June 9, 2010

To breathe, to drink

Gene was “extubated” (taken off the breathing tube), on Saturday afternoon, not long after his family left to return to NM. His time on the ventilator was made more difficult because of his challenged liver. Usually a patient would remain sedated until shortly before coming off the vent, but because Gene couldn’t really metabolize the sedative (propofil- made famous by Micheal Jackson), he spent six hours one day, then 12 then almost 24 sort of non-sedated, but still intubated, while he cleared enough to follow directions. Fortunately, he doesn’t remember any of it. Originally he said he would never do that again, but has since changed his mind and said he would be re-intubated if necessary. Which is a good thing, otherwise they would not really keep him in ICU and he needs to be there.

There is progress with his lungs, though it is baby steps. He still needs significant oxygen support and respiratory therapy every four hours. His liver has remained pretty much the same, jaundiced, sluggish. He is alert, and when he can be on the nasal oxygen alone, without the addition of the mask, we can talk a bit. He is very, very weak. He is receiving therapy to learn how to swallow and it is painfully slow….the therapist can’t give us any timeline at all when he might be cleared to have a drink of water. He was able to swallow spoons of “thickened water” today, but all he can have is those teeny sponges on a stick (if you’ve ever had one coming out of surgery) to suck on for moisture. He said he was hungry but his stomach wouldn’t tolerate the feeding tube, wouldn’t process what was put in, so he is just on IV nutrition. He doesn’t remember his family’s visit. Fortunately for his dad, Gene became more and more responsive each day he was here, and when MP left he told me that Gene would get better. And Gene has gotten stronger, and we have been able to communicate with each other, and that is a blessing and a gift.

He has “significant” Graft versus Host Disease (GvHD) in his liver, and possibly his skin. They don’t think at this point GvH is what is causing the lung problems. His skin is just blistered all over and he lays on cotton pads to absorb the weeping. The main drug they have for fighting that effect, where the new donor cells see his organs as foreign and attack, is the drug that caused him two rounds of kidney failure. They have been using steroids to suppress it, but it is not really working and has lots of other unwanted consequences. So they came up with another set of medications, with Sirolimus (Rapamune) as the anti-GvH drug, to go along with all the prayers that we hope will save him. The ICU docs really don’t talk to me at all, and the nurses are very guarded. I have much less information about his condition than I did on the Transplant Unit. And the truth is, his transplant doctors just do not know what is causing all of the many problems, or as they say, “transplant-related toxicities”. However, neither the transplant doctors nor the ICU doctors are ready to give up, and Gene is fighting to the end.

One of my greatest struggles this week, besides seeing Gene so debilitated and feeling so helpless, is what does “the end” mean, between remaking an immune system and all the aggressive life-saving measures that an ICU can use? How do you know when enough is enough? How do you carve out a piece of peace?

Patty and Jim left yesterday, but continue to bear the incredible emotional burden we’ve shared these five months. I am so fortunate, and so grateful that they could be my family through this, and so glad they can return to pick up their lives at last. My sister Esther is here with me now, maintaining a lifeline to home. She always finds a positive way to look at some aspect of these non-stop assaults Gene is enduring, and that helps keeps a bit of sanity afloat.

So, the good news: He is off the ventilator and breathing on his own with significant but non-invasive support. His only real pain, he says, is when they have to move him every few hours, and when they have to clean his skin. He told me that he is not really suffering that much. He can talk, and now swallow under therapist supervision. He seems more alert, and stronger than he was when in came in to the ICU eight days ago. He has good spirit and wants to continue to fight. We can still communicate our love for each other. He has a tremendous network of prayer and love. His mouth is healed enough that he smiled today.

We will both emerge from this as changed beings, though it is not clear when or what that may look like.