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The Ear Tube Consultation

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Playing a little catch up here after a busy week.

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

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

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

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

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

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

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

General Early Intervention Status

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I thought I’d write about how all of our early intervention stuff has been going, just to give an idea of what it’s been like. Our focus had definitely been on getting the health insurance on board with the June date, so writing about these sort of fell by the wayside.

I guess the first thing to say here is that they don’t feel terribly inconvenient or time-obtrusive. I was worried about that when we first set out, but it really hasn’t been too bad. A lot of that is probably because I have a relatively flexible work schedule and our therapists have been awesome about coming either first thing in the morning or after I already get home, so even though we typically have one or two therapy sessions a week, they basically just eat up home-time, so no big deal. And of course, we’re always interested in picking their brains about what they’re looking for, what else we can be doing with Alex, bounce questions… so yeah. Even though I cringed when I had first read about having appointments all of the time, I’m pretty happy to say at this point that it hasn’t really been a big deal overall. All of our therapists are awesome and we welcome all of their help and experience.

Breaking it down…

 

Physical Therapy:

We’re still doing PT once a month. They go for about an hour. Our PT generally starts by asking us if we have any concerns, which we almost have. Once you have a kid who has one disability / issue / whatever you want to call it, everything that you would’ve otherwise written off as him just being a weirdo or taking his time becomes something new to worry about and research. So, as a result, whenever our PT asks us that question, we usually have something for her. Luckily, Alex has been doing well, in general. His balance is solid, he’s sitting up for decent pieces of time, etc.

After the PT finishes up “testing” for whatever concerns we had, which she explains in great detail, she takes Alex through the paces for everything we didn’t ask about and asks questions, usually in the form of “Has he done x yet?” An important thing she told me during our last PT session that probably would’ve saved me some stress if I had known it before – when you see PT guidelines like “Can sit up without support for 30 seconds,” they mean “Has demonstrated that he can sit up for 30 seconds” and not “consistently sits up for 30 seconds.”

After that, she goes through what she’ll be looking for at next month’s appointment and shows us exercises that we can work on with him to help push him along the path. The mantra remains to give him enough of a push that he can succeed but as little as necessary to make sure he’s working for it.

Once we get toward the end of our time, she writes down all of the exercises that we should be working on with him, and that’s that. She always tells us that we should feel free to text / call her with any questions, and she’s been great in that regard. We’ve only used that once when we were really concerned, and she got back to us very quickly.

Once Alex hits ten months of age or so and things really start picking up with crawling / walking, we might bump our appointments up to an every other week type thing. Our time with our PT is always very educational and often calming, so at this point I have no issue with doing that to make sure that Alex keeps pushing forward. But overall, he’s been pretty solid in the PT department. He’s not as far along as his older sister Taylor was, but he’s not showing anything that concerns our PT. So far, so good.

 

Teacher of the Deaf:

These are every other week and only go for about a half hour. Because our TOD actually works at the deaf-oral school Alex will be going, our sessions generally started as a “here’s what’s going to happen once he gets implanted and once he starts going to school” type thing. I think she wasn’t expecting us to have researched as much as we had in advance – we’ve gotten that a few times. Anyhow, the past three or four of our meetings have followed the same pattern. The TOD brings a bag of toys with her and works on getting Alex interested in one toy at a time. The toy generally “does something” – i.e., it’ll be a ball that has a button which causes it to light up, or a car that she’ll drive up to his face, but the idea is that there’s an action associated with the toy. Her goal has been to get Alex to make eye contact to signify that he wants that action to happen to. He’s been great in this area. When Shannon and I feed him solids, most of the time we won’t give him his next spoonful of food until he makes that eye contact, so he’s used to this. I have a feeling these meetings are going to pick up after he gets his implants, which I’m excited for, because right now Alex isn’t really being pushed. That’s not necessarily a bad thing, because we’re both grateful that he’s nailing the eye contact thing, but it’s going to be really cool when we can start having him use his new ears to vocalize to get those toys to move or whatever the next step ends up being.

 

Speech Therapist:

The speech therapist’s visits are pretty familiar to the TOD’s at this point. She comes every other week for a half hour.  She usually first asks us how Alex is doing with his hearing aids, whether or not we see him reacting to any sound, and if we’re having any issues with keeping them on his ears. After the quick status update she starts working with Alex. Like the TOD, she also brings toys, but they’re various animals. She works on getting Alex to make eye contact and then making the animal sound (“A doggy says woof woof woof”). Again, not really too much happens here. Alex watches intently, but you can tell that he’s not going to really maximize his value here until he gets his CIs. We’re really looking forward to his speech therapy sessions as one of the goals we have for Alex is to get him talking as early as possible and hopefully work on any affect he might start out with.

So there it is. We’re getting excited to REALLY get Alex going in a few months and teach him how to use his new ears and we’re thrilled with the supporting cast around us.

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.

The Oral-Deaf Dinner and other General Updates

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Finally getting around to this.

The day we had our dinner was the same day that we found out that Alex was going to be eligible for CIs. That was a pretty huge boost, so we walked in feeling pretty good.

The event itself was held in the basement of the building, so we got a quick look at some of the classrooms / playrooms that were setup.  Dinner was catered by a popular local restaurant. We sat down front and center and met with two other couples with hard of hearing kids. I can’t think of any remarkable conversations we had there, except that one of the couples knew in advance that it was going to be a near-certainty that their child would have hearing loss due to genetics (the mother wore hearing aids). That didn’t stop them, which is no surprise, but I thought that was sort of an interesting dynamic. Also nice – we got some good face time in with the administrator of the program, who is the same sweet woman who was kind enough to physically meet with us and tell us about the oral deaf school months back. We also saw our teacher of the deaf, speech therapist, and audiologist. Definitely feel blessed to have that kind of supporting cast who all work together.

The actual discussion was setup as a Q and A with four kids sitting at the head table.  One of the kids got a little shy and jetted out of the table, leaving three kids; one unilateral CI boy (I want to say he was about 9) and two twin girls (I think 11 or 12, but I’m sure my wife will correct me on this). One of the girls used two hearing aids, one used one hearing aid and a cochlear implant. I think they all started off with a quick introduction. Once they got to the boy with the CI, I definitely perked up, because this would be the first time we’d hear speech from a CI graduate of our boy’s future school.

And it was perfect. No affect detectable.

Now, his little boy did just give off a very quick and smart-alec remark, but it was enough to get a sense for how good his speech was. It was pretty cool to hear. He only had one implant, too! The downside to his smart-alec remark is that the crowd gave him a pretty big laugh, which guaranteed that every other answer he gave from there on out would be a one or two word deal looking for the same response, but that was sort of cool in itself. He’s a little boy, acting like a little boy.

The girls were pretty amazing. They had speech affects, but I didn’t really notice after two or three sentences. Great self-advocating, they explained that they were both great students, the works. Two very inspirational young ladies that definitely showed off a maturity beyond their age.

Throughout the talk I was amazed that these three kids were functionally deaf, yet here they were, hearing all of our questions without a hitch, talking about their experiences going to mainstream schools, etc. It all seemed amazing to me, and made me feel even more hopeful for Alex given that he’s going to go through the same program, but with another ten years worth of experience and another ten years worth of technology advances at his disposal.

I can’t think of too many answers that were given that really stuck out as interesting, but that’s probably because I’d already done lots of research so I was able to anticipate a lot of the answers. One of the topics that stuck for about 15 minutes was FM systems (an FM system is basically a wireless microphone that you give to a teacher / speaker / whatever that sends their voice directly into “listening” cochlear implants or hearing aids). It was a good conversation about how it’s important to keep them on and the struggles to maintain them, but it got a little long-winded given that most of the audience members wouldn’t have to deal with them for at least another five years or so. Sports was another conversation that went on for a bit and it went into some of the challenges CI users have there (helmets, waterproofing, hearing in loud environments, etc), but my takeaway was that it’s all absolutely doable with a little extra work. No problem, we’ll do extra work. The kids talked a bit about how they’d get pulled out of their regular classes occasionally for special speech therapy and things of that nature. That was a SLIGHT bummer to hear about because it’s another thing that’s going to broadcast to Alex’s peers that he’s different, but again… we’ll deal with it, just like these kids and their parents did and do.

Overall, I didn’t see anything really too surprising, but to see the kids in person was pretty inspirational and I liked seeing how the teachers interacted with the kids. You could tell that they had formed some pretty deep bonds.

I think that about covers it.

Nothing too new going on at the moment outside of that. I have to call our ENT and see what’s what in terms of making sure that our insurance is lined up and what they’ll cover – I just read on our Facebook group that many insurance companies will cover TWO speech processors per ear so that there’s always a backup, that’d be nice! We always have a close eye on Alex’s PT. He still likes to bob around, but as he continues to demonstrate that he can hold himself up in a sitting position firmly, it makes the bobbing look more like him saying “I don’t want to be held like this right now” vs. a physical issue. Regardless, it’s something we want to continue to stay on top of.

The genetic testing results still make me nervous when I think about them, even though we apparently won’t have those in hand for another month or two. Just really hoping that his deafness is all we have to deal with and worry about.

Past that, life is actually sort of normal. Alex still wears his hearing aids all the time even though we keep them off most of the time because of the incessant whistling, but he does great in NOT swatting them off. Hopefully that trend continues on and we get lucky enough that he doesn’t hate his CIs, because once he has those, they are staying the hell on. We’re going to take advantage of every minute of hearing time that we can early on and get this kid going.

Something we’re starting to investigate now is getting an FM system that we can use with Alex that we would own – most parents don’t have one because they’re typically only used at schools, but I’d love to have it for louder environments, long car rides, that sort of thing.

We still have early intervention appointments frequently, but they’re starting to feel routine and just slight pains in the ass rather than an invasion of our lives.

We’re still constantly concerned about Alex and his future, but it feels like things are starting to normalize just a little bit.

MRI Results

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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.

Six Waiting Rooms and an MRI

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Alex had a big date yesterday with an MRI machine.

Quick recap.  The purpose of the MRI appointment is to ensure that the anatomy of the cochlea / nerve is compatible with cochlear implants. If there isn’t a nerve present at all, the implants have nothing to interface with, and therefore that person isn’t a candidate for cochlear implants. The chances of this happening, from what I’ve read, are pretty low, but it’s still the big gateway to get green-lit for CIs.

The MRI for a scan like this takes roughly one hour to complete. During the scan, the subject is sedated to ensure there’s no movement and placed on a table that eventually gets sucked into a massive electromagnet. The interactions between the person’s body and the magnetism drives the imaging. Unlike a CT scan, MRIs don’t use radiation, and there are no known side effects of MRI scans (phew). Once the imaging is complete, the results are checked out by a technician and then forwarded over to the ordering doctor (in this case, our ENT). At least at our hospital, that’s supposed to take about two days.

So that’s the procedure in a nutshell. Here was our actual experience, super-detailed in case we ever decide in the future to share specific hospital names or meet people in the area who are going to go to the same places we are:

A few weeks ago, we received some paperwork from the hospital indicating that Alex’s appointment was to begin at 10:45, but we were supposed to arrive at admissions at 8:30. He wasn’t supposed to eat any food / milk starting at some ridiculous time. I want to say it was midnight. So… a six month old baby, not having eaten for 8 hours, arriving at admissions, and then having to wait for almost three hours until the appointment begins? Didn’t exactly paint a pretty picture. Shannon called and the nurses explained that Alex could actually have formula / breastmilk at 4am, and could have a clear liquid up to four hours prior to the appointment (so something like 6:30). That was much more reasonable, so we had our plan.

Shannon and I were both pretty nervous about this appointment because of the consequences it could have as well as the fact that our baby was going to be anesthetized, but luckily we were still coming off of that great physical therapy meeting and we had a pretty fun weekend to boot. It was always on the back of our minds, though.

Yesterday morning, we followed the plan and filled Alex up with as much food as we could as late into the game as possible to hopefully keep him happy. He slept for a little bit on the car ride in. Of course, we hit a minor traffic jam to drive up our anxiety levels just a little bit more, but we still arrived on time.

First stop was admissions. They printed off an ankle bracelet for Alex and threw it on him. No lines or waiting there, which was nice. The lady who took care of us sent us over to the security desk to get passes and told us to head up to the pediatric same-day surgery admission area. Security took about two minutes (no line again).

We headed upstairs to the surgery admission area. This was one of the roughest parts of the day for me. First of all, this is an old hospital. A replacement is being built and everyone will be shipped over to the new place in two or three years, but it’s just a dreary, old building. The area we walked into was basically a narrow corridor with seating on both sides and old floors, windows, etc. I realize I sound like somewhat of a snob here, but when you’re bringing your kid in for a procedure, it’s preferable to not get the feeling that he’s going to be getting 1970s-era technology in 2014.

More sad, though, was the other parents and kids. You could see the look of anxiety on the faces of everyone present. Some of the kids looked scared. One poor little boy had a trach installed (a tube in the throat that he breathes out of). Very handsome little guy, too. Just very sad to see so many innocent little kids affected with issues that they didn’t deserve. Brought me down a bit.

At this point, it was about 8:45 / 9:00, and our appointment wasn’t until 10:45. We were afraid that we’d be sitting in that room for another two hours. Luckily, Alex’s name was called after about twenty minutes. We were taken back and a nurse gave him the basic pediatrician’s checkup – she measured him, weighed him, checked out ears and eyes, etc. We got him out of his pajamas and into peach scrubs, which he rocked. She also went through the usual hospital questions around allergies, reactions to anesthesia, past surgeries. As she was finishing up another nurse came in and asked the same questions. My crappy memory isn’t telling me what the difference between nurse two and nurse one was. I think nurse two was associated more with the MRI folks whereas nurse one just did the general measurement thing all day long for anyone going through that same-day surgery department. Anyhow, once she finished up, we were sent to another waiting room.

Waiting room #2 was way, way better than #1. First of all, it wasn’t packed. Second, it didn’t look old and decrepit. Third, it had a TV going, and they even had video game carts where you could play Wii if you wanted. I thought that was a really nice touch to help distract kids who were about to undergo something scary. We stayed in that room for something like a half hour. Alex started to get fussy at this point to the point where Shannon and I had to take turns walking him around, but that calmed him down and we never hit an outright-screaming phase with him. A… guy (not sure if he was a nurse or not) came to the room to get us. We followed him into an elevator, where he took us down to where the MRI was. We were deposited into waiting room #3, which we had to ourselves. Alex was actually crying at this point, but Shannon pulled out her elite mommy skills and calmed him down, just about to the point of sleep. A nurse pulled us out of waiting room #3 to place us into waiting room #4.

Waiting room #4 was only about fifty feet from waiting room #3. Waiting room #4 was basically the consultation room; Alex’s last stop before hitting the MRI across the hallway. An anesthesiologist knocked on the door after about ten minutes and explained that Alex would be put under by first getting gas, then an IV. A tube would be placed partially down his throat to administer fluids if need be. Shannon and I had both been hoping that Alex would only need gas (the poor kid has been poked with needles way too much for a six month old), but we were assured that he’d be back up to normal by the next morning. He also said that the procedure would take something around an hour, and strangely asked if they were doing a brain scan, as if we were driving what they were going to do instead of what our ENT had ordered. I’m pretty sure that he was just looking for confirmation, but I certainly hope that that if we had said “full body” he would’ve raised an eyebrow. A few minutes later, they came for Alex, who was asleep at this point in his mom’s arms.

After leaving our keys / metal stuff in the waiting room, we walked across the hall and into the room hosting the MRI machine, which is pretty large and impressive. The thought briefly occurred to me that Alex was about to take advantage of a technology that wasn’t widespread twenty years ago and what sort of things he’d be able to take advantage of in the future.

We laid Alex down on a table and the anesthesiologist almost immediately placed a little gas mask over his nose and mouth (even with the binky still on). This was the toughest part. Our little guy was pretty combative and squirmy, probably from a mix of being woken up and having a mask placed over his face while being held down. Even though I knew that the MRI itself was harmless, seeing your kid get put under is a scary and emotional thing. I’d guess it took about thirty seconds for Alex to relax and close his eyes. We were shuffled out of the room and shown waiting room #5, but opted to go to the cafeteria and grab a mediocre lunch.

We were both obviously concerned, but I found a certain peace in knowing that the MRI procedure was no longer looming over us – he was getting it done, right now, working on putting it behind him and us. Despite seeing Alex put under, Shannon held herself together very well. We joked about how we hoped Alex would only have to go through three more procedures; implantation (first implants), re-implantation (fully internal implants), and ex-plantation (biological cure).

After lunch, we headed back up to the waiting room. They ran almost a half hour later than they said it would take. I’m not sure if that was because the hour figure was based solely around the MRI scan or if it included the anesthesia process as well, but it was scary when they were over fifteen minutes late. I had just walked out of the room to try to see what was going on when a nurse popped in looking for Alex’s parents. Shannon went in (only one parent can go in post-anesthesia, oddly). I didn’t hear anything back for about ten minutes, so I anxiously texted her. After a second text, she responded that everything was alright. A few minutes after that, she popped out with Alex, who looked groggy. Shannon explained that he was a little monster when he first woke up, and it took a lot to get him calmed down. I didn’t see it so I can’t really comment on it too much more, but it definitely sounded like it was pretty rough going for the little guy. Nevertheless, I was happy to see that he was calmed down with his mommy in the present.

We headed back up to waiting room #6, which was in the same area as waiting room #2, and were finally able to give him a big formula bottle. He was a little bit slow to take it. You could tell that his throat was bothering him a little bit. Shannon likened it to a bad cottonmouth, which seemed dead-on to me after seeing him. Anyhow, the idea of waiting room #6 (which was a check-up room) is that the nurses would take Alex’s vitals again and monitor him for a half-hour to hour, and if everything looks good, release us. Sure enough, we were let out at about 2:15.

It was a very, very tiring experience. I’m sure the majority of it was from the anxiety we felt. Alex took a huge nap when we got home, and when he woke up, seemed to be about his normal self. I gave him a bath to wash the hospital off of him and we had a pretty normal evening with him, complete with some tummy time and physical therapy. Felt very good to bring him home, and made me appreciative that, if Alex gets them, that he’d likely be home again the day he goes in for his CI surgery.

At some point before lunch today I’m going to be calling our ENT’s office to ask how long it would take to get the results back, and when they roll in, to PLEASE let us know as soon as possible. They likely won’t be in until tomorrow or so, but I want them to know that we are actively looking for this and are going to be a pain in the ass until we find out what’s up. I’m somewhat concerned about the extra amount of time that the MRI may or may not have taken. I have dark visions of the MRI operators saying “What’s this? Where’s that?  Zoom in.” sort of stuff. We’ll see.

As nervous as I am about the results, I’m still happy that the MRI is at least DONE. It was a big milestone and it’s behind us now, and even if the results come back and they’re not great, it’s still a step in the journey that we had to take and it’s been taken.

We have a dinner on Thursday with the oral-deaf school Alex will hopefully be attending. We’re hoping beyond hope that we’ll get good news prior to that and be able to look forward to the sort of things we suspect we’re going to see and the stories we suspect we’re going to hear at that dinner.

Done. Good results, please.  PLEASE.

Physical Therapy Update

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Just wanted to throw up a quick note about the PT appointment we just had last night that we were worried about – it went great.

Our therapist came over and immediately noticed that Alex’s head-lean was much improved from when she had last seen him in February. She opened the session by asking if we had any questions or concerns, which we obviously did. She took a look at his head control and his muscle tone, and to our great relief, she said she didn’t see any issues with him. Hell, she didn’t even say that he was behind. He sat up very well and held it for about a full minute, which is what she was looking for.

Basically, he kicked ass. We asked specifically about seeing anything that remotely resembled Cerebral Palsy and she couldn’t find anything, and in fact she saw Alex doing things that would be contradictory to CP symptoms – the biggies were Alex’s muscle tone and the fact that he moves his limbs independently. It was a great relief to hear all of that.

I feel the need to write that our physical therapist is pretty awesome. She’s very well-spoken and clearly educated, and she also has a good bedside manner. When we told her what we were worried about, you could tell that she got it, that she understood our concerns, and that she was going to take the time to put our minds at ease as much as possible rather than just blowing it off with a “Nah, don’t worry about it.” She even told us about her own experience with one of her sons who had a low APGAR score and how she completely understood being scared of milestones and constantly wondering what sort of horrors were going to manifest. It’s nice to know that she could relate.

Alex isn’t PERFECT physically, and we have one or two things to work on, but our therapist assured us that these weren’t neurological issues, just bad habits that we’d want to correct early to help ensure that he’s going to keep up with his development. No problem. We’ll work on it.

Physical therapy was the biggy yesterday, but while I’m at it I’ll also bring up the audiology appointment we had yesterday. It was a very straightforward one. We came in, Alex’s ear molds were changed out to the new ones, and that was essentially it. Our next appointment is in April and we’ll actually be in a soundbooth to test Alex’s testing with his hearing aids. That’ll be interesting, but our expectations are really low. We doubt he’ll respond to much, and that doesn’t matter since CIs are such a different beast that his performance with the hearing aids will have no bearing on what he’ll get out of his CIs (little aside – a poster on our Facebook group showed a before and after audiogram of her child, who went from 100db loss to 10db, which is basically the difference between a jet flying by and something quieter than leafs rustling.  Amazing.).

Very relieving to have a good PT session yesterday. Now for the biggy, the MRI on Monday…

Busy Week Coming…

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It’s been a little while since I’ve written anything, so I figured I’d put a few updates out.

As the title says, we’ve got a lot of appointments coming up. Tomorrow at 3:15, I’m taking Alex to the audiologist. She’ll probably just give Alex new ear molds (his current ones are laughably too small) and MAYBE will do a sound booth test to see if he’s getting any sort of benefit from them. Zero hopes there, but that’s alright. Almost immediately after that meeting I’m going to have to run home so I can get him home in time for his physical therapy meeting. This one is kind of a big deal. We had a checkup appointment with Alex’s pediatrician, and when asked, he noted that Alex was a little bit behind physically. He didn’t think it was much, and he grounded us by making the statement that only 50% of kids are ahead of the curve, so it’s nothing to really be terrified about. Alex’s physical development is definitely something we want to make sure he stays on top of, though. Even though I don’t really think he has something like Cerebral Palsy, it’s still something I’m scared of. Alex still likes to fling his torso back sometimes, and we can’t tell for certain if that’s just a trick that he’s learned or if it’s reflux or if it’s something else. His neck control still isn’t perfect, but it’s been steadily improving. He can grab things with both hands pretty easily. He can stand up with support (i.e., his legs stiffen as they should). He hasn’t completely mastered tummy time yet, but I blame myself for that quite a bit since I basically tried to skip over that and put him right into sitting-up time (which he’s getting increasingly better at!).

Regardless of the things that he’s doing well, it’s tough not to fixate and worry on the stuff he isn’t, so we’re really looking forward to this next PT appointment so we can ask some pointed questions. We get that he’s behind on some stuff, but should we really be worried? Have you seen CP babies and did they look like this? What about other physical issues? The PT side of things is definitely something that’s weighing heavy, especially with Shannon who’s literally losing sleep over it, so we’re really hoping to hear some reassuring things tomorrow and keep plugging away.

Thursday morning we’re meeting with Alex’s teacher of the deaf. Not expecting anything crazy there, and I can’t really think of what we’ll be discussing. Nevertheless, we’re both fans of her, so I’m looking forward to talking with her and asking questions if anything interesting comes up. I’m somewhat dreading Friday. Around lunchtime, I’ll be taking Alex to get another blood draw for his next genetics test. We got the formalized results back, and they just tested for a single gene. The next round is going to be testing for 20-something different things. I have a feeling they’ll come back negative as well, but we’ll see. We won’t get those results back until after June, when Alex will have (hopefully) been implanted. He was an absolute champ at his last blood draw – no crying or anything, and he had a lot of swooning Quest employees “ooh”ing and “awh”ing over him. I hope he’s as awesome on Friday as he was last time around, but I won’t blame the little guy if he puts up a pout.

Monday is Alex’s MRI, which is the really scary one. The results of this test will determine if Alex is eligible for CIs and might give an indicator as to how compatible his anatomy is with them. It’s apparently very rare for patients to not be compatible, and when they are, a big reason for that is a missing auditory nerve. Alex’s can’t be missing because he can still hear very loud noises. It’s all of SOME comfort, but once you “win” the lottery once, optimistic chances don’t give me as much comfort as they used to.

For the MRI, Alex will require some form of sedation to make sure he stays still for the machine. It will most likely be administered by gas, and I remember reading somewhere that it could just be a very light form of sedation (like a sleeping aid). It sucks regardless. On top of that, Alex isn’t supposed to eat anything from midnight until when his MRI begins at 10:45. Seriously? Our six month old is going to be starving. Not pissed, starving. That’s really not going to help to tone down the stress of the whole event. It’s going to suck, but we’re just going to take it one minute at a time, get it done, and hope that we get back the results that we’re hoping for a few days after.

A lot happening. My hope at this point is that he has a quality physical therapy session that puts our minds at ease and that his MRI results come back quickly and that they’re encouraging. If those two things happen, it should be relatively smooth sailing until we come up on the surgery and genetic testing results. It would be nice if some of the stress dropped for a while, especially with spring and the promise of warmer days around the corner. Seems sort of symbolic when I think about it; it’s been a rough fall / winter, and we’re ready for some good news and a break.

A Little Optimism

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This is a short one, but was ready for something a little more uplifting after my last entry.

I’ve spent a good chunk of my lunch break on Google looking up my favorite topic, hearing loss. Typically when I hunt around, it’s for news on the cochlear implant, but today I decided to look a little more broadly, so I searched around for “Deaf cure.”  I apologize in advance if you take personal offense to the combination of those two words, but it’s a popular search term. Also, you probably shouldn’t be reading this blog.

The results of the search were pretty cool. Just about everything I read was recent or semi-recent, and all projections were that a flat-out biological fix for dead hair cells, the most common cause for deafness by a landslide, were roughly ten or so years away. These weren’t written by over-optimistic bloggers like me, they were from real organizations and real studies performed that have traction.

This isn’t anything I’m going to cling to for dear life, but wow – if that comes to fruition and Alex has his biological hearing before he even hits his teens, no strings attached, no equipment… just an incredible thought. It sounds incredibly too good to be true, but it’s already happened before with Polio, measles, smallpox.

My favorite bit from a scientist who’s working at a solution using stem cells: “I do know when I see a baby right now who hasn’t any hearing whatsoever, probably in her lifetime, [she] will have regenerate therapy available for her.”

Yes, please.

First Round of Genetics Results Are In

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Shannon already did an awesome job giving a recap of this over at her blog, so I’m not going to re-write what she’s already succinctly done.

I had been calling the genetics office looking for Alex’s results since they were running a bit overdue, but somehow Shannon got the call. She got the news and then called me. I missed her first call because I was doing something with the kids and couldn’t get to the phone in time, but then I also heard my Google Chat starting to blow up. Right then, I felt pretty confident that it was Shannon telling me she had heard from the genetics department. A rush of adrenaline hit me almost immediately.

I called Shannon back and she told me the news – it isn’t Connexin 26. My heart sank. As Shannon mentioned in her blog, Connexin 26 doesn’t come with any other catches other than deafness, so this felt like a “good” option was suddenly taken off of the table, even though I was assuming it wasn’t Connexin 26 anyhow.

We’ll be doing another round of genetic testing, which means another blood draw and more fearful, adrenaline-filled moments. I’m pretty scared of what can come out of that. Shannon already mentioned the biggy, which is Usher Syndrome. I’ve done a lot of research into that particular disorder and, as with deafness, there are at least two very good things coming down the road for blindness. One is that there are very promising looking gene therapies (plural!) that are actually in human testing right now that would halt the progressive blindness. A few of them are corrective as well.  Beside those fixes, if all else fails, a new bionic eye which is coming to the US very soon.

Regardless of all of that, I definitely hit a slump when Shannon told me the news, but she also managed to pick me right back up that night when we talked about it a bit more. She and I both feel that it isn’t Usher, and even if it is, the good news is that it usually doesn’t start to take vision until roughly ten years of age, and that age range can be pushed back by a few more years if a lot of vitamin A is taken. That gives about fifteen years for the gene therapy or something better to come along. The prospect is still TERRIFYING, of course, but knowing that it isn’t necessarily a foregone conclusion that our poor boy would be both deaf AND blind would at least give some real hope. I hope we never have to worry about anything like that, but I was happy to see that sort of help on the way for those who do.

I moved slightly off-topic there – Shannon picked me up by saying something that resonated, and that’s that she feels that the antibiotic that was given to Alex during his time at the NICU was what took his hearing. It’s a bittersweet thing to consider, if true, especially since Alex didn’t have an infection at the time. I find myself almost hoping that that’s the cause of it because the “only” other thing that sometimes accompanies the hearing loss is vestibular issues, but as Shannon pointed out, Alex seems to be developing physically at a good rate. I feel that he doesn’t have any major issues there, but that could also be wishful thinking given how young he is. I could certainly see how it would be difficult to make that determination until Alex hits, say, a year, where balance should be mastered.

Under that scenario, I’ve also thought about how it would be ironic that technology basically took Alex’s hearing, but I’m depending on it to bring it back to him.

Before we can get more genetic testing done, the genetics office we went to first has to get approval from our health insurance to make sure they’ll cover it. That’s supposed to take a week or two. After that, if approved, we’ll get Alex’s blood taken again and wait with racing hearts to get those results back (Usher will be tested). I have a gut feeling that those will also come back negative and we’ll never really know what caused Alex’s hearing loss, but since Alex was initially diagnosed, I no longer trust my gut which said that there was nothing wrong with him.

Thinking about all of this and feeling my anxiety level going up reminds me of when we were in one of our audiologists’ offices a few months ago and a conversation was had about how most parents don’t get genetic testing. I can sort of relate to why they wouldn’t. When Shannon first told me that they wanted to do a second round of testing, I was very tempted to say that we should just stop torturing ourselves and deal with whatever may come as it arrives. She shook me out of it immediately by saying the obvious – we want to make sure that we get as far in front of whatever could potentially be coming as possible. Dead-on correct, of course, and I felt guilty afterward for even considering we should stop just so that I would maybe have a little less anxiety. I would have come around on my own, but I guess I’m writing all of this out to say that I couldn’t really relate to the parents who opted to not get genetic testing done previously, but I understand a little bit more now.

This whole process is terrifying, but I think it all falls in line with how I think and hope the next five years are going to go; the first year is going to be the hardest, and though the next few won’t be a cakewalk either, they’ll be better. I feel like we’ve already dealt with so much, from the diagnosis to the emotions afterward to the research to the doctors to the early interventionists… and we haven’t even hit the MRI yet, which will give us a good indication of whether or not Alex is a candidate for CIs and how GOOD of a candidate he might be. Never mind the surgery that’s looming!

Regardless – it’s a one step at a time thing, and I’m lucky as hell to be in this with a woman of my wife’s caliber. Every day is its own victory, and our little boy continues to give us signs that he’s going to be fine, from the smiles and laughs he gives us (especially Shannon!) to his progress with his physical development. The kid’s already a warrior, like his mom.

As always, more to come.