- Late, late last night, we finally found a pain medication regimen that seemed to help Keegan even out a little and be more comfortable. Another big part of his discomfort was a burning sensation while the dialysis fluid sat in his system, and they added some chemicals to the solution when he was "spiked on" to dialysis again last night. That really seemed to help his irritability, along with a few alternating meds to help with the itching caused by the high level of toxins in his body. Relief from all those symptoms meant he was actually able to get some rest that he desperately needed.
- He had a few more bloody, wet diapers last night, but he hasn't had any since about 4am. This is to be expected (stop and go production) for awhile. No matter what they look like, it is a positive sign that he is maintaining at least some kidney function of his own at this time.
- The dialysis is doing it's job. We pulled off more than we put in him yesterday, and the level of toxins in his blood is starting to come down. One level went back up today, but again, this is only day 2. The drained fluid is much clearer and so far blood-free today! As swollen as he is, it is a different type of swelling than can be improved by dialysis, although he certainly looks less puffy today. The edema he has now is what's called "third-space" fluid, what has leaked out of his cells, and will take time to correct.
- His red blood cells have stopped breaking down so quickly, although his platelets are still extremely low and continuing to drop. We will not replace platelets unless he starts to bleed because (1) they carry a much higher concentration of donor antibodies and (2) the more we give him with this syndrome, the faster he will break them down.
- He is still on oxygen. We tried to stop it this morning, and he quickly proved that he still needs a little support.
- His mood is much improved today, although he still has precious little energy and is highly irritable if not being left completely alone. He did ask for "colors" (aka crayons) this morning and sat up twice on his own. Until this morning, every time we asked him to sit up, he would fight us. We are encouraged by all these improvements today!
- We held off on getting his TPN (IV nutrition) started last night because more fluid needed to be drained off by dialysis. He was allowed to drink some water last night, which was such a relief. Oddly enough, once we were able to offer it to him, he didn't really drink that much. The good thing is that he was able to keep down the water he did take in. Today, we are starting the TPN/lipids and also very, very tiny amount of pedialyte through his g-tube. If he tolerates that today, then we will try a very weak version of his formula tomorrow.
We are excited that we will get to see Audrey this afternoon. She can't come to the ICU floor, but Gray and I are looking forward to going down to the lobby to see her. She is doing just fine with my parents, but we really miss her. Some photos from before Thanksgiving that I never got to share:
Two peas in a pod!
That's about all for now. I really can't explain to you how much we appreciate all your calls, texts, visits, blog comments, and facebook posts. We are living moment to moment right now, and once we get to a recovery floor, visits and meals will be much easier to coordinate. Thank you again for traveling this difficult road with us. It is going to be a long one, and it helps to know we're not alone. We will update again soon.
Do you not know? Have you not heard?
The Lord is the everlasting God, the Creator of the ends of the earth.
He will not grow tired or weary, and his understanding no one can fathom.