You would think after so many surgeries it would get easier. And in some ways it does. Your perspective changes and what once would have been a big deal is just a "little" surgery. I remember when Adrian was 3 and Ainsley was born we were part of co-op preschool and there was a family whose older child needed an adenoidectomy and they made such a big thing about it, not showing up when they were supposed to because it was so hard on the family (and the surgery hadn't even happened yet, this was all pre-surgery jitters.). That same year Ainsley had part of her skull removed and cut into pieces and put back together...twice. I didn't have a lot of sympathy for these people.
Tomorrow Ainsley is going in for her second adenoidectomy. The last time (Feb 2010) the surgeon only removed part of them because we'd heard full removal can cause nasal sounding speech in kids with low tone. They grew back with a vengeance (now you really can't tell it was ever done) so this time he's going to take them all. Since she can't talk I'm trying not to worry about her "speech" this time. The parents I know from the Trach forum who've experienced this effect seem to think it was temporary. In addition the surgeon will be removing her tonsils, and possibly (hopefully) her lingual tonsils, so I'm calling it a triple tonsillectomy.
Frequently Murphy's Law would have it that Ainsley catches a bug right before said scheduled surgery and we are left wondering whether to reschedule. If surgery dates were easy to come by it wouldn't be such a big deal but the surgeons we use are booked out months ahead and a rescheduled date can mean having surgery at a very non-ideal time of the year. In fact the first time Ainsley was scheduled for a T&A during late summer the surgeon was sick. Then when the rescheduled date came around in the fall she was sick so we reschedule again. Luckily for the 3rd date, though she did get sick (it was winter), she was well enough. But when the surgeon came out of the OR he said he decided they were too small and he didn't remove them.
Then two years later I traveled 2,400 miles to hear from another (top in his field) surgeon that would be the first thing he'd try. Now here we are trying again for a T&A and this time was no exception, thank you Murphy! After months of being well Evie came down with a grossly snotty nose and passed it on to Ainsley. Wednesday she came down with a 103 degree fever. I thought for sure we'd have to reschedule AGAIN but the fever passed by Friday and when I talked to the ENT nurse she said it was our call. A cough would be a deal breaker so we've been watching her like a hawk all day long. Her temperature is back to normal and so far there is no cough (which is amazing for a trach kid after having any bug). So as of this minute all signs point to go though I worry that the universe is trying to tell me something.
We check in tomorrow at 10:45. Hopefully she'll be cleared for surgery and will come out of the OR without her tonsils, all three sets: pharyngeal (adenoids), palatine (the "normal ones") and lingual (at the base of the tongue where you can't see them.) A part of me worries that we need these bits of lymphatic tissue so the more time I have to think about it is just more time for me to second guess the thought processes that brought us to this decision 3 years ago. In addition we now know that the biggest obstacle for Ainsley in getting the trach out is obstructive sleep apnea. She needs her trach to sleep. OSA is a common reason that kids need a T&A. Of course they don't have trachs so one could argue that this surgery isn't needed for Ainsley because she doesn't need to breathe through her airway. But, if she wasn't trached she'd have had this surgery ages ago. If we are ever to have any hope of her overcoming the OSA these tonsils have to come out. I know better than to expect miracles and I don't want any of you to think that after the T&A she won't need her trach.......Still, we can hope, just a little, for good things from it...can't we? ....Stay tuned.