Month: June 2014

Surgery Date 2.0

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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.

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Regrouping

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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.

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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

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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

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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

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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

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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.

The Day Before

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When I first started researching CIs after we found out that Alex was deaf, I was really interested in getting an impression of how parents felt prior to the surgery. What I could find was pretty sparse, usually just one-liners about it being but scary but exciting, so here’s my opportunity to jot some things down.

Overall, it’s a crazy mix of emotions and thoughts to the point where I feel somewhat numb because there’s so much going on all at once.

I can barely believe that this is happening tomorrow, first of all. It feels like we’ve been waiting for this day for years now, even though it’s only been a few months. It seems crazy that tomorrow we’re going to walk into a hospital with our boy without an implant, and (hopefully) walk out with our boy with one. There’s been so much hype to sending him down this road that it’s staggering that he’ll have the raw materials needed for hearing in less than the span of a day.

Despite Alex being deaf, I feel lucky that Alex is getting his CIs early, that he was eligible for them, and that that technology exists today, and for all of the advances he’ll see in the future that will hopefully continue to take away the compromises he has to make as a result of his deafness.

I feel blessed and overwhelmingly grateful that we have an awesome team already assembled and ready go for him. In fact, his speech therapist texted me today and told me that she was thinking about us, and to keep her in the loop. I was telling Shannon that it’s such a small gesture on her part, but it means the world to know that the person who’s going to help drive Alex’s speech is already so invested in him. I know the others on the team feel the same way as well. The same, of course, goes for both of our families, who are going to support the crap out of this kid.

I’m incredibly heartbroken that his perfect little baby head is about to be cut open and sewn back together. There’s no real way to lighten that up without being dishonest. I know that we have a great surgeon and that from the pictures I’ve seen, that healing is quick and the scars aren’t really visible most of the time, but I utterly despise the fact that we have to do that to our baby in order to give him his shot at what so many other kids have by default.

I’m scared about the surgery for a few reasons. As helpful as the Facebook CI boards have been for us, today they’re filled with posts about post-op scariness in the way of swelling, infection, that sort of thing. This is a pretty straightforward surgery, but there’s no such thing as a surgery without risk. On top of that, Alex has developed a cold in the past few days. Last night he was coughing frequently through the night to the point where he woke up; I had to “fix” him a few times until he finally went down. Even then, he was coughing through the night. Our sleep was not the best, and I’m sure Shannon’s was even worse than mine. If Alex is too sick (and the criteria for what that means seems to vary), his surgery could be postponed. I feel in my gut that that isn’t going to happen if not just because kids are ALWAYS sick and, on top of that, I think that he just has some post-nasal drip, but the possibility is there. Luckily he’s home with his aunt today, and she’s reporting that he’s getting plenty of sleep, is eating well, and isn’t snotty or coughing much.

What I’m really trying to hold on to, though, is my excitement to get this kid going. Shannon recently blogged about how much it sucks to see that Alex is REALLY starting to get behind his peers now in terms of speech and language. It’s scary to see it creeping on and know that it will only get worse as time goes on without any intervention. There have been a few awesome videos on the CI boards recently that show what some of these kids can accomplish even after just two or three months; the two that come to mind are one that shows a child reacting to words without any visual aid and another of a boy who was babbling and then said “bahbah” or something similar. It completely blows my mind that, if we’re lucky, Alex could be babbling and even give us a word or two by Halloween or Christmas. And what a difference one year would make. Last Halloween we had learned that Alex had some degree of hearing loss, but it wasn’t known exactly how much it would be. We were thinking hearing aids might’ve just been able to do the trick. We were sad, but it wasn’t the end of the world. By Christmas, we knew that he was deaf and were just crawling out of the resulting pit of depression. I think we really lost that Christmas, which is a time that our little family usually loves, so the mere idea of him babbling or having a word or reacting to sound this time around would be a complete and amazing 180 from last year’s experience.

The roller coaster analogy seems very fitting here. It’s sort of like when you’re being taken up that first hill and you look around and can see all the twists and turns, but you can’t see the entire track laid out and trace it from start to end, so you just settle back and get ready for the ride, because there’s no getting off now anyhow.

I should also say that I’m very proud of Shannon and I for getting to this point and staying sane. It’s pretty awesome to know that our marriage not only withstood this initial shock, but made it just a little bit easier to deal with because I know that I had her in my corner. We’ve luckily been on the same page with all of the important decisions; there was never a big heated debate for us about whether or not to send Alex down this route or not, it just boiled down to “do we want him to have this opportunity?” and the answer was always “yes.” We certainly think differently at times, but I think the differences are complimentary and beneficial to us as a team. We’re both invested as hell in this kid and maximizing what he can get out of this approach. Countless conversations have been had strategizing how we’re going to give this kid the best go at it and what we can do to support and cheer him on. We’re going to jump at any opportunity to help him along and give him a kick-ass life, we’ll spend whatever amount of money it takes. We’re a focused team and giving 100% to Alex feels completely natural, not something impeding on our lives.

If you’ve looked up any deaf / CI stories about kids who went the speech route, you’ll know that the surgery is really the beginning of the story, but I think that the surgery is to the beginning of that story as stepping out of an airplane is to going skydiving. Tomorrow, we commit to a decision that will have some permanent implications, but I really feel that we’re doing the right thing for our own child.

Anyhow.  If we’re lucky and everything goes smoothly, tomorrow Alex will get his surgery. It will take about six hours. After a few hours of observation, we’ll be able to bring the little guy home tomorrow night (for anyone who cares enough, I plan on posting updates here in the form of quick posts). He’ll have a bandage on his head for one or two days, and when that comes off, the incisions will heal pretty rapidly afterward from what we’ve seen. He’ll have a post-surgery appointment during which we’ll be told that he’s healing wonderfully so far. For a few weeks after that, he’ll continue to heal up. We may or may not put his hearing aids back on just to make sure that he stays used to the idea that he’ll have stuff on his head. We’ll keep pushing him to get crawling and moving. A few days after the 4th, Alex’s CIs will be activated and he’ll be exposed to the world of sound.

I’m definitely afraid that everything won’t go as smoothly as above, especially because most of our experience with this little troublemaker has been the opposite of smooth, but… I’ve got faith in this kid and the supporting cast. I think we might just get our Christmas babbles this year, but there’s only one way to find out.  It’s time to take the leap.

The Big Day is Sneaking Up

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It’s pretty crazy to write this and think that a week from now, Alex will have undergone his CI surgery to place the electrodes into his little cochleas and give him the foundation he needs to be able to start hearing us.

I feel strangely calm about the whole thing. I think most of that is because Shannon and I have both done our research on the surgery and, maybe more importantly, we’ve seen a significant amount of parents post on the forums we read every day about how they went in for surgery and it was a relative cinch. It’s also nice to know that it’s very likely that he’ll be home the day of his surgery as well. We’ve already seen Alex go under from anesthesia twice now and know that he doesn’t have any really terrible reactions on his way out, so that’s not a huge concern either.

I’ve written before that I have a lot of conflicting feelings about the surgery, but the one that trumps the rest is that it’s going to be great to just be done with it. The thing I get the most emotional about is when I look at his perfect little head and think about the fact that he’s going to have scars on it for the rest of his life unless he goes out of his way to undo them (and we WILL give him that option down the road if he wants it). The implants being in his head don’t bother me too much because I’m completely of the mind that over the larger scheme of things, they’ll be temporary (based on the stuff being worked on now and future tech), and they’re going to enable some wonderful things that he simply doesn’t have access to today. I’m completely encouraged by the results that other parents have gotten in the past using older technologies and therapy methodologies, and it’s comforting to know that whatever solution we give Alex now, it’s going to be the most crude he’ll ever have to deal with. It’s only getting better as time goes on – just ask the parents who went through this in the 90s when processors were still body worn and barely gave access to speech.

All of this said, I have no doubt that this is going to be one of the toughest steps of the journey. Friday’s going to be tough, and I’ve often read that the surgery day is one of the hardest parts of the beginning of the journey, but the good news is that it’s relatively downhill from there. We’re going to have our issues, we’re going to have a lot of speech therapy to put the little guy through, we’re going to have to advocate for him, but I think that stuff will be a little easier to deal with because we’ll have a lot more control in those situations.

Even after all of the hours of researching and reading blogs of the parents who have already gone down this path, it blows my mind that in a month or so, my son is going to be able to hear me say his name, his mom tell him she loves him, and his older sister sing “Frozen” over and over again. I’ve brought up a few times with Shannon since we got our surgery date that I was stoked that Alex would have his “ears” for Christmas this year, especially since I feel that we were sort of robbed of a good one last year since the news that he was deaf was still very fresh at that point. One year later, he MAY be saying a few words here and there. Just awesome.

It’s going to be a hellishly long five or six hours. But I can’t wait to put this puppy behind us and get to the good stuff. There’s a light at the end of this tunnel.