cochlear implants

Post-Surgery

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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.

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Mission 6/6: Day Two

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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

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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.

Hearing Aid Update

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Things are thankfully starting to pick up again, in fact so quickly that I’ll have to divide up all of the updates into a few separate posts.

Alex still doesn’t have his hearing aids yet, but we aren’t stressing out quite as much about it anymore because we learned a bit more about the timeline. If Alex is eligible for CIs, we’re going to go for it. The FDA, however, has a requirement that any potential CI candidate use hearing aids for six months to ensure that they can’t get any benefit prior to implantation. When we met with our ENT a few months back, he told us that the earliest he had implanted was nine months. We’ve done enough research to know the importance of getting implanted as early as possible, so given that, we want to shoot for that nine month mark as long as Alex’s age doesn’t increase the risk of the surgery. Of course, he’s four and a half months old right now, so even if he had his hearing aids today, the earliest he’d be able to get implanted would be ten and a half months, with actual activation (when the CIs are actually turned on) not happening for three to four weeks after THAT. I get that that extra month and a half probably doesn’t sound like that much time, but it’s literally forty-five more days of hearing experience that Alex would miss out on when his brain is trying to soak up as much as possible. There’s also the angle that we’d be twiddling our thumbs around during those 45 days while absolutely nothing happened.  Shudder.

It turns out, however, that Alex’s profound hearing loss actually helps him out in this regard. We learned from Alex’s speech therapist (more to come on meeting her and Alex’s teacher of the deaf) that the six month time frame from the FDA can be easily petitioned, it isn’t hard-set, and it’s often shortened in cases such as Alex’s where it’s fairly obvious that hearing aids won’t get the job done. Phew. We’re still disappointed that Alex didn’t get his hearing aids earlier, but unless unless he isn’t eligible to receive them, cochlear implants are the end-game anyhow.

More on the hearing aids, though – we’ll (finally!) be receiving them in the next few weeks. The last holdup was getting approval from the Early Intervention program (so really, the county) to pay for them. He’ll need to get re-fitted since his last fitting was back in December and he’s a fast-growing baby, but we’re tackling that this week.

I have some mixed feelings on putting the hearing aids onto Alex. There’s a part of me that’s going to hate putting them on him the first time, because I think in some way his deafness will become all the more real. I’m naturally biased, but I think the kid’s adorable. It sucks to know that he’s going to have to wear these, and further down the road, the even bulkier CIs. The techy side of me immediately wants to step in and say “It’s temporary, no sweat!” which makes me feel slightly better about the long-game, but until we have that fully-internal tech or that biological fix, he’s going to have that apparatus visible. It’s not fair to him.

Overwhelmingly, though, I’m excited to get started. We don’t anticipate that Alex will suddenly be able to pick up on more sound than he is now, but we’ll be making progress. He’ll be getting used to having stuff on his ears, we’ll be getting used to him having stuff on his ears and chasing it down / replacing it / playing with the settings / charging batteries etc. It’s step one to bringing some sound into his world, and I completely embrace that.

More to come on his hearing aids, and I still need to write about our initial appointments with Alex’s teacher of the deaf and speech therapist.