Month: May 2014

The Pre-Surgery Consultation

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Last week we met with our ENT who will be performing Alex’s surgery a week from this coming Friday (wow). We weren’t really too sure what to expect from this, but figured it would just be the surgeon giving us the quick breakdown of the procedure and for us to pick out all of Alex’s CI equipment. I asked in advance if Alex actually needed to be there and the receptionist said “yes,” so we brought him along.

After the typical 15-20 minute wait, the doctor came into the waiting room we were huddled in, greeted us, and simply asked if we had any questions. That caught both Shannon and I slightly off-guard, as we thought he was going to basically walk through what the surgery day would be like and ask questions based off of what he said. We’ve already done a great deal of research on the subject so we didn’t really have anything specific to ask, so Shannon asked the doctor if he could describe, in general, how surgery day would go. His response was “It’s going to be a long day,” with a smirk. We were both a little bit annoyed with that response, but I didn’t actually hold it against him for saying that. This is a guy who does these surgeries on a weekly basis and sees countless patients. What’s a scary five hour surgery to us is just a mundane procedure that he’s done hundreds of times to him, so I’m sure that’s sort of a natural response. Of COURSE it would’ve been nice if he had recognized that he had two concerned parents in from of them and treated the question that way, but… I get it. We’re quickly learning that doctors operate efficiently by being clinical. It might seem cold-ish at times, but the only thing that matters here is that we’re with a great doctor who’s going to get the job done. That’s all that matters at the end of the day.

We didn’t really have too many other questions. He noted that because Alex has ear tubes that we’d probably see some blood draining through them after the surgery and to expect that (good to know), and that Alex would LIKELY be able to be taken home the day of the surgery. That’s also huge. He’s going to place the magnet (the circular part of the CI) about four centimeters behind his ears, which I actually prefer to some of the other setups I’ve seen where they’re a good three or four inches away. The only other thing I can think of that he said was that Alex would likely be the youngest patient there, and therefore would be the first to get his surgery, which is slated to take roughly five to six hours. We thanked him again for pushing our insurance company to pre-authorize Alex’s surgery and asked about when we’d need to pick out Alex’s gear and accessories, so he sent us over to one of his administrative folks.

Shannon and I have been very interested in how the accessory process would go, since we couldn’t really get a good dial on how it worked in general. We knew that you got to pick out a few things, but weren’t sure if you were capped at a certain cost and what would come with the CIs out of the box. Oh, and to clarify – the accessories we’re talking about are things like molds that cover the CIs so that they can be used under water, remote controls that show the status of the CIs and can switch through their various programs, audio cables, that sort of thing. I had tried looking at Cochlear of America’s website to get a feel for this, but for whatever reason, I could never get it to show up properly in the browser.

Anyhow, choosing the accessories was relatively easy. Most of the stuff we wanted to get came standard, we got to pick out a remote, and we even get to select two additional accessories in a year, which is a nice touch given that there’s going to be some interesting wireless stuff coming out for the CIs that Alex is getting. We went with black CIs, but they can be skinned easily if he wants to customize them down the road. We were pleased to learn that a new waterproof accessory that Cochlear had just come out with would be included in the package for free. Nice to know that Alex will be able to enjoy sound when we take him to pools and the like.

And that was about it. I would’ve preferred if the doctor didn’t just ask us if we had any questions and had given us a quick breakdown of the procedure and it also would’ve been nice if we could’ve really studied the accessory list at home, but overall it wasn’t bad. Oh, and Alex was never looked at or checked out, so he didn’t ACTUALLY need to be there. Would’ve been nice to have just let the little guy stay at home, but not a huge deal.

Next time we see the doctor, it’ll be the day Alex goes in for his surgery. It’s exciting and scary at the same time, but we’re eager to just bring him back home and start the healing process and get this kiddo moving.

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Ear Tube Surgery

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Playing catchup again. I’m not going to drill into this with way too much detail since this one is such a common procedure.

The ear tube surgery was pretty much a cinch. We ran through the hospitals admission and got upstairs to the minor procedure room pretty quickly, and the nurses told us that we’d be the first surgery of the day. Great! We only had one waiting room we had to hang out in, and the procedure room was right across the hallway. We only had to wait for about an hour until we met with the anesthesiologist, who told us that Alex would only be under for a few minutes, it would be gas-only (no IV), and that he might fight it a bit when the mask was put on him. We could go in with him when they put him under. OK, no problem.

A bit after that conversation they came for Alex. He was given the gas and fought it a LITTLE bit, but he was a trooper about it. No crazy spazzing or crying from our little guy. It was still very emotional to watch him go under, but it was a little bit easier this time since we had a good idea of how he reacted to anesthesia. Soon he was down and we got kicked out of the room.

It was only about ten minutes later that they wheeled him out and into a recovery room. We had to wait another ten minutes or so to give him time to wake up. As soon as he had, we were allowed into the room. He was crying and clearly a little upset, but he wasn’t in horrible shape. He also hadn’t eaten for something to the tune of seven hours at that point, so that didn’t help.

Our ENT popped out at some point (I want to say it was between the surgery and the time we went into the recovery room) to have a quick debriefing with us. He said that everything had gone fine, and that it was a good thing we’d had the tubes put in since a lot of gunk did come out. Of course, I had to ask if getting rid of that would possibly have any impact on him going for CIs, but he said no. It was exactly what I was expecting, but hey, had to ask. Past that, he gave us ear drops that we were to put into both of Alex’s ears three times a day for the next three days and not allow any water to get into his ears for the same amount of time. Past that, he’d be back to his normal self.

We were home way before lunchtime. Alex took two big naps. We cleaned a lot of gunk out of his ears for the following two days and he certainly hated his ear drops, but the whole exercise really wasn’t too bad.

Past that, not much to write about. Shannon and I were both pretty relaxed going in, though we both commented on how much it sucks that this poor guy will have gone through three bouts of anesthesia before he even turns one. It has to be done though, and we’re happy to have that one behind us. His next date with the hospital (knock on wood) will be his actual implantation. That’s going to be much harder to deal with, but I really think it’s going to be the climax of the scary part of this leg of the journey of Alex’s deafness.

The Ear Tube Consultation

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Playing a little catch up here after a busy week.

I took Alex to visit a different ENT than our surgeon, by their recommendation, for the purposes of getting Alex going with ear tubes. Our surgeon noted that he does have some fluid in his ears that need to be drained out prior to surgery to minimize any chance of infection, so that’s something we had to get addressed pretty quickly.

The consult was relatively straightforward, though it took some time because the office was pretty insanely busy. The doctor cleaned Alex’s ears out with a little help from a nurse to keep him still. From there, he was able to look into his ears and verify that he still had some fluid in his ears. He explained that typically, because the fluid wasn’t infected, that he would recommend to just hold off for eight to ten weeks and see if it resolves itself, but because we’re bumping up against his surgery date that he’d go in and take care of it.

There was a little bit of confusion as to whether or not our surgeon wanted him to perform the operation or just validate that he’d need ear tubes that our surgeon would put in himself, so he called him on his cell phone. Nice little tidbit there is that despite the fact that our surgeon is also insanely busy (apparently he has a wait list now for new patients!), he knew who Alex was right off the bat. Good to know that our kid isn’t lost in the hubbub.  Anyhow, our surgeon confirmed that he wanted the ENT we were seeing to go ahead and do the surgery.

I then got a little more information about the procedure itself. Alex will have to be anesthetized, but the procedure itself is only about five minutes and is apparently a cinch. The doctor explained that this procedure is the most common reason why a patient would have to undergo anesthesia, which put me at ease. The tubes themselves are very small, won’t be visible, will drain the ears out after only about two or three days, and will pop out on their own in about a year, give or take two months. No problem there.

The only thing left to do a that point was to get it scheduled with one of the nurses at the front desk. It’s been funny to see how some of the things I’ve thought we’d have major headaches or have to fight over have gone relatively smoothly. The nurse told me that we could actually bring Alex in THE NEXT DAY or wait for two weeks. I opted to wait for the two weeks just to keep things sane for the family, especially since the tubes only needed two or three days to do their thing. Even if the two week appointment gets cancelled because the doctors is sick, the next appointment after that would still leave us a buffer. So we’re going in that direction.

The surgery will happen at Children’s Hospital, same place Alex stayed at during his time in the NICU, same place he had his MRI performed, same place he’ll have his cochlear implant surgery performed. Shannon and I are already familiar with the registration and pre-surgery process and we also know that Alex did well with the anesthesia the last time minus being pissed off for a bit coming out of it, so I think that takes a little bit of the edge off of the whole thing. It’s an outpatient procedure; in fact, we’ll probably be leaving the hospital between one and two hours after he gets out of surgery. Outside of that, we’ll have a six month checkup.  No big deal.

I feel horrible for the poor little guy, though. In the first year of his life he’ll have been put under three times as much as I’ve been in my 32 years of existence. It’s a shitty thing to think about, but at the same time I know he’s not going to remember this stuff and we’re blessed that we’re on a path where we can get him his version 1.0 ears ahead of the average age. I can’t wait for us to get to the point where the surgeries are all done and the work we’re doing is just introducing him to the world of sound.  Two months to go.