You Guessed It...

...More waiting. I hardly know how to express what I am thinking or feeling so I will simply tell you that Ainsley was scoped. As usual it was difficult to see much (as you can see for yourself on the video below). What was different is that this time she was capped and crying at the time. It was good her otolaryngologist could see her struggle. Normally I pull the cap/PMV off when she starts to run into trouble. She did eventually start to turn blue so I then removed the cap. The doctor "thinks he sees some vocal cord movement" and, when asked, he "still sees a small degree of swelling of the false vocal cords". He doesn't volunteer much information in between cracking jokes. The result of the "BIG" appointment? He would like to see how she does capping awhile longer. No serious talk about the cricoid split, nor removing the uvula or part of the soft palate. But he is going to talk to her pulmonologist, because the pulmonologist requested that. So maybe having another doctor to talk to will help him formulate a clear plan of action.

Below is a chart of the glottic area that (we think) might be causing the problem (narrowness due to scarring)...or not since we aren't sure if she has a problem or which problem that's not a problem is the problem, or not, as the case may be. How's that for contradictory and confusing?!



A video of what her airway and glottic area looks like from today.



It is frustrating because when we see this doctor in surgery he seems to offer surgical alternatives with "some" enthusiasm but as soon as we see him in clinic he acts almost as though he's forgotten and seems very un-enthusiastic about surgical solutions, always asking us to wait it out. We've come to nick-name him Dr. Jekyll because it's almost like the surgeon and the clinic doc are two different people.

When asked "How should we get her to keep the cap on" there was silence, thinking but no response. When asked "How or when will we know whether her difficulty capping is "just adjusting" or if it's because the glottic region is too narrow and she needs surgery" there was more silence and still no response. Near the end I believe he actually said something to the effect of, "Sometimes the best approach is waiting and then eventually the right course of action becomes clear." Which I think really means he does not know if the surgeries he previously proposed as possibilities would help her and he doesn't want to be responsible for the decision. And it also means that his big plan is to wait and wait and then when she doesn't improve with age we'll have nothing to lose so we may then decide if surgery is worth a shot.

Okay, okay so this is why I write a blog, to get it out. I guess I do know how to express some small part of what I'm thinking and feeling, after all. And you can probably sense it's not so good. Don't get me wrong, it is so great that Ainsley's airway has improved to the point of being able to wear a cap. But little good it will do us if she still has to keep the trach. Right now the doctors can't tell me if it's reasonable to expect her to breath with this cap on, or if we are making her suffer by asking her to breath with inadequate airflow. But the only way we'll know is if we make her do it. Hmm. I'm not lovin' this plan. I think back to how years ago we tried and tried to have her wear a PMV when her airway was still swollen before her fundoplication. What a waste of time and energy. And poor Ainsley. Looking back I can see it was ridiculous. She wasn't ready. I'm afraid some day I'll have the same clarity of mind about this plan.

Ainsley isn't feeling 100% today, but she managed to wear that cap (although there was a little nasal flaring) for the entire hour we waited to be seen and then during the appointment. And then again even a little at home afterward, before her nap. Hopefully we can keep up the momentum over this weekend and don't regress. The goal is to be capping all waking hours hoping that somehow she stops removing the cap and that she can magically tolerate it while sleeping despite the doc's suspicion that she will have obstructive sleep apnea. And when she can mange this super human fete of doing what he thinks she won't be able to do, then we go see him again to talk about surgery or decannulation.