Surgery Date 2.0

A few things have happened this week, but I think I was just a little tired of talking about it to write.  Here goes.

It was obviously a pretty rough weekend, emotionally. Alex, however, was a champ. He was practically back to his usual self by the evening of his surgery day. By Saturday, no sweat. We took his bandage off and it really didn’t look too bad, though it was still tough to look. The inside of Alex’s ear bled all weekend, which we were prepared for. Hanging in limbo without having another surgery date was awful. His post-surgery care was pretty easy. He had an oral antibiotic twice every day and eardrops twice a day as well for the infection.

My plan on Monday was to call the ENT’s office during lunch and ask about when the ear bleeding would stop and, by the way, did you guys figure out a surgery date yet?

Shannon and I chat online every day at work, and we both agreed that we wanted to get this done by July.  July had to be the month, and if it couldn’t be accommodated, we might have to email around to New York, Cleveland, etc to see if we had any alternatives to get this kid his ears.

About 15 minutes before I was going to call the ENT, my phone rang. It was the office. I was told that we had a new date. The all to familiar sensation of my heart skipping a beating hit again, and then I heard “July 29th.” I was pretty happy with it, all things considered. It was about seven weeks after Alex’s first surgery. As a bonus, his surgery will start at 8:00 am, so we won’t be waiting too long. Not as if that would really matter; if it didn’t start until 4:00 pm and they wanted us there at 6:00 am we’d do it in a heartbeat just to be done with it. It’s nice that we can at least say that it’s going to happen (hopefully) next month.

We also had our post-surgery appointment with the surgeon. I could write for miles about this, but the quick version is that Alex is healing well. The blood coming out of his ear tube (on the side that he had his partial surgery on) is still fine, and it’s slowing down. Apparently Alex’s little surgery surprise is such a rarity that it’s only happened to our doctor twice in the span of fifteen years. Conservatively figuring one surgery every other week, the chance of this happening to Alex was roughly .5%, or 1 in 200. This kid. We thanked the doctor for getting us back into the schedule so close the minimum of six weeks and tried to show our general appreciation. When asked if we should do a preventative course of antibiotics or anything to help lessen the chances of another surprise, we were told we probably wouldn’t have to worry about it due to the sheer rarity of it happening weighed against the possible detriments. Fair enough. We have another appointment with him a few days prior to the surgery where he’ll hopefully take a good look at Alex’s ears and, if action needs to be taken, have enough time to do it prior to surgery date 2.0.

So we’re idling again, which sucks, but at least we’re on the calendar. We’re still ahead of the curve in terms of getting Alex his implants early enough in his life that he can take full advantage.

Now to twiddle our thumbs for seven weeks.

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.

10:54. Nope.

Doctor just came out. Couldn’t finish the surgery because Alex is coming down with a cold. We have to wait for at least six weeks before we can try again because of the anesthesia. Will have to fight again to get him back on as soon as possible.  He just lost six weeks of hearing. In shock.

Fuck.

9:25

A nurse stopped into the waiting room we’re sitting in. My heart skipped a beat for fear that something was up, but she told us that Alex is doing wonderfully and that they’re “down to the bone.” All good so far.

We just ate a few Tim Horton’s sandwiches and are catching up on texts. Doing OK. Freaked out and saddened that his skull is exposed to the world, but every passing second is a little victory.

8:10

Went to the holding room. Talked to the anesthesiologist and our ENT, who will tell us when Alex has one of his ears done and said a few other reassuring things.

While waiting, Alex has been a complete trooper. No fear from this kid. He fell asleep in his mother’s arms. A few minutes later the anesthesiologists came for us as it was time to begin. We didn’t get to be with him as he was put under, so we gave him big kisses and passed him over as he was still sleeping. Very emotional moment.

The wait begins. Our hearts are broken that he has to endure any of this, but we’re all in this fight.

I can’t wait to get my family home.

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7:20

In waiting room number 3. 40 minutes to go. His vitals all looked great, nothing going on in his lungs or anything else.

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6:45

At the hospital. Second waiting room. Alex is getting his vitals taken. Shannon and I are in pretty good shape. Alex isn’t coughing, wheezing, or snotting despite a pretty good cough attack last night at about midnight. He has his good luck jammies on that he wore for his ear tube surgery. Everyone doing well so far.