After outlining my questions in 2 different e-mails in June I got a terse reply from the doctor's nurse that didn't answer any of my questions and told me I was free to seek a second opinion?! I'd been upset about it all weekend. We decided I would let my emotions cool and wait until Monday to reply. I wrote "the man" an e-mail directly that was diplomatic but basically said, "Really, I came 2,400 miles TWICE and you aren't going to give me your opinion?"
You know what happened next? He e-mailed me himself, THE SAME DAY. And said he'd call the NEXT MORNING.
Then you know what happened? He DID. Just like he said.
And then do you know what happened? He answered my questions. ALL of them. And it took less than 10 minutes. And he was NICE. This man is my hero. I am SO grateful! Now I can move forward mentally and emotionally.
I have to say that often when you have a medically complex kid, communicating through the nurses just causes problems. In the end it actually takes a lot more of the doctor's time. It's certainly stressful for the parents and probably puts the nurses in a tough spot. In this case the miscommunications could have resulted in Ainsley not getting the T&A surgery and me not getting the answers I came 2,400 miles to get, at considerable inconvenience and expense. Luckily it worked out, but I hate having to be the squeaky wheel. I'm pretty good at it, but I really DON'T like it.
So long at last here are the results of our trip to Cincinnati:
- Ainsley's airway has multiple areas of obstruction, all at the vocal cords and above. Her trachea looks good. Although there is suprastomal collapse (caused by the trach itself) it is "the man"'s opinion that it doesn't need to be surgically corrected. Our local surgeon agrees so that question is answered.
- The primary problem is that Ainsley has a poor swallow. My hope is that we can strengthen her swallow with practice and eventually get her to pass a VSS or FEES. If her swallow improves Dr. C says she may not even need airway surgery. It's his opinion that it's the poor swallow and specifically the pooling of secretions that are causing the remaining edema in her supraglottic area. He said that if her swallow was good then the swelling may improve, but if not he could do some work on her arytenoids. Currently he wouldn't because it would increase aspiration and could cause lung damage.
- There quite a lot of lymphatic tissue in her airway. A T&A may not get the trach out but it's not harmful to try and see what happens. I was able to confirm that he said he would remove the lingual tonsils. Our surgeon is going to take a look at them in the OR, and that surgery is scheduled for 7/23. I think that it will be good to get this swollen tissue out of Ainsley's airway because it might alleviate some of the crowding. I hope at the very least it will keep her from regressing with her oral feeding during periods of illness.
- He said that her tongue falls back a bit, you can "move it" but it would increase the risk of aspiration. Okay fine, I don't like the idea of moving her tongue anyway.
- Dr. C's opinion is that Ainsley does not need any major airway surgery. This is good. Or bad, because there is no "easy fix"(if you can call airway surgery an easy fix). Honestly though I am hugely relieved because it takes it "off the table". Our surgeon had been considering a Cricoid Split, but kept changing his mind because he wasn't sure it would help her. Dr. C said no, it wouldn't help. That was one of our main reasons for seeking Dr. C's opinion to prevent an unnecessary surgery. Now we know that there isn't any airway surgery that would help her, not just that they wouldn't do it right now.
- We have a friend who had success calming her son's reactive airway with allergy meds (oral & nasal spray). While Dr. C doesn't think that will help Ainsley we could try it and he doesn't think it would reduce swelling enough to increase her risk of aspiration, which is good.
- His sense is that she will continue to need the trach for quite awhile, at least a few years. But things could improve unexpectedly if things improve neurologically. He doesn't know for sure what will happen of course. I am just glad to know what he thinks because he sees a LOT of complex airways.
At the end of the conversation Dr. C even said he would call Dr. I to discuss things before her T&A. They know each other so this is FANTASTIC! Neither doctor expects dramatic results from the T&A but I have a good feeling about it. The timing is great because we are also starting therapy with a new SLP. We'll be working on oral motor skills with the goal of improving her swallow and speech. Only time will tell where it all will lead us.