More answers, more questions (long post)

[haikumama]

We're on our way home from Cincinnati tomorrow morning. Ike had the full work up: swallow study, upper GI, high res chest CT, flexible and rigid bronchs, endoscopy and biopsies from the GI doc, impedance probe, FEES study... whew.

So far we have learned that

1) he has lateral shelving causing the subglottic stenosis. Cotton thinks he can do an anterior graft and fix it. Very good, but scary to think about.

2) he has very mild BPD, which we have not known about until now. I don't know a lot about BPD, but I always thought we were in the clear because he was only intubated for 24 hours at birth and was never on high levels of 02 after that. Oh well. The pulmo also said he saw some minor lung damage that could be caused by chronic micro aspirations. However....

3) During both the swallow study and the FEES, the speech pathologist and ENT said there was no sign of aspiration with nectar-thick liquids (which is his typical diet), and he managed thin liquids well enough to try out some ice water at home. The speech pathologist said in a few months we can probably move to all thin liquids, and the ENT said everything looks fine and that Ike seems like he will adapt fine, swallowing-wise, to the reconstruction.

BUT, this pulmo stuff is holding us up. We won't know until next week what the plan is, but it looks like the pulmo is really putting the brakes on reconstruction any time soon. This is very disappointing. He seemed convinced that Ike is aspirating his food or saliva, and when the tests showed that no he's not, the doctors were confused.

Maybe the impedance probe will show lots of reflux and that will be what he's aspirating? He just doesn't show a lot of signs of reflux, and he's on pretty hardcore meds for it. Maybe the damage is from last Feb-March when Ike first got the trach and we weren't thickening liquids yet?

Right now, ENT is a go for the airway repair, pulmo is a no, and GI is still up in the air while we wait for the biopsies and probe test results to come back.

It has been a long, hard week. I feel like we have more questions than answers now. I don't understand the lung situation very well. And I don't understand how it will impact the timeline for reconstruction. Months? Years? I just don't see how his lungs are that damaged. He only ever needs o2 when he's sick, and even then, it's just a smidge. I'm afraid the pulmo may be biased because when we met to go over the CT scan, Ike was the most secretiony he's ever been and had a high RR from being excited. This was also only a few hours after having anesthesia for the CT scan. I fear our first impression wasn't a good one, and it is coloring the pulmo's opinion.

Maybe we will learn more next week after the doctors pow-wow.

We really liked the facilities and the people here, though. It has lived up to its rep so far.


feeling like I'm spinning my wheels a little over here,
Kari