Days 3-4

Tuesday

Last night was pretty tough. He was really anxious- couldn't get comfortable, was in some pain and having anxiety about it and worried he wouldn't be able to control it. Didn't want to do anything- he didn't want to sit, or walk. Or sleep. Or watch anything. He was pretty restless and frustrated and just struggling over all with how he was feeling. Lots of anxiety that this kidney wasn't going to start working and we'd have to do this all over again, regardless of what I tried to reassure him. He was in a pretty dark place emotionally and mentally.

We did a small sponge bath but then he started to have some pain so we ended. He got back into bed and brushed his teeth. By then he was due for another dose of pain meds so the nurse brought those in. After 20 minutes it still wasn't covering the pain, so she got in touch with the doctors and they were able to adjust his dose to 3 every 3 hours instead of 2 every 4 hours. That helped him relax and fall asleep. We both slept largely uninterrupted thru the night- which is no small miracle. And it always improves ones outlook for the following day. 

Early this morning his nurse came in and informed us his hematocrit was 19, which meant his hemoglobin was 6.3. Not the lowest we've ever been, but they still recommended a transfusion so they did one unit of that this morning. 

About 11 the doctors came in during morning rounds and we had a good conversation. Again, they assured us it is going to take some time, probably closer to the 2 week range, before everything is up and running the way it should be. It was a DCD kidney. It traveled from far away so it sat on ice for a considerable amount of time. Bryce's bladder hasn't been working in years. The donor was 55+ (which was new information), but had normal kidney function. The fact that it takes longer to get up and going has zero bearing on the life of this transplant. They said in a year, if they compare Bryce's kidney function to someone who had a perfect match, living donor, and started working instantly their numbers would be the same. And that is why they felt so confident about this match. We just need to continue to be patient. His catheter will stay in for a few more days (we may even go home with it), and they will look at numbers and function and decide whether to do a biopsy sooner rather than later. They usually wait until day 7 to do it (sounds like it's pretty standard operating procedure on DCD kidneys) but in this case may do it on day 5 just to be sure so that if all is clear they can send us home.

They also have switched him to regular food (Yay!) so he will have a real meal when he gets back from dialysis in a few hours. He also got the thumbs up to take an actual shower. That won't be until later tonight because he has one more IV treatment of his thymo (anti-rejection) that he needs to get thru his central line in his neck. But as soon as that comes out he is free to take a shower (which he is very excited about).

Slow progress but all good things and nothing that the doctors seem worried about so I'm not either.

By 1 in the afternoon he had produced 25mL of urine. All of yesterday he only made 35mL so this is a small improvement!

He went on a walk and worked with OT, who were really impressed with all he can do.

All of our many (many) hospital stays with Bryce the past 4 years have set a pattern that has given us encouragement for the next phase. The first day or two he's either in pain or mostly out of it, doesn't respond much to anyone or anything. 

Day 3-4 are usually the lowest/darkest emotionally and mentally. He wants to be better but feels like it's never going to happen. He gets discouraged and disappointed regardless of any reassurances or outside pep talks. He withdraws and even though he's more awake and alert and able to talk he doesn't want to. His head space is just dark and he struggles. 

Day 5-6 he's usually ready to talk about it a little more, ready to say "I feel this way but I don't want to feel this way! Make me feel better! Pull me out of this. I'm so glad you're here. I can't do this alone.” whereas on previous days he just goes radio silent. We're in the second day of phase 2 right now. Looking towards tomorrow with optimism. I’m grateful these times spent in the hospital have prepared us for the road we are currently walking. 

My brother shared this quote and I really appreciated it. I felt it applies perfectly to where we are right now.