There isn’t much to report at the moment. We are still in the PICU. Dorrie has made some progress with weaning off of everything she was on — the sedatives, the hydrocortisone and the vent. The ENT has changed out her trach once, which means it’s now cleared to have people other than him do it.
I finally got to hold her today for the third time since we got here (and the first time in a month.) The morphine is messing with her poor little GI tract the same way it did last time, giving her a hard time getting the poops out and making her fairly uncomfortable. It’s so difficult to help her now that she can’t make noise; you have to actually be looking at her to even realize that she’s upset, unless she manages to get upset enough to make an alarm go off.
Her O2 has been steady at 40% for quite some time now and is a relatively good measure while they try and wean other settings. I was absent for much of the weekend, as I had to work all day on Saturday and slept in/overslept on Sunday, and at rounds today it was discovered that pretty much nothing had been done all weekend with respect to weaning… anything. She was still on the same morphine and ativan as she had been on Friday. The NP who had been here Friday and I couldn’t figure out what the heck had happened, except that it appeared that the nurses totally slacked off all weekend and failed to keep any withdrawal scores. I am rather irritated that we’ve lost two days of weaning and could be that much closer to being done with this crap, but there’s not much that can be done about it now. I have no opinion of last night’s nurse, who apparently not only did not take down withdrawal scores but, even more annoyingly, came up with ridiculous measurements and didn’t bother to check and see if they made the least bit of sense. I rather doubt that Dorrie has shrunk 3″ in this past week.
Today she had a visit from the therapist from the ICN who is covering PICU this week while the normal therapist is on vacation. She had a good time sitting up and moving around and seemed to really enjoy being stretched and rotated. I’m sure she’s pretty darn sick of the crib and being on her back. She had a good nurse Friday who found her a baby sized hospital gown to wear, so she’s been partially dressed now for a few days, rather than just lying around in her diaper. If she behaves herself over the next few days, I may have some luck getting them to let us put her in clothes.
For better or for worse, Dorrie is now trached.
We were fortunate in that the ENT who did the surgery (who also put tubes in her ears back in Dec) had also recently done another trach on another long-term ICN resident. This baby also has Dorrie’s problem — a little neck and a big fat face — which makes a standard trach more likely to chafe and cause skin breakdown. So he was able to order her a special flexible kind which sticks out further so as not to be covered by her neck, and he said he’d had some ideas about initial care which should hopefully reduce her discomfort as she heals from this.
She’ll spend tonight on the meds she’s been on for the past month, and then hopefully tomorrow we’ll be able to try and let her wake up a bit.
The only nice thing about this is that for the first time in 8 months, we finally get to see her face without any tape or tubes stuck to it.
So, here we are, three weeks into our neverending stay in the PICU.
It’s a bit late for a New Year’s resolution, but let’s have one for St. Patrick’s Day: we will NEVER EVER be going back to the local er again.
That said, for whatever reason, and I am not pointing fingers because I have no definitive proof that this was not somehow inevitable, we are… stuck. The PICU doctors have their protocol for getting children off of ventilators and Dorrie will not cooperate. Her dad and I are not doctors and though we can make suggestions, we are not always able to convince them to try them. They are obsessed with the ETT and because the incompetent local er cut it off so short, they are for some reason in terror that it will come out. Though as drugged up as she is and with the leak she has, I hardly think it would be the challenge they seem to think it would be to put a new tube in place. But I will save my gripes about that sort of thing for another time.
The long and the short of it is that they don’t know what to do and (IMHO) they are slightly paralysed by fear. Dorrie can be scary. So they turn to what they know, and several of the PICU doctors have been pushing a trach pretty hard for a couple of weeks now. They insist that as soon as it’s in, she will magically grow to love the ventilator she has always hated and all will be sunshine and roses.
I am skeptical to say the least.
But given their inability to get her a) awake enough to be extubated and b) somehow doing this without breathing over the ventilator (Okay, so it looks like I couldn’t avoid griping about this a little anyway, but really, I will save my venting for later.), short of insisting on having her moved to Boston, I’m not sure what other choice we have. And there are no guarantees that anyone in Boston would have a better idea.
Tomorrow we’re supposed to meet with Dr. Optimist, her nurse and (I assume) someone from the PICU to try and figure out what the plan is going to be. Part of me is still clinging to the hope that she’ll have a suggestion they’ll have to take seriously that will actually work, but I’m afraid we’re going to have to end up with the trach in the end.
I just don’t understand how we ended up at this point. She was extubated for four months — longer than she’d been on the ventilator, if only just. She didn’t just suddenly lose the ability to breathe on her own overnight, it doesn’t make any sense to me. I feel like somewhere or possibly multiple somewheres, there has to have been some kind of gross mismanagement or we couldn’t possibly have gotten to where we are now.
Probably time for an update.
It took a good week, but the staff at the PICU have finally managed to get Dorrie in a good, stable place. Monday last week, she was doing fairly well — oxygen at 40%, sats in the 90′s, etc. Tuesday, they tried to let her come out of paralysis, but she fairly quickly started trying to breathe against the ventilator, with the result that her sats dropped, and they had to turn her oxygen all the way back up to 100%. So they started the vecuronium and turned her back into Ms. Floppy-pants, but even then, they were struggling to bring her oxygen requirement back down — the lowest they got was 70%, and that did not last long before they had to turn it back up again. Finally, they decided it was time to try nitric oxide — and lo and behold, that seems to have done the trick. Right now, her sats are again in the high 90′s, and her oxygen is down to 40% again. They did increase the pressure on the ventilator a little because her x-rays had shown some collapse in her left lung, but her latest x-ray looked good, and we are back to the point where they are going to try to start weaning down her settings in order to get her off the ventilator again.
The main drama this weekend has been dealing with IV access. They had mostly been using peripheral IV lines with her, but they had decided that they needed to get a central line in. The attending decided to try for an internal jugular line, and was successful in placing it, but it did not last long — whether from moving Dorrie around, or from the fact that she’s been drooling a lot and the dressing came unstuck, the line failed yesterday and had to be removed. Then he tried to put in a line in the other jugular vein, but he apparently missed and went into the artery instead, so that had to be taken out too. So then their next option was to put in a subclavian line, but by this time Mom was disinclined to give them the chance to screw up another central line, and did not want to give approval for the procedure. However, the attending and the surgeon declared that it was necessary — there were no more available sites for a peripheral line, and so no other way to deliver the meds she needed. So, we let them proceed, and so far, the subclavian line has held. Hopefully, this one will work better than the last two subclavian lines she had, each of which failed in under a week.
In any case, yesterday’s drama notwithstanding, things are stable now. What’s more, the care team seems inclined to give her another day without any major changes, which is what we would prefer as well. And on top of that, the attending’s plan, after getting her ventilator settings to an acceptable level, is to start by letting her come out of paralysis, which is also what we want. (There must be some weird alignment of stars for our wishes and the care team’s plans to agree so well for a whole day like this.)