Today we have been in the hospital for 100 days.
We came in to a really cute sign on the crib and another one on the chair from our nurses. Simon is "back". He was smiling and alert and playful today. It's incredible how obvious it is when he's "here" and when he's not. It makes me realize how present he is when he's awake and feeling well.
Little bit of a rough night last night in terms of puking but we challenged him with a greater increase in volume as well as richness of formula. Pretty amazing that given that, he was so chipper and active this morning when we came in.
He's back to standing and playing with us and toys and enjoying music. I'm a little nervous about the PICC line that we'll need to put in to finish the course of antibiotics. He's still a hard "stick" and I'm wondering how many times they'll need to try before they get one in and where it'll be. If it's in his head again that'll suck. If it's in his leg then no baths for a while which he's been enjoying so much lately. If it's in an arm then then I guess it's no different than the IV right now but either of those options require a poke and trauma. I feel so mixed that we're back to that. The Broviack was so great in that Simon hadn't been poked in months. Of course the fact that it got infected and caused him to go septic was not such a great thing- much worse I know. Still it's hard to watch him scream even if it's for just a few minutes. I have to contextualize it in that it's at least him fighting pain and showing a preference for no pain versus the other day when they needed to draw blood (not from the Broviack- it was still in) and he didn't even flinch when the needle went in.
The plan today is to turn off the Milrinone and go back up on the Enalapril. I'm hoping that we can get back to our daily passes for walks and get the little man out in the sun for a little bit. I can tell that he's feeling a little penned in because every time we even just open the curtain he gets all excited to see further and more than he can when it's closed and the world is just bay #22.
We're on day 5 of antibiotics so really only 9(?) more to go and the team is already talking about being somewhat aggressive with getting him off his other IV drugs (Lasix). I know now that kind of talk is the precursor to the going home kind of talk. That's a good thing.
In some weird way I think we needed this (big) bump to really get us to that place of being ready to go home.
Jasmine, our former neighbor, who moved the other day :-( and her mom sent us a sweet email. This side of the annex is a little less warm/home-like without her. Such an incredible journey with so many wonderful people coming into our lives in the midst of this terrible time. Jasmine and her family really have become a central part of this story of ours and my days will be so different without them there in #21. I will say however that I am thrilled to the core that they are on their way home. That is a wonderful thing. May that someday be us.