Well, Fuck. (Update #2 - Saturday Night)

gutsymama · September 2014

Lucas's labs today looked terrible. Hemoglobin in the 6s, among other things. NP is very concerned and is admitting us until we get his numbers up and stable, probably for 3-4 days, maybe more.

I'll post an update whenever I have one

Update #1: due to special event traffic (for an event we had been planning on going to, actually) we didn't get to the hospital until after 7, and it was after 8 by the time we actually got to a room. Between one thing and another they didn't get his IV placed until 10:45 (you can read that colon as an expletive). He spent the next 45 min screaming and pooping; I finally got him to sleep for the first time at 11:30. And then they started trying to transfuse him at midnight, bc it clearly couldn't wait until his 5am wakeup time (<---- sarcasm font). Only his line is super positional and they spent the next 75 minutes trying to fix it while he had a series of meltdowns. Now it's 1:30, and he's finally sleeping and transfusing. Good lord.

Oh, and they wanted to keep him quarantined to his room in case he's contagious. You know, because he's been having diarrhea. You have got to be fucking kidding me. That didn't stick, at least.

Update #2 - Saturday Night:

Labs this morning looked good, and we had a better day. We spent a lot of time walking around and hanging out and watching hot air balloons (and @lwrightenator yep we love the garden, DH & Luke are both obsessed with the giant stone ball!).

They ran IV fluids until early afternoon, at which point I convinced them to disconnect and just keep the access open pending tomorrow's labs, and then Luke managed to pull the line out of his hand so he's sleeping line-free tonight

We are currently doing a 24-hr trial run of continuous feeds of a special kind of Pediasure that contains partially broken-down proteins. They think it will help make up for some of the deficiencies in his labs, and either make up for or help rectify the increased diarrhea he's been having. We'll stay here until we are all comfortable with our nutrition plan, which I am totally on board with, especially if we can do it without an IV - it's nice to have support and some of that responsibility taken off our shoulders. I don't know if the continuous feeds will be a long-term thing or not, but if we go home on them it should be just at night instead of 24 hrs - they just want to start him at a slower rate since he's done poorly on continuous feeds in the past and vomited on the last formula we tried, so that means more hours. He's been running for 10 hours now and it's going well so far - FX it stays that way through the night.

I feel terrible that these deficiencies and severe anemia are probably why he's been having unbearably miserable nights for the last 2 weeks. We thought it was teething + extra poops. I kind of hate it that he's already tough enough to not show signs of feeling like crap - the nights were horrible but he was still having fantastic days, not even acting lethargic or anything

He's such a trooper - he's been making friends right and left, and he kept insisting on pushing his own IV pole this time around because BIG KID MOM: