Post-Surgery Checkup

Alex had his post-surgery meeting today with his surgeon. His ears completely stopped bleeding two days ago, as did his nose. His incisions also still look great. We never noticed any sort of balance issues or change in feeding behavior, so really, we didn’t have any questions for him besides asking about him snorting occasionally.

The checkup was about as simple as it gets. He took a look at the incisions and ran a finger along them, probably to get an idea of the swelling. He then took a look inside of his ears and noted that he had a little bit of dried blood “flakes” in both of them, so we can expect to see those. He also mentioned that though the incisions look great, there’s a chance that they may widen as the skull grows, but even if it did, his scars would probably not be noticeable unless you knew to look for them. He also noted that the pink / red hue of the incisions can take up to two years to completely clear out, but I don’t really even notice it now. Bottom line, the kid is in great shape.

Aside from that, he basically told me that we were essentially done with him; not in a bad way, though. Alex hast his implants and his healing looks great. Unless he has any issues that are related to the implants, the surgeon’s job is finished! He said that he’d be keeping an eye out for Alex at Buffalo Hearing and Speech since he spends a day per month there, so he’ll be in touch.

All in all, it took fifteen minutes between walking in and walking out of the office. I unexpectedly felt pretty good about walking out of there, because unless something weird happens, we’re done with that. The feeling of finishing things and putting them behind us on this whole adventure is pretty refreshing. One last office to worry about.

Speaking of finishing things – we suspect Alex might wrap up his physical therapy soon. Despite the amount of heartache he gave us by not crawling until a little bit later, he’s basically exploded in the past two weeks in terms of crawling and pulling up on things. I think between this, the genetic results, and all of our physical therapist’s evaluations, we’re really just not all that worried anymore about his development for the foreseeable future. Our early intervention coordinator called me a week or two ago saying that she needed to get together with our physical therapist – I suspect this could be why. I know that when she goes we’ll both feel bummed, because she’s been a key cog in keeping us a little more sane over the last eight months. At the same time, though, that’ll be another great victory for our Alex. I really like that we’re getting to the point where Alex’s therapies are going to be in the hands of one organization that is constantly receiving accolades and that has already earned our trust and respect through the people we’ve met there.

That’s all I can think of that’s going on right now. Still blows my mind that he’s going to start hearing us in just two weeks. We’ll certainly be filming it, but aren’t expecting any insane reactions like the ones you see on Youtube. The way it’s generally done is that the sound is started at a low level so that it isn’t overwhelming, so a lot of times the audiologist will just look for very subtle signs that the patient is getting that signal and stop there for the time being. But we’ll see. I’ll be just as happy if it freaks him out, because we’ll still know it’s working.

Hopefully it’s all smooth sailing until then.

Post-Surgery

Shannon did an excellent job recapping the actual day of the surgery on her blog in terms of what happened. Overall, I was cautiously optimistic the morning-of that it was gonna happen. He didn’t have a cough, didn’t have a fever, and the visit to the pediatrician the day before had set my mind at SOME ease that, just maybe, his weird inhaling thing wasn’t something to be terrified of if it was just that, by itself.

Sort of sad to say, but the trip into the hospital, going to admissions, getting the security badge, and then waiting to be called into an exam room was so totally standard at that point that it wasn’t too scary. As Shannon wrote, we were both sort of operating the assumption that his surgery was going to be canceled anyhow. I started getting excited for the surgery after the nurse practioner ran a quick physical on him, especially after she took a look at his throat and confirmed that there was nothing going on there that could prevent any sort of issue for the breathing tube.

Our surgeon was great that day, though some of that might be because we didn’t have way too many questions for him to answer. When we saw him prior to the surgery, it was really just a “Yup, here we are, we know the score, let’s go” kind of thing. I was a little nervous when Shannon handed Alex over to one of the nurses for him to be taken off to surgery, but I think most of that came from a position of hoping that he was going to be implanted. I knew he was going to be alright, or at least I didn’t let myself think that he wasn’t going to be. That comfort level was almost certainly due to the fact that we’d already done this before.

The wait was the wait. Not much to discuss there. I had a sensation of being very humble; every time I noticed someone walk in and glanced up to see that it wasn’t our surgeon, I felt grateful.

When the nurse popped out to say that Alex had one side done… huge relief. Huge. So relieving that I think I was actually in shock, but the positive kind. Though he was only halfway done with his surgery, he now had enough to be able to hear. It hasn’t been until recently that cochlear implants are done bilaterally (one per ear), and we’ve seen plenty of cases where unilaterally implanted kids still had great speech. We were now strictly in bonus territory. He’s gonna hear on his birthday! For the holidays! I’ve been really excited for the holidays this year, especially since it felt like last year’s were basically destroyed by the news of Alex’s diagnosis.

When I first saw Alex after surgery, I actually thought he looked pretty good, considering. Again, a lot of that is probably just because I’ve already seen what he looked like with the bandage on one side of his head, so this wasn’t a huge shocker. He was a lot groggier than last time around because he was under for longer. Sabertooth stopping by and Christmas in July were pretty awesome. I’ve gotta remember to donate something next year, or at least for this coming Christmas. It meant a lot and, as much as I thought the movie was stupid, I’d like to pay it forward.

The hospital discharge was pretty standard. All I really remember from the drive home was focusing on the drive and trying to avoid big potholes. Though Shannon and I were both relieved, it was an odd sort of relieved, because even though Alex had his implants, he had also just had a major surgery. I think the real celebration is going to begin either during his activation or the first time he shows a sign that he heard something that’s softer than a jet engine going by.

That night he was just out of it. Sucked to see, but pretty typical. He gave us a tough two hours in the night, but that obviously wasn’t his fault. I think the thing he hated the most was that he could really roll on his head because of his Princess Leia bandages. Once we took those off (and thank god that the incisions looked good and that the implants weren’t incredibly obvious), I think he was able to get a little more comfortable.

It’s been relatively smooth sailing since. After he gets up from the evening or a nap, he usually needs his nose or ears cleaned up, but the amount of blood has definitely trailed off. It was very gratifying to give him a bath after the designated 48 hours had elapsed, and I got to once again wash the hospital off of him, hopefully for a long, long time.

The areas around his implants are still swollen; it’s tough to say what the “final product” is going to look like, but then again he has hair coming in. The next few weeks will be telling with regard to head shape. His eyes are much less puffy than they were. I’m guessing a few more days and those will be back to normal.

Most importantly, his smiley / laugh-y personality is just about at 100% again after three days. It was relieving to get him to smile and laugh at me again.

So really, the recovery hasn’t been all that horrible. I think we gave him Tylenol twice yesterday and that was it. Nothing so far today, though he did spit up a little bit of blood today. I had read that that’s to be expected, but called our surgeon to ensure that was the case and got the affirmative there. We’re told that it can go up until about a week, and if it happens again after that, we might want to call.

Alex had a visit from his speech therapist yesterday, who was very sweet about the surgery. It meant quite a bit to us that all of his teachers at Buffalo Hearing and Speech were so obviously concerned with how he was doing, even though they’ve probably seen these surgeries many times before. Alex is really in amazing hands there. We’re working on getting Alex to lipread, especially “up,” “bye,” “yes,” and “no.” I just ordered a Mr. Potatohead to use to point out nose / ears / eyes. I think I’m going to work on that a lot with him now, and hopefully that will help when he gets activated and both sees AND hears me say it to make that association between sound and things. I can’t believe he’s going to hear us in a month. Holy shit.

PT-wise, Alex is fine. Not even worried anymore. He’s crawling on his hands and knees now and is pulling up on things like it’s nothing. Boy, do I wish I could send a message back to myself and Shannon in March and say “HE’S FINE PHYSICALLY, WILL CRAWL BEFORE 11 MONTHS, HE DOESN’T HAVE USHERS, AND HE’LL GET HIS CIS.” We obviously still have a road in front of us; I’m already preparing for the infinite amount of times Shannon and I are going to wonder if that was a speech affect we just heard or if it’s just because the kid is x months old. In the meantime, those are some pretty serious victories.

The only other thing I can think of to comment on is that we’re about to start the process of requesting an FM system through early intervention. I get the impression that not too many families have one for their own personal use. I want one if not just for long car rides to Shannon’s mom’s house or to have handy for noisy environments. Taylor likes music and things that are noisy, so having an FM system to let her have those things while also making it easier for Alex to hear us would be a boon without having to take too much away from Taylor.

So, there we are. A lot happened in a very short amount of time. It’s nothing short of exhilarating to know that he’s going to hear the world around him in a month.

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.

The Day Before

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

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.

The Pre-Surgery Consultation

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.

Ear Tube Surgery

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.

Mission 6/6: Day Two

Actually went pretty well.

For whatever reason, the ENT called Shannon instead of me, but the news was still what we would call “good.” They finished submitting the pre-authorization on Wednesday to insurance, which is great. I had a weird feeling that was going to slip by a week or something.

More importantly, they told Shannon that they (meaning the office and the doctor) are completely planning on filing a petition. Since we didn’t know if the doctor would have any sort of issue doing that due to time constraints or prior experience, it was really relieving to hear that they’re on board with fighting to make Alex’s June date a reality. While on the phone, Shannon told the office that we had also reached out to our audiologist and were getting something from her for the appeal and asked if there was ANYTHING else we could be doing. The person on the line said “no,” but I think I’m going to start compiling that list of research demonstrating the benefits of early implantation. I’d LOVE if I could find something that would imply that BCBS could potentially save money down the road by going in early, but that’s probably a stretch goal.

Next steps are to find out about getting Alex’s ears drained out, but I’m almost afraid of doing that too early for fear that the fluid gets drained in the next few weeks, only to come back right in time for the surgery. We’ll see how that goes, but the most important thing right now is to know that we’ve successfully rallied the troops. Starting this Monday I’ll start hounding BCBS about getting the pre-authorization through whether it’s accepted or rejected, and I also need to ask about the appeals process.

Kid wants to hear.

Getting Ready to Go to War

Just before lunchtime yesterday, Shannon gave me a ring and asked me what the worst thing I could imagine happening right now would be. My heart immediately started racing and I started thinking that she had gotten a call back about the genetic testing or that Alex was somehow no longer eligible for CIs or something equally bad, but I asked her to just tell me what was up.

Our ENT called her and stated that our health insurance company, Blue Cross Blue Shield, had not only denied Alex’s June surgery pre-authorization (where the ENT / surgeon makes sure that health insurance is on board with a procedure before it happens), but had also stated that if we attempted to appeal it and lost that Alex wouldn’t be able to undergo the procedure until a year after the failed appeal.

I calmed down a bit from there because that information sounded completely odd. I’ve worked in health insurance before and even though I wasn’t processing claims, I worked closely with the people who do, and I’d never heard of that sort of punishment for failing an appeal. Shannon and I both believed that what was actually meant was that if we lost an appeal, that Alex wouldn’t be able to get his implants until HE turned one year old, which would make much more sense.

At the end of the phone call it was decided that I would call BCBS to get confirmation that our suspicions were correct about the one year figure and that Shannon would call our very helpful audiologist to get her take on the process and basically let her know that we’d be going for an appeal that she would likely end up contributing to.

It took me about a half hour to get my answers, but after getting off of the phone with BCBS, I had learned two important things.

  1. That Shannon and I were right about the one year thing, and
  2. That the pre-authorization was never formally denied.

Figuring out number one was the most important piece at this point, because it was basically expected that we’d have to appeal but not that there would be an awful punishment in place should that appeal fail.

Number two was also key to know because without a formal denial, there can’t be a formal appeal. I called our ENT and asked to set an appointment up with our doctor surgeon so that we could discuss the process of the appeal, ask him how these things generally know, etc. The nurse / administrator I was on the phone with was obviously trying to lean us away from that direction, which I was alright with as long as things kept moving. The most important thing at this point was to CONTINUE the pre-authorization that the ENT had stopped after BCBS called and said it likely wouldn’t be cleared. Before they called Shannon, they were getting ready to cancel Alex’s surgery date! Once they file the pre-auth, we’ll get the rejection which will list whatever objections the health insurance company has, and then an appeal gets sent back refuting that reasoning or demonstrating the medical necessity / benefit of doing something contrary to those reasons.

That’s all well and good, but we’re only about six weeks away from Alex’s scheduled surgery at this point, so this is going to require some crazy amounts of pushing.

We plan on talking to our audiologist who has put some of these appeals together before and see if she can draft a personal recommendation for Alex. I’m going to collect a list of all of the research from Google Scholar that covers the benefits of early implantation. We’re also going to ask our physical therapist if she can write something up formally about what she’s told us, which is that deaf children sometimes don’t develop physically quite as fast as their hearing peers because they can’t take advantage of auditory stimulus to, say, attract their attention in another direction or entice them to roll over. The ENT will also likely write something up about the low-risk of the operation itself.

Apparently the appeal process can take up to a month, but our hope is that given our surgery date and how common performing this procedure early is combined with our plans to call daily and ask for updates, that we can get this done in time… but it’ll be tight, and it’s going to require our ENT to be on top of things (we’re going to call them daily as well).

Shannon and I came up with this plan over another phone call about 45 minutes after she had first called me.  I hung up the phone, and then got another call. The ENT office again. They said that based on the MRI showing a bit of fluid in Alex’s middle ear and the results of a tympanogram test we had asked to be done, that they wanted Alex to see another ENT and have his ears drained since they have to be clear for the surgery. I immediately got on the phone with the ENT they pointed us to and asked to be put on the priority call list after explaining the situation, especially since they needed to do a consultation meeting first prior to a procedure, if it was deemed necessary. Again, we have six weeks for what’s probably going to be an ear tube procedure.

So the heat is on and the pressure is up, but we’re going to do everything that we can to get this done and get Alex his surgery in June. He’s ready, the benefits are obvious, and it would be a travesty if he lost a few months of hearing time because of red tape. The good news is that even if Alex had to wait for a year to get implanted, the results are still very favorable, but there’s really no advantage in waiting aside from the prospect of a better CI coming along in that time frame. The healthcare pushback is also a common thing, so it’s not as if we’re seeing something wild and crazy. I’d feel a lot better if we had another three or four weeks, but we’ll deal with it. It seems that booking time in the OR for these surgeries can be tough to schedule, so if we lose our June date, I’m not sure how far back that would push us, so it’s go time. Time to REALLY start going to bat for our boy.

MRI Results

Yesterday was another big day. We got our MRI results back and also went to the oral-deaf dinner, which was pretty cool. The latter deserves its own post so I’ll hold off on that for the moment and get to the test results.

I called our ENT’s office on Tuesday, the day after the MRI, just to let them know that we’d finished it and would love to know the results as soon as they roll in.  They recommended that we call back on Thursday, which was the same timeline the hospital gave us.

Thursday morning rolled around. I called at about 10am, and the receptionist I spoke to told me that the results were in, but the doctor didn’t have a chance to look at it yet. Argh! She made another note on our account saying that we had called again and said that the doctor would almost certainly be able to get back to us today.

At 1:30 or so, I got the call. I didn’t recognize the number, so I immediately picked it up, and I’m pretty sure my heart rate doubled in a span of three seconds. I was speaking to a nurse and not the doctor, so I got the short version, which is… Alex is completely eligible for cochlear implants. No issues with his anatomy, no catches, nothing weird going on except for some fluid around his inner ear, which the nurse was quick to say was likely just from a cold, which Alex has. It was, maybe, a thirty second conversation.

So, there it is. Alex is cleared, and he is going to hear. We can stop saying “if Alex is eligible” every time I mention CIs. We don’t have to do any more research on brain-stem implants or worry that we’re getting ourselves too psyched up at watching what kids with CIs can’t NOT do, etc. I’m still not sure if I’m in shock or not, but I know for sure that I’m greatly relieved. The chances of him not being eligible were always slim, but the stakes were really high.

So with that huge, massive, gigantic breath of relief, we’re going to have a surgery coming up in June. I think our next steps are to have another appointment with the ENT (if they don’t call me in the next week, I’ll be calling them) to talk about the procedure and I also want to make sure that health insurance is lined up, pre-approved, etc. Our health insurance was really good about approving his extended genetic testing as well as his MRI, so the track record is good so far. This, however, is a 150k cost. Hopefully they’ll play the game the same way and Alex will be hearing us in July.

I feel like we can start enjoying life just a little bit more again.