The Quick Recap of Our Cincinnati Trip

Read previous blog posts for more details but the quick recap of the trip is this. After the initial meeting with the physicians (including Dr. Cotton) I was disappointed. Mostly because I'd let my fantasies get the better of me and had imagined that A) everything was magically better since she'd not been throwing up and our ENT thought the swelling was from reflux B) that doctor Cotton's team would immediately know what the problem was. - Well Ainsley is way more medically complex than that so I really should have known better.

Wednesday Ainsley had an impedance probe placed to measure for reflux for 18 hours. Results will be available next week. Thursday she had a FEES with an ENT team and then we had a full feeding team consultation. Dr. Cotton's office is going to pull all the information from all the tests, the chest CT, lung wash, biopsies and scopes together to come up with a plan for us late next week. I'll let everyone know what they say as soon as I know.

All in all I was very glad we went. It was tough but I feel like even if there is not much information gained, that in itself is good information. To know there is nothing else I could be doing. Hearing the best airway doctor in the world tell me she's not getting the trach out any time soon was hard but it's better to know that than to have unrealistic hope. I can stop worrying that every time she vomits it's wrecking her airway and that every sound she makes is a sign of improvement that might mean decannulation.

Ainsley has started doing some amazing things, just during this trip. For a girl with developmental delays it is huge: clapping, eating several tablespoons of baby food, rolling over, hitting her smiley toy hard enough to make it squeak, holding out her arms when she wants to be picked up. It feels great. I'm hoping I can start to relax and come to peace with where we are, now that we are back. And its a gorgeous day. It couldn't be more beautiful here in Seattle today. It feels like a fresh start.