thomas update – tuesday

Today his blood pressure was running more toward normal – 132/76, which, well, is more normal for me and for him than what it was running. Yesterday (Monday), for example, it was 107/53. However, his creatinine level just seems to keep getting higher. This morning it was 9.2. We found out yesterday morning that his total kidney function (all he has is his transplant, for those who don’t know) is down to 9%.

We thought we were going to get the results of yesterday’s biopsy back this morning, and the medical team was certain we’d have them by noon, so we could all sit down together and make some kind of plan that afternoon. The results finally came in somewhere around 5 or 5:30. He’s still in acute rejection, just like he was when he left the hospital back this time in October.

I had to leave at 7:15, and they were getting ready to start him on his first round of Salu-Medrol. This is the drug I was talking about on Halloween, the one that Dr Hundley said we could try but may not do anything more than a sugar pill at this point. Also, I waited as late as I could, but they were supposed to come in some time tonight and start the vein-mapping for the fistula insertion. So when I go in in the morning, it may already be inserted or may be ready to insert. I don’t know yet. I’ve not talked to Thomas – and as soon as I finish this post, I’m going to bed.

As always, Dr Hundley laid it all out on the table. Someone in the room – I don’t know who; I was surrounded by undiluted Dillon from 10am until 5pm – asked if there was any alternative to dialysis at this point. After I snorted – because he and Thomas and I have had this discussion many times since September 15th, and we know – Dr Hundley said, “It’s dialysis or death. It’s Thomas’ choice at this point. That kidney might last two to three months, or it might last six months to a year without dialysis. But without any medication and without dialysis, it might last two to three months.”

So, my plan is to meet with me and Molly and Thomas tomorrow and see what we can do about planning a living will and all that other happy stuff. Thomas is over 18, everything is his decision, and everything should be his decision. At this point, anyone/the state getting guardianship would be a pointless act, a waste of time. By the time everything went through the courts, Thomas may or may not be here any more. That kind of thing takes six months to a year. And even then, there’s no guarantee that guardianship will/can/should be appointed at the end of it all. So unlike the Dillons, I’d rather sit down in a calm, peaceful manner, explain everything to Thomas so that he really understands what’s going on, and then present him with the appropriate paperwork and see that he gets help filling it out and getting it properly filed. I think everything about this should be his decision. I know I would want it to be mine.

More news as I get it. As always, I’ll be tweeting from the bedside at the hospital.