tracheomalacia

[AliRae]

Here I am again with the next installment of "Holy cow I'm in Africa and I can't figure out what to do!" Today's topic: tracheomalacia.

I have a 5 month old baby at the moment (4.6 kg ... he's just a little thing) who had a large cystic hygroma removed about ... oh, 12 days ago. Failed extubation on POD 3 or 4, reintubated for another couple days, finally extubated. After extubation, got tired about 2 days later and then spent 36 straight hours awake and gasping. Finally got moved back to the ICU where we rigged up CPAP with a Servo 900 vent and a facemask (I still do'nt know how this is staying on). We give him little breaks whenever he seems awake and feisty enough, but I've never seen a kid so stridorous without running for the intubation box, honestly. We're thinking his tracheomalacia goes rather far down, since he occasionally collapses his right lung with no provocation.

Question of the day: any ideas? Any solutions or fixes you've all seen for dang bad tracheomalacia short of traching him? It's not an option because there's no way to get supplies or followup (we leave in 5 months) and living on a dirt floor in the village in rainy season is a sure recipe for disaster. We can't just take him off the CPAP and let him fly, because he works so hard to breathe that he's going to starve to death; he doesn't absorb feeds at ALL when he's on nasal cannula.

We're at a loss here.

[NotReady4PrimeTime, RN]

Wow, that's a tough one. I'm not sure there's a place for dex in this case, but it could reduce any infammation he might have that would make things worse. I don't suppose a trach would be something feasible either, but might have to be considered. How did he manage with the cystic hygroma?

[AliRae]

How did he manage with the cystic hygroma?

We could hear him breathing in the hall when he first came in (no small feat, since the generators are right underneath the hospital and it's always incredibly loud in there). After he was extubated and was actually failing and about to be reintubated because his stridor was SO bad, his mama was totally unconcerned because he "sounded like himself". We don't think he had long at the rate the hygroma was growing...

On a positive note, right before I left last night, I managed to MacGuyver bubble CPAP. A NICU nurse who knows about these things is caring for him right now, so I'm going to head down and we're going to give it a shot. We'll see what happens...

[NotReady4PrimeTime, RN]

A little bit of creativity goes a long way! CPAP is a short-term solution for this young man, I'm thinking. He'll need something more long-term until his airways grow...

We did a slide tracheoplasty on a boy such as this many years ago. Unfortunately he still ended up with a trach.

[AliRae]

Would you like an update? (Too bad- you're getting one!)

We had a major team meeting today. Plan is to keep the kiddo for another week or so. If he's stable (which he hasn't been) stick in a g-tube while we have a surgeon who can do it and see if that helps him in any way at all. If not, re-convene the grownups and talk about palliative care.

And we made him a DNR. Which was an incredibly interesting experience, because his mother has never heard of CPR. Every day it's something new around here...

[NotReady4PrimeTime, RN]

Ali, I was just wondering about your little fella yesterday. Thanks for the update! I think the DNR might be a good thing to have in place, sad as that is. I'm not overly confident that he's got many choices, given where he lives and the limitations it presents.

[AliRae]

I'm not overly confident that he's got many choices, given where he lives and the limitations it presents.

Our constant refrain here is "where you're born shouldn't decide why you die," but all too often it's so true.

Baby's getting his g-tube this afternoon. He slept all night and, while he hasn't improved, he's stable enough to pop it in. So we'll see.

It's been such a learning experience for me. Coming from a system where nurses are often the low man on the totem pole, I've been so challenged in all this. Myself and one other nurse, (an amazing NICU nurse from ontario!) have been looked to as "experts" in the whole thing. She and I have made a lot of decisions about his care, rigging up the bubble CPAP, determining his feeding schedule and nutritional requirements, managing his pain, and being the ones to call the team meetings and family meetings. It's scary, because I spend my off hours just thinking about what I might have done wrong or what I might have missed, because I know I'm the one who's getting asked the questions.

We'll see how this all pans out ... pray for his mama if you're the praying kind. She's 21 years old and has already lost her first child and then a set of twins. The village says she's cursed, and she's pretty convinced this is all her fault. It's heartbreaking.