Today's post is short and sweet. It's 1 am and he's finally relaxed enough (thank you Homedics lullaby projector) that I can step away for a second...if that gives you any idea of the type of day we've had.
Dialysis ran today, and the nephrologist actually wanted to lower his dry weight because he felt he was still fluid up. He thought his stomach looked distended. He's a baby; that's normal. He says the high pulse and sunken soft spot aren't dialysis related. Agh. This is so frustrating. I feel like everyone is taking this personally. I want everyone to work together and figure this mess out. After about 20 minutes of pleading my case, the doctor finally agreed to just clean his blood today and not take any extra fluid off.
Dr. Tolar thinks there is a possibility of a line infection that is being pushed into his blood during dialysis. There are seriously about 6 or so possible oddball things the doctors are all looking at. The hope is that the infection/allergy/condition will suddenly clear up on it's own (what? It happens :) Seriously though, it does happen around here). I keep hearing things like, "I haven't seen anything like this in 30 years"...boy that's a popular phrase to use when taking care of Daylon :) Ok, so the possibilities range from things that can be taken care of quickly like a change in meds, to something a bit more difficult like an infection (it would have to be a serious one to not have died with all the antibiotics he's on), to something possibly life threatening like his immune system is over zealously trying to kill off some foreign body (not GVHD). Either way, they need to figure it out asap or it needs to up and go away.
Daylon still got a fever tonight, but only 102.7F. He's moaned (this is new) and shivered all evening and well, since about 3 pm (dialysis ended at 1:30).
Before he got too sick I did get to play with him a little. He really liked all the lights and sounds on his dinosaur shape stacker that we bought him for his birthday. He didn't really make any expressions, but he was grunting and started to move around when I told him, "lets dance to the pretty music!" Everyday I see a little bit more of my Daylon starting to return.
As always, we are very grateful that you take time out of your busy lives to check on Daylon and to pray for him. Thanks for all the dialysis comments! I love having ideas when I confront the docs in the morning! Sleep well.
PS- no dressing change tonight, since he was inconsolable pain. Hopefully, I'll have pictures tomorrow.