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This is the post I had hoped to never write. Sepsis had set in, the medical team tried to control it but it seemed it overwhelemed his heart. His blood pressure fell this afternoon, he flat lined and they were unable to revive him. He passed away today.

The VAD was a 50-50 shot at best and in the end he went in too weak. Almost every complication that they list with LVAD's dad had, kidney, liver, infection, right heart failure. He probably had his surgeries in the wrong order. He should have had the VAD put in first and then had the vascular surgery. I believe the vascular surgery weakened his heart. At the time they warned of a cardiac event and we believed we had dodged the bullet when he came through that surgery in tact. But the fact was probably that it had put too great a strain on his heart that he was not able to bear it in the long run. When he finally was admitted for the VAD surgery he was already too far gone. The VAD was the only long term option, a last ditch attempt to beat back death. But it was not to be.

I believe that had he had the VAD surgery first and recovered properly from that, he could then have had the vascular surgery and the story would have been different. But we didn't even know about the possibility of a VAD as a solution to CHF. One of the youtube videos I watched on this procedure made the case that survival rate of VAD patients go up considerably if they have the procedure before they get too sick. My father here, I believe, is a case in point. He was a strong man, but by the time he had the procedure his strength had fled.

If you are reading this because you or a love one is considering the VAD as a destination therapy, I hope this will not dissuade you. Rather I hope that future patients might see this as a warning to not let it go to far but have the surgery sooner rather than later. My father lived 20 years longer than his father. I hope to do the same. But I know my genes argue against me. To that end if the time comes where I am diagnosed with CHF, I will not hesitate. The VAD technology and procedure continually improves. By the time I may need it, I trust it will be much better than even today.

I will miss my father, he was the single greatest influence in my life. I hoped that my father could have shared a lot of things with me that he never will. I hoped he would meet our child, and see the house and life I have. I greive that he will not. Still I see him often looking back at me in the mirror in the morning and he will always be with me.

Farewell to those of you who have been on this journey with us. May your story end happier than ours. But thank you for taking the time to go with us.

Suck it out with a straw

So I mentioned in the last couple of posts that the liver continues to be an issue, and that most doctors seem to think that the liver may be the key to dad's continued decline. Tonight they called me to consent to a procedure to essentially drain dad's gall bladder. Apparently the gall bladder and the liver are all part of the bile system. They think its possible that dad's liver is being blocked an infection in the gall bladder. By draining the infection they hope that the liver can improve. They think it is possible that it will get worse before it gets better, but hopefully it will get better. If the liver improves we may hope that a number of other things will as well. We watch, we wait, we hope, we see.

Remember what I said about the heart...

So remember how I said that the good news in my brother's otherwise depressing report was that dad's heart was doing so well? That might have been premature. As it turns out, the arrhythmia that occurred earlier last week has returned. They have now increased the medications that he is taking for his heart. I have asked for a doctor to call me to get clarity on what this means. The liver function is still problematic and his bilirubins are higher today than yesterday. This means his liver is decreasing in function. Not good.

My brother joins the circus

As I mentioned before, I plan to head to L.A. next weekend at the doctor's behest. In the meantime, however, I wanted to get a better sense of what was going on and so I turned to my brother. My brother is closer than I, but certainly not close (about 1000 miles away from dad). But still when asked, he hopped on a plane and headed to L.A. Once he arrived he was a pit bull, grabbing every doctor he could find, getting them paged and generally putting together as complete of a picture as he could. I owe him a debt for all the work he did this weekend.

Here's what we learned:

Its all about the liver: Every doctor that my brother talked to said the same thing. The minimal functioning of the liver is a contributing cause to all the other problems he has. Be it the lungs, the kidneys, or his varying responsiveness, it all is impacted by the liver. When the liver sneezes the rest of the body gets a cold. Now generally the liver is a resilient organ, so part of what troubles the doctors is the lack of improvement in the liver. What we were perturbed by was that there were not liver specialists that were focusing on dad. I'm given to understand that that changed today.

The kidney's are not coming back: My brother did talk to a kidney doctor and he is very pessimistic about the likelihood of the kidney's function returning. Probably, if dad is able to recover he will be on dialysis several days a week.

A tracheostomy is a definite: The pulmonary doctor that my brother talked to stressed the need for the tracheostomy. She did think, however, that that might improve dad's chances of getting off the respirator. Right now when he does the practice breathing, he's able to do it for about 5 hours, then he gets tired. With the tracheostomy, it is hoped he will have less far to move air and might be able to actually get off the ventilator altogether. This is key to his recovery, he needs to be able to breathe on his own.

The heart however is doing great:The positive side in all this is that the heart continues to work like a champ. The VAD is doing its job, and his blood pressure is good. They don't know why he had an arrhythmic episode this week, but he has been doing fine since.

None of this is very encouraging, and my brother noted that the phrase of the day was "we are hopeful but..." The hope window seems narrowing, at least from my brother's perspective. This seems to be the week they expect things either to turn around or start to go downhill.

I was last night trying to think about this in terms of patterns. Has my dad shown points where he has plateaued and then moved back towards recovery. The answer, I think, is yes. Certainly we saw this with his responsiveness where he was completely non-responsive and now has much more responsiveness. We also saw something like that for the heart, though that was a little cloudier since the RVAD masked what was going on there. Still we saw recovery there. Thus I still think its possible that he's in this fight and may still surprise everyone with a comeback. We watch, we wait, we hope, we see.

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.