So… yesterday was a lot better than the day before. The antibiotics kicked in and baby Z’s fever disappeared.
The pedi was still very concerned about his kidneys but agreed not to do any blood work until we repeated the urine test. They wanted to use a catheter but baby Z has been through SO much so I told them just to put the bag on and I would be happy to bring back the sample.
We heard back that the new urine sample was fine… that he is concentrating his urine, which means his kidneys are working! Phew!
Glad I was at least able to save him from more unnecessary pokes (blood & catheter).
He was much more active when awake, though did sleep a lot. He was very vocal when he was awake too.
We moved up the dose from 25cc to 40cc, per neuro team. Will be there for a few days then will move up to the highest dose of 60cc. Basically we were told it will either work or it won’t. Either way, we’ll start to wean him off because at that point the side effects of the drug are worse than what we’re treating. 😦
I hope and pray it works, because after this, we’re out of real options.
Then to start out this morning, he had about 10 spasms. The actual spasms are short, but the whole episode lasted 7 minutes. Plus, he cries after each one now, which is heartbreaking. I don’t know if it’s painful or if it scares him, or if it just feels weird.
Besides having blood pressure on the high side, he really hadn’t had any of the terrible side effects like extreme crying, mood swings, extreme hunger, etc. But he has been much more alert, vocal, and even a little playful at times, though still not my smiley, giggly baby from before. But I’m still hoping and praying the larger doses permanently do the trick. But we’ve only got one more dose and just 8-10 days left before we wean. So I would appreciate you saying a little prayer for him. He doesn’t deserve to be going through any of this. 😦