There’s really not much to report for today. Apparently David was quite fluid positive yesterday. So much that I almost suspect an error in the reporting. In any case, since his kidneys are still holding at a very good position, his diuretics were increased again. David’s been receiving IV diuretics for a couple weeks now since his kidneys are happy. This allows him to have less volume into him; however, even though it’s IV and should work fairly quickly, David doesn’t seem to show any reaction to a change for a couple of days. So perhaps in a few days time, David will all of sudden show he has been dried out and the diuretics will need to be scaled back. That seems to be how it is – we’re always chasing David since he does not respond quickly to any changes.
Another change for David today was adding back his amino acids to add protein into his diet. However, rather than give the full dose they tried over the weekend, they will go slow to help his body adjust. We started at 30% today, and so far he is tolerating it quite well.
Finally, they adjusted David’s weight today. This just means if he needs a medication that is based on weight, he’ll get a higher dose. It sounded like most of his meds were not based on weight at the moment. He still weighs more than this weight, but the thought is that the extra weight is fluid. They tried to extrapolate which curve David is trying to follow, but his growth chart is a bit wonky. Initially he didn’t really gain until we went home, and now it’s up and down depending on fluid balance.
David had a combined OT/PT session where they finished up his neuro-assessment (at least I think they did – they were happy to play with David while I was in a meeting). After that ended Speech came in, and he got to do messy play with peaches and then they read a book and played with toys. After therapy, he took a nap. Then when he awoke, he sat in his chair in the bed for a bit until he took another nap. This evening, we read a bunch of books to all 3 kids. I think David liked the books that his brother and sister had picked out from the library. He also got caught up on the couple pages missed from Harry Potter last night. Overall, he had a great day. We thought the helmet guy was going to stop by, since he’s come by every Wednesday, and his helmet needs some adjusting. We’ll find out if we can get him out tomorrow. On our way home, we were able to witness some spectacular rainbows – which was much more fun than the torrential downpour of yesterday.
Oh my goodness, is that Eli’s guitar?? How sweet is it that big brother is sharing that! I continue to be amazed hearing how you and Adam – as well as his entire care team – work so hard to provide a “normal” life with the so many obstacles in your way. Story time with Eli and Anna, playing with food, wagon rides, time outside … oh wait, I guess have Taylor there to hang out is pretty unusual and special LOL. My prayers for good days continue for you all.
I think that’s actually Anna’s guitar – she’s a little better at sharing (it helps that they were not around when it was pulled out LOL). You mean Taylor being around is not normal? David’s going to grow up thinking it’s totally normal to hang out with her 😂