 days before the surgery I saw him gradually slip away. When I arrived he was lucid but could only talk in a whisper. He would tire after a few minutes. Still when I could hear and understand him he still was mentally alert. As time progressed however, the deteriorated. While his voice improved with the help of a speech therapist, he gradually became less lucid. First he was unable to hang on to the flow of a conversation. By the third day he was unable to follow much and responded only in small sentences. As I explained the operation and the possible positive and negative results the best he could muster is "get'r done" By the fourth day he was having difficulty distinguishing reality from illusion. He dreamed his partner had left him to join the FBI (not really a possibility). He would lose track of what he was saying in the middle of a sentence. He tried to draw a clock for the occupational therapist. He drew the circle and then the 12 and the numbers down the left side. By the time he got to six he had lost track of what he was doing and began writing numbers all the way back up. The clock ended up with 14 right next to 12. The day of his surgery he believed he was in a clinic in Tijuana and refused to have the operation. My brother and I, alerted by his partner that he was refusing the operation raced to the hospital at 5 in the morning where we talked him down. We reassured him he was not in Tijuana, but a top notch medical facility in the US. As he slept he would occasionally wake up muttering about taxes and business regulations. We would reassure him all these would be taken care of and he drifted off to sleep. Later he asked the operation be postponed until he was stronger. We told him he was declining and that he would not get stronger with out the operation. The operation had been delayed from 7 am to noon because of a heart transplant. But by the time the anesthesiologists arrived to get him to sign the release he did so without objection. There were other signs as well. Dad's breathing became more difficult and shallow. By the last day when he was sleeping he looked like he was struggling for breath. His arms were swollen in spite of the lasix they were using to try to get rid of the fluid. And he still was not eating. He had no interest in food, and even when we were able to get him to swallow something, he would complain that he was nauseous. He was physically weaker, an attempt to actually sit on the side of the bed was unsuccessful and exhausted him. I believe in retrospect this was an attempt to try to show that he was improving and should therefore put off the surgery, but if that was his intention it failed miserably. He was near the point of death and he was miserable. But my father clung to life, he may have been unhappy, but he never dispaired. While he was afraid of the surgery and the possibility of death (he said to the surgeon when he came by to see how he was doing the morning before the surgery, "Don't kill me." The surgeon answered "I understand" -- perfect doctor non-committal speak) it was the very fear that showed he was not ready to die. The doctors told us that the current medication regime would keep him alive for a week or two at best, without the medication he had a day or two. The VAD offered a way to get back possibly years with better quality of life. Despite his fear, we pushed on toward the surgery Around noon he was wheeled into the operating room and thus began a long wait for us.

Non-standard Operating Procedure

Surgical waiting rooms are miserable places. But nice miserable places. The one at our hospital was very nice. Comfy chairs, big screen TV's and right next to the cafeteria in case you wanted comfort food. But their miserable because they are all about the waiting, and there is nothing fun about waiting. Our hospital had a pager system. Once you checked in at the waiting room you were given a pager, like you were waiting for a table at Olive Garden, and periodically it would go off. You'd go to the desk and they'd give you information. The first time it went off was two hours after they had take dad to the Operating Room. They told us that all was going well and then he had been put on the heart and lung machine. Good news, they said, and then sent us back to purgatory. The operation was planned to go like this: The would make an inscision in the sternum and pry the ribs appart exposing the heart. Then they would attach dad to the heart and lung machine which would then essentially replace all the functions of his heart. After that they would attach the pump to the heart. Fire up the pump, unhook the heart and lung machine slowly and the right side of the heart kicks on, the pump picks it up and heart function is now given an artificial assist. Another hour later the VAD coordinator came out (dressed in scrubs) and told us the operation had gone well, they were just finishing up, in an hour we would could see him in the ICU. We were so relieved. We thanked the doctor and breathed a sigh of relief. We sat back and relaxed, it was just a matter of crusing to the finish line now. An hour and a half later we went up to the ICU to see him. When we arrived they told us he had not been brought in yet. We took a seat in the ICU waiting room. Shortly thereafter the VAD coordinator came in and said there had been a complication. The right side of dad's heart had not restarted as the expected. They were using some medications and giving it a chance to rest before they tried it again. They would be in the O.R. for a while longer. We shouldn't panic, this sort of thing happens occasionally. They would keep us updated. We had returned to purgatory. About an hour later the VAD coordinator came in. This was her final story she said, and she was sticking to it, the attempts at restarting the right side of the heart had not been successful. The right side was not generating enough pressure to force the blood into the left ventricle. Instead it would just expand. They expressed surprise, this was not what they expected. So after trying to prop it up with medications, they decided to install a Right VAD as well. The thing about an RVAD is that it is a temporary measure. A "Bridge to Recovery" it could not stay in. But it would give the right side of the heart time to heal and then they would try it again. The surgeon came in shortly after. He was very surprised, he told us. All indications before the surgery were that the right ventricle was sufficiently strong enough. He thought they could have tried to limp by with medications but at the risk of the other organs. This way the other organs would not be compromised and the right side would have time to heal. They would leave it in for about 5 days, and then see how it went. That, they thought, would give the right side time to heal. Perhaps the right side had been traumatized by the installation of the pump, they speculated, and thats what went wrong. But with time they had hope that it would be restored to normal function and we could get on with life on the LVAD. The move from the elation of success to the sudden eruption of the complication was a body blow. I was blindsided. They had said everything was all right and now everything was not all right, everything was very far from alright. But the concern about the RVAD, the doctor said, was a future concern. Right now they had to make sure he had come through the surgery in tact. There were two key components. One was to ensure he was still mentally O.K. This meant he would need to wake up and be able to move his limbs on command. The next was kidney function. He needed to pee. If the kidneys didn't work, or his brain had been damaged the issues of the heart were irrelevant. In order to get to the heart round, we had to get through the brain and kidney rounds first. Shortly th

The Waiting is the hardest part (cont'd)

We were back in purgatory. Dad had survived the surgery but the verdict was still out on whether he was going to live. We saw him that night, hooked up to a dozen machines, breathing on a ventilator, he looked awful. But of course everyone looks awful when they come out of surgery. They sent us home. He's going to sleep all night, they said nothing is going to happen until the next day. They hadn't even closed him up, they told us, just put a bandage over the wound just in case they need to go back in. The next day the gave him a "sedation vacation" brought him out of sedation to see if they could get a response. We took a shot at it as well. Standing on either side we tried to get dad to move his fingers. He could. We asked him to squeeze our hands. He couldn't. I told him we were going to go back to the waiting room, but we would be back to check on him, O.K.? He nodded. He Nodded. Or did he. Did his head merely twitch and I wanted it to be a nod so I thought it was a nod? I didn't know. We went back to the waiting room. We talked to another family who were currently in purgatory. Their father was also getting a VAD and he was in surgery. We knew how they felt. We tried to comfort them, to share our experience, but our words felt hollow. We knew surviving the surgery was just the beginning. An hour later the VAD coordinator poked her head in. Its all about the peeing, she said, he's gotta pee and she was thinking about stamping on his bladder she joked. They were watching she said, more news to come. About an hour later, we went back in the ICU. We were there as the nurse was recording the urine out put. One inside the room, one outside. Through the glass the one on the outside mouths -- what's the urine. The nurse on the inside signals a 4, a reduction from the hour before when it had been 5. But then he signals a zero. 40cc's. That was some pee. The nurse explained they had given him liquid, figuring maybe he was just dry. And so it seemed. They had also given him some medicine to prime the kidney. It seemed to work. But could he continue to urinate without the medicine. When we came back an hour later the answer appeared to be yes. He was now up to 70cc's and they had taken him off all kidney medicine. He seemed to be doing it all on his own. meanwhile, the nurse had gotten him to squeeze both hands and also seen him nod his head. Perhaps it wasn't wishful thinking after all. By the end of the day they took him back in the O.R. They were at least going to wash out his incision. Maybe, they said, they were going to sew him up if it looked O.K. and maybe, just maybe, they were going to remove the RVAD or at least "play" with it. I signed a release the gave permission for all the above. We went back to the waiting room. An hour later they brought him back and we talked to the surgeon. He looked good, the surgeon said. He had decided to sew up dad's chest closing the wound. The RVAD stayed in, we would still wait for that. Dad would sleep now. Tomorrow they would take him off all sedation and let him wake up. And perhaps they would be able to remove the breathing tube. For now they told us, go home. Everything looked stable, they'd call if anything happened. We decided to go catch a movie and try to take our minds off what was going on. We ate some dinner and settled in to watch an action movie. I had no service in the theater so I was relieved when I got out to see I had no messages. No news was good news and we headed back to the hotel. Moments after arriving at the hotel my phone rang. Dad had started bleeding and had reached the threshold where they need to do something, about 1 liter. They wanted my permission to return to the operating room, open him up again and try to find the source of the bleeding. It could be a major organ, and they would try to repair it, but that would be a bad thing. I asked them to call me when they had finished. It was ten o'clock. My phone range at 1 am. The stupid thing froze while I tried to answer it. I quickly called the number back, but the doctor was clearly leaving me a voice mail. I waited for the voicemail to come through. Everything was all right she said. They had stopped the bleeding. I called her right away. She said nothing was big or vital, just some small cuts that she easily fixed. The next morning the surgeon speculated on what had happened. What we understood is that a couple of blood vessels or capillaries that perhaps had not been used in a long time due to the decreased blood flow, now suddenly had blood and they had started bleeding. Perhaps they had degenerated. At any rate, such a thing in a normal person would heal itself, but they were being extra careful with him. But the bleeding had been staunched. We had reached our benchmarks for the first day. We had kidney function, neurological function and had addressed bleeding. Now they would start the process of waking him up.

Slo Mo

It is now Thursday. My brother and I have been just over a week. The surgery was three days ago and time has slowed down. Yesterday they started waking him up. But really nothing happened. Nothing good, but nothing really bad. He slept, he urinated, they put a feeding tube in him. No bleeding, no trauma, just hour after hour of waiting for something. The goal at this time is to remove the breathing tube but that isn't going to happen today. He is not alert enough. We we look at him he's got his eyes squeezed shut, like he doesn't want to see what waiting for him, like he's unsure that its such a good idea to exit his dream world. I suspect its peaceful there. Perhaps there he runs through fields and feels no pain. If he opens his eyes thats not what he will see. Can we blame him for not wanting to give that up quite yet. We spend most of the day, but by late afternoon we are tired. Our backs have started to hurt from the chairs which are decent but we're not used to the endless hours of sitting. Particularly my brother who is on his feet most of the day. He is actually starting to feel sick. Maybe its from the waiting, maybe its from something he ate, but we leave mid-afternoon. We go back to the hotel and I write while he sleeps. Despair starts to creep in. Our own emotional reserves may be reaching their end. We sleep the same sleep as he does. In my dreams I am home and he is healthy again. When morning comes I don't want to open my eyes either.

indecision

It is now day 9 of our stay here and 4 days since the surgery. Our lives have started to intervene in our time here. Our employers, while sympathetic are wondering when we will return. We contemplate plans of action. Should we stay another week? If we do will we have to invoke the family and medical leave act? I'm a college professor, I can't just call a substitute. My classes are based on what I know, there's no good B plan. This week my T.A. and another professor have shown some videos I usually show later in the semester. But I'm out of those and now the question is what to do. But ultimately the question is dad. But at this point we wonder what kind of benefit we are giving him. The doctors encourage us to go back to our lives. For now they say, things are pretty stable. The real issue will come when they take out the RVAD. But they are leaning towards doing that later rather than sooner. While originally they were going to leave it in for 5 days, now they think two weeks is a better idea. You can't put your lives on hold indefinitely, they tell us, and we can handle his care here. Our goal, they assure us, is to get him off the respirator, get him started with some physical therapy and start his recovery even before the RVAD comes out. But there is not much you can do, they tell us. We are conflicted, its hard on our families for us to be gone. There are wage losses for my brother, but even though I still am getting paid, there are practical considerations. We eat out every meal, the hotel though in expensive adds up to hundreds of dollars over our stay already. And his progress seems very slow. We don't see big improvements, but not big declines either. The word they continually use is "stable." We too feel we are in the stable.

Wake up dad!

The problem now, as the doctor has explained it to me is that he won't wake up. We can see that this is not usual. The other patient who had the operation at the same time is now flirting with the nurses (at least the female ones). Dad still seems asleep. If they shout at him he will open his eyes, some. But not much. This is now a problem they say. He has been off all sedation for at least a day now. Nothing is keeping him asleep. So why is he still sleeping. They are not sure. Maybe its because both his kidneys and liver are not operating properly. The medication he has been on has not been processed out. Maybe there something more wrong with his mental state than they thought. They're not sure. But his kidneys and liver are a problem. They doing a doppler scan of his renal arteries. If there is a clot the they say that would be bad. But it may be something like not find quite the right level of fluid he needs. They are doing more tests. In the meantime they are going to put him on a slow form of dialysis and give his kidneys a chance to rest. If its just a matter of adjusting to the new blood flow, maybe a short term dialysis will do the trick. As for the liver, they think maybe there is a blockage there as well. They did an ultra sound to try to determine whats going on there. We will have to see. In the meantime as long as he sleeps, perchance to dream, we have problems. In other news, my brother gave me quite a scare when he fainted in the waiting room. He had some food poisoning (we think) and it just got to be too much for him. He spent the afternoon sleeping it off. He leaves tomorrow. I will miss him when he goes. Its a lot harder without him, I found out today.

What goes down...

So yesterday was a down day. Dad was not doing well. The ICU doctor was looking very downcast. But the VAD coordinator was still optimistic. I asked her if the problem might be that after a diminished blood flow, the post-VAD rush of blood might have shocked his organ. Not the quanity of blood, she replied, but the way the blood comes. The heart pulsates blood through the body with little rests between each beat. On the other hand the VAD is a continuous flow device, this means there is no pulsating (and interestingly enough, dad no longer has a pulse). This flow, she continued, especially with someone who was pretty sick to begin with like dad, often results in some bumps at the beginning of recovery. So we have some hope today, whereas yesterday things looked very grim. Magic Mountain has nothing on the roller coaster we are on. My brother has returned home, after his incident yesterday and the demands of his life, he felt he needed to go back. I miss him, but we all need to make these kinds of decisions. I will have to make the same decision myself, probably tomorrow evening. If dad continues to make some progress I will probably go back as well. As I mentioned yesterday we will all plan to return when they take the RVAD out, but the timing is uncertain as to that.

Don't touch that dial-alysis

So we are in a bit of a transition space here. New medications are increasing dad's urine output, but he still less than they want and less than he needs to get the fluid he's retaining out. Additionally his creatinine level (which indicate kidney function, lower is better) have been rising. Before his surgery he was at 1.6, last night he was 2.9. However their morning numbers put him at 2.8. If this continues to decrease in conjunction with increasing urine he could recover. However, they are not feeling particularly optimistic about that. Today a kidney specialist came up and looked as his file. Essentially he thinks that he wants to give the medication a little more time. But he suspects that they will need to move to dialysis. Apparently there two kinds of dialysis. There is the kind most people get which is three or four hours of intense blood cleaning. The drawback of this is that it can have a negative effect on blood pressure. Then there is another kind, it is a more slow process and runs for 24 hours. They refer to it as CRRT (continual renal refreshment therapy -- I think). Anyway this doesn't have the disadvantage of the blood pressure problem, but it does take the whole day. Still what they propose is actually a combination of the two. They start with the CRRT approach, this cleans his blood and hopefully he regains consciousness. Then they switch to the more traditional dialysis if they think he needs it. But the goal is to do it as few times as possible. Just enough to give his kidneys time to heal. On the other hand they don't want to go down this road at all if they can help it. So again we wait, we watch, we hope, we see. I should mention that the various tests they have run have not discovered anything problematic in his renal artery. This is good news because that would have been very bad. So their going off the theory that his kidney was distressed during the operation and give time and treatment it will recover. In the meantime I continue to spend most of my time in the waiting room. I'm lucky enough to have some friends willing to join me for dinner as I look forward to a bit of a break.

on to dialysis

So dad's condition did not improve overnight. His creatinine level is up to 3.2, his BUN number is up, his urine is up but its not pushing the toxins out, he's just passing water. They say today is the day they have to move to dialysis, it is no longer an option. At this point they are working to stablize him. They are still hoping that if they clear the toxins his mental state will improve. He still has not woken up yet. But given he is not excreting any of the medicines, that is still not a surprise. But his mental state is getting worse. He's less responsive than before and that was not so much. Basic neurological functions are still in tact, but what's going on with the higher functions is anybodys guess. I fear that even if they are able to get him to wake up, I may not get my dad back. But this is a worry for another time. For now the concern is getting him to stabilize. He's out of the stable but not in a good way. Dialysis however is not without risks as well. They have to put lines in and they say his platelet level is down. Apparently there is risk of bleeding in the very process of putting the lines in. I suppose he could actually bleed out. As I talked to the doctor he tells me dad is declining. If dialysis can stabilize him perhaps they can give him room to improve. But if he continues his decline I sense the end is not far away. Yet today is 9/11, a day to be a hero. Be a hero, dad. Be a hero.

There's a clot that's wrong

So in the process of putting in the dialysis tube, I entered the ICU to see what was going on. The nurse hustled me out because they were actually in the middle of the procedure. But the doctor called me back and showed me a syringe with blood at the top of it. He said it was a clot. And he had just pulled it from my father's neck. The clot was blocking him from putting in the dialysis tube. He said he was going to try the other side, but then if that was blocked he would have to use the groin. This he was reluctant to do because he said if dad started bleeding the they would not know because the blood would drain into his back. I went back to the waiting room to await the verdict. Some time later someone told me I could go back in. The doctor told me he was very concerned about the clotting and thought perhaps this would explain some of the things they were seeing. He didn't have an explanation for why this would have happened. Its possible that a person could develop a resistance to the heparin that dad was on before the surgery. In that case occasionally there is a rebound effect where the heparin facilitates clotting rather than preventing it. All of this would have to be studied in dad, the doctor said, to figure out if this was the case. Certainly there is some evidence of this, but more data was needed and he would order some blood studies. In the meantime they had gotten the line in and he was starting dialysis. I talked to the kidney specialist. He indicated that dialysis would go on for probably a couple of weeks before the kidneys would have had a chance to heal. But in the meantime, he thought if dad's sleepiness was the result of his kidney problems it would probably be 24-48 before his BUN level lowered to the point he would be returned to regular mental state. The doctor said in a normal person one's BUN level is around 20-30. If it gets up between 40-50 confusion sets in. Dads level is above 70, so he has a ways to go before it gets low enough to get back to normal. This leaves me with a quandary as to what I'm going to do. I will talk to the doctor again, but apart from the clotting issue that could cause stroke or respiratory failure (though I believe he has a filter in the vein to his brain), the other things are rather long term issues. If there is no immediate danger, I will probably go home tomorrow. But its unclear to me whether we are there or not. I am not sure how I feel at this moment. As he becomes more and more machine dependent eventually there will have to come a time where he breaks those dependencies. When that happens its showdown-at-the-o.k.-corral time., do or die. But it seems to me we are days and possibly weeks from there.

One more for tonight

So here is where we stand: The issue has come down to mental competency (not mine, though clearly thats at issue right now) but whether something happened in the operation that cause some sort of melt down of higher brain cognitive functions. The fact that he has not woken up is the problem. The current theory is that the medicines that he had that sedated him are still in his system, the kidneys are not passing them out. So his has been living in this dream world created by the drugs that were only supposed to keep him there temporarily. Instead because his kidney is on strike, they have trapped him there. In a television show we might have a dream collaborator machine that allowed us to enter his dream and lead him out. Maybe find him and push him off a ledge. But in reality, what we have are kidney dialysis machines that will cleanse his blood of the drugs and toxins that have been building up. With luck he will start to respond by tomorrow. Maybe not exactly wake up, but be able to squeeze hands, open his eyes, interact with the world, however fuzzily. If not then we have got problems -- big problems. Its clear dad is mentally slipping away. Two days ago he would open his eyes however briefly, now he does not. He would squeeze your hand, now he does not. Now his upper body doesn't respond to either pain or command. His feet will still move if you tickle them, but how much longer will that last? At the rate he was going not long. So now we hope the dialysis gives him a clean start. If not the neurological big guns come in, but at that point they are not extending a lot of hope. So now we hope that like the who's in whoville, he will shout loudly, "we are here, We Are Here, WE ARE HERE!"