I haven’t really had a chance before now to post on how Namine’s doing, and for that I apologize. They just kicked me out of her room so they could do a chest x-ray, though, so I guess here’s my chance. They woke her up, and she’s pissed.
As far as we could figure, things started with an ear infection. Namine’s right ear has been infected since sometime in December. They gave us some drops for her ear, and things were hunky-dory. Then a culture that they had taken came back, revealing her infection to be fungal. So they prescribed a different kind of ear drop. Instead of the mild protesting to having liquid put into her ear, as she did with the previous ear drops, Namine screamed. She rarely cries, but she screamed, as though she didn’t even have a trach. A screaming, inconsolable child is something that, through all our problems, we’ve never had. So they prescribed a different ear drop, with the same effect.
All this is basically backstory, because this led to us bringing Namine in to see her ear/nose/throat (known as “ent” from here on in) doctor, who put some kind of powder in her ear. Though it’s really unconfirmed, we suspect that this is the reason she got really sick. It certainly seems to be a catalyst.
Later on the same day that she had the powder put in (I want to say this is Wednesday), she started to get a bad cough and a lot of secretions. Neither she nor we slept very well that night. On Thursday, things were worse, and we ended up bringing her into the ER that night. By the time we brought her in, her secretions were a sick yellow green color, and thick.
Namine was barely statting at 80 oxygen when we brought her in, so they bumped her up to 50% or so (she’s normally at 30%, with an average of 88). They’ve only brought her down to 35% today, but that’s a good sign. Hopefully we’ll be able to go home this weekend yet. Her secretions are now back to their normal white color, for the most part. She’s still coughing every now and then, but not with the frightening regularity she was a couple days ago.
I’m waiting for the chest x-ray they took this morning to come back, as well as the culture they took on Thursday of her trach aspirate. We’re told it’s growing something, but nothing definitive yet.
Speaking of this morning, Namine blew her IV at 2:00 last night (This morning? Whatev, it was early/late). That was no fun, with 2 nurses trying to figure out if it was merely kinked or if the IV was actually out. Namine is crying, and I’m trying to calm her down while they’re doing their thing. Finally they just took everything off and I held some gauze to her arm to stop the bleeding. Our nurse opened a band-aid and moved in to put in on, and I told her no, she’s allergic to adhesives. I’ll just put pressure on it until it’s okay. So she walked away, and came back a few seconds later with some paper tape and another piece of gauze. No, I said. I told you she’s allergic to adhesives. That includes all tape. Sigh. These people are responsible for my daughter? Sometimes I wonder.
Then at 3 they wanted to do a chest x-ray. I woke up to some nurse poking me. “Sir? Sir? We need to do an x-ray now.” I’m like, what time is it? I open my phone, and it’s 2:54. What part of “don’t bother her at night” is problematic for these people? (To be fair, Namine herself blew her IV, so that’s not really the nurse’s fault.) I told the nurses they needed to leave and come back in the morning. Later morning, when most of the civilized world was awake. I told them, not for the first time, that it even says in her file that she is not to be bothered in the middle of the night unless it’s absolutely necessary. Sigh, again.