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.

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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.

The Ear Tube Consultation

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.

Mission 6/6: Part 3

I’ve gotta say, I’m actually relatively happy with how things have been moving up to this point.

Yesterday I called up the ENT to see if they had gotten a response back from BCBS in the form of a denied pre-authorization. Shannon called BCBS directly a few hours later. It turns out that it was a good thing that I had called, because even though they had sent everything in, BCBS wasn’t going to process it because of the initial “stop” that the ENT’s office put on the pre-authorization when they were incorrectly told that any failed appeal would tack an entire year onto Alex getting his implants.  So when the ENT called the insurance company to get a status, they were able to hammer that out and make sure it WAS being processed.  We’ve been told that will take something to the tune of 72 hours to turn around, so basically this Thursday. Additionally, we were told that the ENT actually sent in material explaining why we wanted to go in early.

Good things taken from that:

  1. It validates our strategy of calling over and over.
  2. The ENT didn’t just tell us “We haven’t gotten a response yet,” they followed up with BCBS and actually got a status and fixed the issue themselves rather than waiting for us.
  3. The ENT is ALREADY sending in the information on why we’re trying to get Alex implanted early instead of just waiting for the denial.

I’m probably saying this too early, but I’ve been impressed and grateful for the proactivity of our little team. Our audiologist sent us her drafted recommendation to be sent in for any appeal process after she integrated the verbage “medical necessity” at our request, and even asked if we wanted to make any changes or tweaks.

These might all seem like small kindnesses, but they really do add up, and in the healthcare industry where you’re asking for someone to go the extra mile for you, it’s nothing short of great service.

Shannon and I have a very small hope that the pre-authorization will actually be accepted based off of what the ENT sent in as well as just looking at the calls that we’ve made in the past week. The logic would be that given what we’ve already done, they’ve gotta know that we’re going to appeal vigorously, so maybe it’s worth accepting it now and losing whatever administrative costs and headaches would be associated with the appeals process? It’s a very small hope, because at the end of the day, we’re talking about insurance. They’re going to put up whatever walls they can to see if we just lose interest, but maybe they’ll weigh that against the appeals process we WILL put them through.

On the ear tube front, Alex has an appointment for next week. It’s just an office visit, so no procedure will actually take place, but the good news is that we’d still have all of May to get the procedure done. I asked the office person I was speaking with if she could make note that we need to have the procedure done prior to June, and she said that that note was already on our case, but she’d put it in again. Obviously when we go in, we’ll make note of that yet again and be as nice about it as possible.

I think that’s about it for now. Probably more to come on Friday.

In other news, Alex has made some pretty good strides lately in the physical development arena. He’s sitting up on his own for longer and longer periods of time, and he’s now rolling from back to belly. We’re hoping that means crawling soon-ish. Alex has a physical therapy appointment tomorrow. We’re hoping to ask the therapist if she might be able to write something up about the benefits of to Alex’s physical development if he has a sense of hearing earlier than later. I also want to ask her about Alex’s balance again and make sure that he’s doing well on that front. I did more googling about Usher Syndrome (where you’re born deaf or hard of hearing and slowly go blind) and balance issues are often associated with it early on. Alex is doing DECENTLY sitting up and once did it on his own for a good nine minutes, but I’d like that reassurance if we can get it that his balance is in good-ish shape. We’ll get confirmation once his extended genetic results roll in, but we still have weeks to go for that.

Now that I think of it, we also have an appointment with our teacher of the deaf tomorrow as well – I’ll probably ask her if there’s anything she can write up, though I’m not sure what that would really look like. Won’t hurt to try.

That’s a wrap for now.

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.