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| Guy was also famished, apparently. |
Which brings us to the hospital... it wasn't so bad. He was in and out of the OR within an hour and it was essentially as easy as could be, though walking in to help put him under is always a bummer for us. He didn't need any dilation this time so we were home again with a drunk baby five hours after leaving. His airway is still too small - he's breathing through a space that is only 60% of the diameter he ought to have - so we'll be heading back again in 6 months... and then 6 months after that... and so on. Oh my god I was so hoping we'd actually be done with this issue. 60% is borderline, any narrower and the flags go up. That means we also still face the risk of a scary-ass surgery if things don't go well. For right now, though, we're good.
We ran into a couple of B's specialists in the surgical waiting room. How to say this... they tend to seem frustrated with us. Just as I got a persistent feeling last year that the doctors thought I was some crazy hippie mom forcing B to exclusively breastfeed (despite tearful pleas for help with his feeding issues during appointments because, you know, my kid/boobs were holding me hostage), I still get the same weird impression from them. Like we're ignoring their instructions or skipping appointments or something. Which we don't, ever. Any order they've given, we've followed. We may ask for explanations and alternatives, but we've always gone with their recommendations in the end. It is possible that we've 'missed' appointments, since their scheduler (worst. ever.) has scheduled us for major diagnostics in the past without ever calling us to let us know. Probably doesn't help that when A gets stressed he comes off as combative (all in the tone), but whatever. Getting that pushback from the docs gives me a pain in the ass. If we are offered multiple options, with multiple specialists giving us different recommendations, it's unreasonable to act as if we're irresponsible for not following some (often unspoken) advice. If you want us in every three months, make a date. If you want us in your clinic, say so. If you want B to get a g-tube, make the argument. We're not unreasonable but we've been around the block enough times to need a real conversation before signing him up to get cut. For pete's sake.
Phew. Ok. I also really need to post some video of B. His new favorite word is Envelope. (Enbelow-puh!) At all hours, envelope! And wheelbarrow (wee-roo roo!), eagle, and penguin and monkey. We're going to the zoo this weekend in the big city. I think he's going to love it.
Dealing with doctor drama just stresses me out. It seems to be primarily the specialists that I have a hard time with; I'm not being combative if I want you to explain why you think I need a certain treatment. It's my freaking body, after all.
ReplyDeleteB is adorable, as always. And yay for a hungry kiddo! I love the pictures.
Have fun at the zoo!
My kid's ophthalmologist is the worst. He actually corrected me like I was an errant five year old last time I was in there - he is infuriatingly superior and unwilling to explain things to me in any kind of detail. I hate that.
ReplyDeleteMy kids fast and then feast all the time. Maybe he's just getting to that (admittedly annoying) toddler phase, where it's either All Food All The Time, or Get Out Of My Face I'm Too Busy For That Shizz. I know that, being the tiny wonder boy, he cannot be permitted to prevail with option 2 - but it does sound incredibly familiar to me. Many are the nights when I say "How on earth can you EAT that much??" - and also - "You haven't eaten in three days, how are you still functioning?"
RG - It does make me feel better to know that the ebb and flow is normal - the medical approach is so cut and dry, we've never ever heard from them that it might be normal for him to refuse food. I really need to meet some other moms in town, maybe get a first hand look at what other toddlers look like. I don't suppose you feel like moving to town?
ReplyDeleteAAL - I suspect you have to deal with the same noise we do, being mysterious and all. On top of the specialists, one of my best friends is a community nurse and said off-hand that dealing with 'entitled' patients like us is her pet peeve. It hit a dozen hot buttons, but I managed not to let the top of my head pop off.