Regrouping

Well, yesterday sucked. I was so excited while we were in the waiting room, just getting the surgery done. At first Shannon and I were both pretty nervous because we figured if they were going to see something that would halt the surgery that they’d see it early on, but we’d made it to over two hours in and even had a nurse stop by to say that Alex was doing well and wasn’t having any issues with his anesthesia or anything else.

So when the SURGEON came into the waiting room after, I immediately figured something was wrong (he would’ve had a nurse come out if it were just to report that they were working on the other ear). The first thing he said was “We couldn’t do it.  But Alex is OK.” It only took him a few seconds after that to explain that it looked like Alex had an infection that they didn’t want to mess with, but it was more than enough time for my heart to completely stop beating as I feared that there was something that was PERMANENTLY going on that would prevent Alex from getting CIs. Unfortunately that wasn’t of much ACTUAL relief, because then we were told that it would be at least another six weeks before Alex could go in for surgery again, and that’s the bare minimum without considering getting hospital time and a slot. Our surgeon is currently scheduling out to October. My stomach dropped out at the prospect of waiting even just the six weeks. It’s tough to get a good read on our guy, and that’s probably somewhat by design, but he did imply that he was going to get us in before October. I think I said something about how I would apologize in advance because I’d be stalking his office so he’d get a sense that this was a huge deal for us. He DID explain that he at least got some of the work done that would need to be done anyhow, so the next surgery wouldn’t take that long, but… who cares. I don’t mind the duration of the surgery, I care about how long it will take until he can just get his implants.

The time it took you to read that paragraph is probably less time than it took for Shannon and I to think that we were almost out of what many veterans consider the hardest part of the journey to not even having a surgery date anymore. We both felt like we were out of our bodies as the doctor was telling us because it was such a sudden shock. Everything was instantly turned around. Fuck. We lost so much with that. Six weeks of hearing time gone… the ability to throw him a cool hearing birthday party in the middle of the summer… I could go on and on. I think Shannon and I could’ve written a list 20 points long just out of the conversation we had on the way home.

But the worst part of this, by far, is what Alex has had to endure. The kid just underwent a completely unnecessary surgery. Yeah, we were home in the very early afternoon so between the time we handed Alex to the nurses and the time we walked out of the hospital was only about five hours, but the poor guy was put under anesthesia AGAIN, and had to undergo a procedure where his skull was literally exposed. We’re heartbroken that he had to go through it and the resulting recovery (which, luckily, hasn’t been that bad so far – he’s bouncing like a maniac in his bouncy seat as I type this). Just another thing that’s not fair to him. Emotionally, we’ve been in the dumps.

So it was a big blow, and what makes the wait even less palatable is that we don’t even have a return surgery date yet. I called the ENT’s office while we were still in the hospital to just let them know that we’d be looking and to please please please get us back in at that six week mark or as close as possible to it. The person we’ve worked with at the office has been great so far and she knows what’s up with us, so I’m not too worried about that. She did explain, though, that the issue is getting the hospital time, so they’d have to fight to get more. She said she would talk to the doctor on Monday and get back to us. Barring that, we also have a post-surgery appointment on Thursday where we can try to get a better idea of what’s going on and where we need to set our expectations. So that’s the next big thing. I’ll write something up about Alex’s recovery separately, but the kid’s a warrior. Personality-wise he’s basically back to normal.

Someone on the CI board said it well – six months from now, this won’t matter, but hell if it doesn’t suck right now.

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