March
2008
Hole-y Hell
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.
Here’s an update: after our meeting with Dr. Optimist and Dr. Young Guy, we’ve reluctantly agreed to go ahead with the trach. Dr. Optimist is actually — you guessed it — extremely optimistic about how Dorrie will do after she has the trach, and actually, everyone else here is too. Even one of the Pastoral staff who has dropped by to visit occasionally mentioned how one of the other babies here, whom Mom and I know fairly well (he went into the ICN at almost the same time as Dorrie), has done so much better with the trach.
I guess that in spite of my misgivings about having yet another unnatural hole added to our daughter, I’m starting to get infected by all of this unbridled optimism too. Being able to get her off of sedation and paralysis is a big deal to us, and aside from the fact that I’m sure her neck will be sore for a little while, I can easily imagine how she will tolerate the trach better than the ETT. On top of that, according to Dr. Optimist (and again, just about everyone else as well), having the trach will mean that Dorrie’s biggest issue aside from her lungs — her reactive airway — will also be managed. Hopefully, with a trach, we will no longer have to be petrified about having her on her back or in her car seat for fear she will have reflux causing another of her scary episodes. And if we can have her on her back or in her chair, we can do a lot more with interacting with her and working on her development, which for us is a *huge* deal, considering she’s already behind where she should be from having spent so long in the hospital.