Recovery Day 18...

means that we spent our second Sunday in the hospital. It was a good day. Ian's Prograf levels are down now where the doctors are comfortable. We are now at the point of being highly probable to be discharged tomorrow. I'm looking forward to it. I'll probably return to Charleston for a day or so to get some things done there (bills, etc.), then return for the weekend.

Ian is a trooper. He's eating well and his water intake is on the rise, which is great. He's back to being fully potty-trained (thank goodness). He takes his medicines well, overall, though I think he'll be glad to get rid of some of them when we get to the three months out point. He is climbing around and doing all the normal things. He keeps picking at his staples, which is the only thing I have to complain about at this point.

At the risk of somehow jinxing this, I think we can call Phase 1 of the transplant a success. The liver is functioning. Blood flow through is good. Ian is significantly less yellow (his bilirubin pre-transplant was ~14.8, it was at 0.8 today). He should get completely pink in time and look fully normal.

So, some people have asked what Phase 2 is as well as what other phases there may be. The phases, btw, are simply my perception of the phases. There is no actual phase given to us by the doctors.

Phase 2 begins upon discharge. We stay local, as they'll be drawing blood from Ian three times a week at the start. As they get comfortable with where things are with Prograf and liver function, they'll gradually scale that back to two times a week then to once a week. Phase 2 ends when we are able to all return to Charleston. Phase 2 typically lasts at least two weeks, and a month is more like what we should expect. Things we'll have to watch out for right now are primarily infection as that is our biggest enemy. As a result, it is actually helpful to keep Ian away from home since there would be people who wanted to come and visit him. He'll get stronger as time goes by, thus enabling him to resist infections. His immune system will still function, overall, it will just take him longer to get over a cold, for example, than it would take me or Elaine. So, Elaine, Livy, and Ian will be in Atlanta for at least two more weeks, and probably a month or more.

Phase 3 to me starts when we go back to Charleston and continues until we reach three months from transplant. At that point, Ian will still be having labs drawn frequently, but not so frequently that we'll need to stay in Atlanta. We'll keep him fairly isolated, meaning he probably will not attend church. We will be able to go out with him and do things, but large pressing crowds are a bad idea. Phase 3 in my mind ends when we reach that three month mark and Ian's medicines start to taper down to fewer.

Phase 4 starts immediately and continues until we are a year out from transplant. Rejection is most common in the first year, and infection will remain a concern. It is possible that we'll have to return to the hospital for testing periodically (perhaps even for days at a time) during this year (and even beyond, for that matter). Once we reach a year out, Ian's long-term prognosis takes a jump in the right direction (odds of success are already over 90%).

Phase 5 is the rest of Ian's life. He'll take Prograf forever. He will not be able to play contact sports such as football and hockey (basketball even might be a bit iffy). Education as he gets older will be critical for when he leaves home to be on his own. Many transplant recipients stop taking their Prograf when they leave to college because they feel well and don't think they need it. That cannot happen, or this whole process starts over because the body rejects the liver and re-transplantation is needed.

I hope this provides some information regarding what Ian is (and we are, as well) facing going forward. It will take some time for us to adjust to a new norm, as I've said. It is also likely that we'll have to look at other life decisions as we move forward. Its going to be an interesting challenge, and I'm looking forward to it, sort of. I don't know that we were yet completely comfortable with our new lives in Charleston, but I do believe that God doesn't give us anything we are not able to handle. The timing was right. We need to grow more now, and there's never a good time for a new test to come our way.

I'll try to post more tomorrow after we are successfully discharged, but I'm unsure of internet access at the Ronald McDonald House.