The tapestry of the life of a medically complex family

Missing Something

So, today I have this appointment with our ORL- great, amazing surgeon. He’s been helpful throughout my whole experience with my twins and their trachs, has assessed my youngest several times with regard to her noisy breathing, obstructive apnea, central apnea. So when he tells me my questions about her continuing central apnea and what we should plan to do next are too complex to discuss via e-mail – a common way for us to have communicated in the past – I gassed up the car and went in to see him.

When I had e-mailed him last week about the sudden increase in oxygen need of my trached son, asking if he thought it might be that his trach was too short- and how would he assess it, I got the same response. I decided to take my son along with me as well. Today we drove 90 minutes in traffic for a 45 minute journey to get there on time. We waited an hour in the exam room for him to be available. Then, 15 minutes later we are saying good bye after he says we should re-do a sleep study without intervention (no CPAP nor BiPAP) for my daughter, before we do another study with intervention if they decide it might be necessary from the first sleep study- ahm, yeah, it takes nearly 2 weeks to get results, we’re talking a month likely for both studies. And, well, if Tav is voicing past the trach, then he is getting air well, so it must be a lung problem- go see pulmo. “Bye.”

Am I missing something? We reviewed exactly the information shared in the e-mails I wrote. “Do a sleep study at baseline without intervention.” “Voicing = trach size fine.” Is there something complex about that information? Am I missing something?

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