by Pre-OR trip nights are oddly relaxed for us. Granted it helps that he is “only” going in for a scope tomorrow (they may decide to do some dilation and/or remove granulation tissue), but the reality is that pre-OR trip nights like tonight bring an odd sense of normalcy. I know that sounds crazy, so let me explain a little.
Our OR times aren’t finalized until after 4PM the night before, but since AJ is typically first case, we usually have to be there at 530 or 6 AM. Lucky for us — we don’t have to be there until 11 tomorrow!
But since we never know, I typically just Priceline a room in walking distance to the hospital. Mostly because I’m not a fan of either a) mornings, or b) Philadelphia morning traffic.
The night before surgery we have to hold off on a number of AJs meds. There’s no shots. And there’s also no food or meds overnight or in the morning. It’s one of the only times that we don’t have to make sure he’s up and getting his meds and adhering to his (somewhat) strict schedule.
It mean we are able to hang out in a hotel room, take a group nap, grab lunch and dinner somewhere together as a family (missing Averie), walk around, and just relax a little and not be so hung up on what time it is and what has to happen next.
Now… just to be clear, that doesn’t take away the anxiety of the fact that my kid is going to the OR in the morning…
I’ve actually lost count of how many times he’s gone to the OR. Between the open heart surgeries, the multiple heart caths, gtube and trach placement, airway reconstruction, multiple airway scopes and miscellaneous procedures… I’m pretty sure we have to be nearing 25-30… its pretty crazy to think about really.
Our consent form included the scope, possible dilation and possible removal of granulation tissue (tissue that builds up in places it doesn’t belong – usually due to friction – like from his stent when it was in or his trach tube). With luck we may talk about downsizing his trach or trying a speaking valve someday. The ultimate goal would include the idea of possibly removing his trach someday, but truthfully I don’t feel ready for that yet!
So for now — we are praying for good results tomorrow and a clearer picture of what’s next.
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Also, while I have your attention — we are INCREDIBLY blessed to have friends who help us out, twice a year, getting things out of our house and sold at their multi family garage sale to help make money to cover our always growing list of expenses. Time is something that’s not easy for us to come by, and having people who help out takes a huge load off our shoulders, especially in the wake of major expenses – like needing to replace our rotting windows…
The sale started today – and has a ridiculous amount of stuff, literally something for everyone. They will be “open for business” Friday 7-7 and Saturday 7-4. There’s more pictures and the address here. We definitely appreciate the support, even if you don’t want to go shopping, sharing and spreading the information would be a great help.
