Ugh, just when we thought we were on the verge of some real progress, we got the disappointing news today that Rudy did NOT pass the sleep study! Dr. Pornchai (UCLA Pulmonologist) called this afternoon with the news. Apparently, there was no question about it…shortly after plugging the trach while sleeping, his heartrate spiked and his breathing became labored. (Where was I?) It’s clear he is still dependent on the trach and so we need to stop the decannulation process and wait to see Dr. Pornchai again at our next appointment in late January. We were pretty convinced he was ready to pull the darn thing so today’s news sure feels like a setback. What’s most depressing is the thought of having to reorder trach supplies with CrApria…I’ll have to make that call tomorrow.
We have a couple of questions for Dr. Shapiro (UCLA ENT) and will try to make contact with her tomorrow as well. Now that decannulation is off the table, I guess we’ll move on to plan C (plan A being “heart surgery”, plan B being “decannulation”…) which is working on Rudy’ s food aversion and getting him to eat real food. This is a long, tedious process but the next “major milestone” we’ve been waiting to conquer. Though minor compared to heart surgery or decannulaton, the pressure is on at this point because if he doesn’t learn to eat and eventually eliminate the need for the feeding tube, I think I’ll start to pull my hair out or it may just start falling out on its own. As seems to be our MO this fall, our challenge in the coming weeks will be to stay focused and not dwell in the disappointment. We’ll keep you posted…As always, thank you for praying!