Month: March 2014

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.

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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.