More Weekend Recovery

A few minor updates for the story of Alex’s recovery.

His bleeding has slowed way down. It’s almost stopped. At this point I think it’s only really coming out of one of his ears and occasionally, if he has a runny nose, you’ll see some red in it. The first 48 hours after his surgery were the worst in terms of the bleeding, then it suddenly got a lot better, and now we’re waiting for it to completely stop. Having a few tissues close by is really all that it’s been taking in the meantime.

His incisions look great. I was telling Shannon last night that I think that Alex’s first incision from his botched surgery was noticably wider than his new ones, and my guess was that they did that because they knew he was coming back in. His left side seriously just looks like it had a light scratch on it. His right side side is coming along very nicely as well. Message to past self: As bad as the wounds look right after surgery, it’s crazy how much better they get within days. Don’t sweat it.

You can see his implants if you’re looking for them, and I mean really looking for them. I noticed when I gave him his last bath that they were pretty clear when his hair was wet to highlight where they were, but it’s more like you can see a light impression vs two incredibly obvious quarters coming out of his head. When his hair is dry you can find them if you know where to look. When his hair grows out a little bit more I think they’re going to be next to impossible to notice. Pretty cool. You can definitely feel them under his skin, but it isn’t weird; they don’t stick out that much.

Alex’s personality is back to 100%. Like many of the other posts we saw on the CI parent board, it took Alex about two days to kick all of the drugs out before he was obviously back to being himself. He wasn’t a monster to deal with, just a little lethargic. His sleep patterns didn’t change all that much, aside from surgery day.

So really, recovery truly wasn’t all that bad. When I read about how the CI implantation didn’t qualify as being a major surgery, that sounded odd, but I get it now. It was no walk in the park and our hearts ached for our boy, but Alex bounced back so nicely that when I was looking at him yesterday, it was sort of hard to believe that he had been through that surgery only five days ago. By that same token, it’s also weird to know that his surgery is done. It’s been looming over us for so long and we’ve done so much reading and research and had so many conversations about it that to know that we’re now on the other side of the surgery still feels alien. I still find it hard to believe that he’ll be hearing in a month. I hate that he’s going to have visible equipment on his head for the foreseeable future, but I also know it’s going to temporary. Yet another way that our Facebook CI parent group has been awesome is that we were subscribed to it when the Nucleus 6 processor (that’s what Alex will be starting with) first became available, and it was great to see how many parents chipped in to say that they had upgraded and commented on how much better their kids said they sounded and how much smaller they were. The trend will continue, and that takes a lot of the sting out of it for me NOW, but when we actually put them on him that could change. Then again, he’ll actually be hearing us, so that trumps that. Well; it’s easy to rationalize, but we’ll see what happens on activation day. Cannot wait.

What else… though our doctor didn’t say anything about the topic, we decided to keep Alex out of daycare this week. Even though the incisions look clean as a whistle, we decided it wasn’t worth the risk to potentially expose him to something like a dirty little hand or some type of exotic cold virus while he’s healing. Granted, this decision was pretty to make because my work flexibility is very high right now so it isn’t a big deal to stay at home, and on top of that, I only have to stay home for two days to keep Alex out for another eight. I write that out because I don’t want anyone reading this to freak out and think that they might have to do the same thing when they don’t have that flexibility. Shannon and I just very risk averse and are fortunate enough to be able to do those things without rocking any boats with work.

I can’t think of too much else to touch on. Alex’s recovery really wasn’t bad. Our prior research and Facebook board prepared us pretty well in terms of expectations. Again just feeling very grateful that Alex is on the mend and doing great.

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Post-Surgery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Alex is now Bionic

Done.

I didn’t want to write too much leading up to Alex’s surgery today just because I didn’t want to hype it, and frankly I’m a little bit superstitious, so I didn’t want to do what I did last time and make an event of his surgery.

It worked, despite a serious amount of excitement.

The surgery was straightforward; no complications, no catches. Our surgeon mentioned that Alex’s eardrum might’ve looked SLIGHTLY pink, but that was the extent of it.

I’ll write something up in detail later, but bottom line is that we went in at 6am and were home by about 4:30pm. Alex has been very tired – much more so than when we brought him back from his botched surgery. That probably has something to do with the fact that he was under for a lot longer as well as the fact that more work was done. Shannon hit up the boards to see if near-constant sleep after the surgery was normal and got a lot of “affirmative”s, so that was good enough to  help us relax.  He’s been in his crib since about 7:30 now, not a peep.

Tonight’s probably going to be tough and I’m guessing that tomorrow will be pretty tough as well, but the surgery is done, and Alex now has the raw materials for sound. He’s finally got that and is healing up. 

Details to follow, but wanted to write that all is generally well over here, though today was damned tough and the next few days are probably going to be a bastard as well. But we’re thankful for where we are and what we have, and for all of the positive thoughts and prayers that were sent our way to help make it happen.

Here we go again…

It’s been pretty quiet around here for the past few months, so my posts have slowed down a bit. The last thing of note that really happened was Alex’s genetic results coming back clear, but past that, we’ve basically been in cruise control and trying to keep him moving forward with his physical therapy. He’s making good, steady progress in that regard. Our physical therapist has told us, again, that Alex would not qualify for PT at present if an evaluation was done on him now. He still likes to wag his head around a bit, but she feels relatively confident that he’s just “looking for input.” His balance is fine, and he can always be distracted from said wagging, so we’re still looking good on that front.

I feel like I’m basically mirroring what Shannon wrote on her blog today, but the new thing to stress about is that Taylor has a cough and fever. Alex’s surgery is six days from now. The concern, then, is that Alex will catch whatever Taylor has, become sick, and have his surgery postponed again. Alex doesn’t have a fever. He’s snotty, but I think just about every kid at this age is to some extent so that doesn’t concern me too much. He also isn’t coughing or sneezing an irregular amount. 

It seems that the criteria to go through with the surgery is generally:

  1. The lungs are clear of fluid
  2. No fever present
  3. No major ear infection present

I’m not sure how I feel about him still looking OK at this point. If he was symptomatic NOW, then at least there’d be a good chance that he’d be on the mend by next week. I think I’m happier that he’s not showing anything yet.

We have a meeting at the surgeon’s office on Thursday as a pre-surgery checkup. That could be interesting. My fear is they take a look, see something going on, and flat-out say that they’re going to reschedule the surgery. My hope is that I’ll tell them the situation and they’ll say that he looks fine, but will prescribe some preventative antibiotics as an extra precaution.

Regardless, there’s not a whole hell of a lot we can do at this point past wait, keep the kids apart, bust out the hand sanitizer, etc. I want to say that Taylor has caught fevers a few times and Alex didn’t, but my awful memory probably isn’t to be trusted.

I think… THINK the good news is that we still have almost a week until the big day. Taylor’s cough hasn’t been too crazy today, but she always seems to get postnasal types of coughs where things are OK during the day, but really pick up in the evening. With a little bit of luck we’ll keep them separated, Taylor rebounds fast, and that’s that. Again, probably wishful thinking.

And, of course, both kids were healthy for the past five or six weeks.  We’re now bumping up against a timeline that would allow him to hear his family and friends sing “Happy birthday” to him in a few months, so… come on, universe.  Cut the kid some slack.

 

A Little Relief

I got the call yesterday; the extended genetics panel came back CLEAR. Alex doesn’t have Usher’s or any other scary genetic syndrome. It’s a somewhat bittersweet victory because Shannon and I both feel like it was the antibiotic (gentamicin) that took Alex’s hearing from him, but  for me, the sweet outweighs the bitter. I’ve been terrified that Alex’s deafness was just a symptom of something bigger and worse, and now that’s basically gone.  Thank god.

The positive spin I’m putting on the antibiotic factor is this; if medicine took his hearing, it’s going to have to give it back to him as time goes on. I feel like because it appears that all Alex has to deal with is deafness and because of all of the developments happening on that front, he’s going to have the opportunity to take back what was taken from him.

Alex was supposed to be activated today if his surgery had gone through last month. To say that it’s a bummer that it didn’t happen is an understatement, but I’m very, very grateful for the clear genetics panel, so that helps to offset the frustration just a little.

That’s about all that’s going on, but I’m very, very happy to be writing this sort of update instead of what could have been the alternative.

Ear Infections and Anxiety over Genetic Testing Results

I was telling Shannon earlier this week that it was probably about time that I threw something up here, so here goes.

There hasn’t been way too much going on.  We’ve left Alex’s hearing aids out for the time being because he has a bit of an ear infection. It’s a mild one, and it makes me glad that we have the ear tubes that are helping drain all the fluid out, but of course it also makes me concerned that this little guy is somewhat prone to ear infections in general. The sheer chances that we would have his surgery postponed again seem fantastically small, and that’s of some comfort, but it would certainly be nice if he hadn’t made us raise our eyebrows like this. Luckily, we still have it on the calendar to get him checked out the week before to make sure he looks good, and on top of that, we might have some extra ear drops in case we see something go down after that checkup.

What’s really been on my mind, though, is the results of the extended genetic testing panel we had done for Alex. I called the genetics office this week asking for the results or at least to get a status since they were due to be in a few weeks ago. I was sent to the voicemail of one of the genetic counselors, who in return left me a voicemail saying that the director of the lab they were being processed at had to approve them, and he was off all next week. I called back and asked for some clarification; does he have to approve of them because they found something? I was told no, he has to review every result, regardless, prior to it being sent out the door.

Now, in a bubble, I’m not way too concerned that there’s more coming besides Alex’s deafness. I’ve done a pretty significant amount of research on the genetic angle of it. Basically, there’s only a 50% chance that it’s genetic in the first place, which would be interesting because no one in Shannon’s family or my own are deaf. Of some of the scarier things that can come with deafness, most of them have other telltale signs that Alex isn’t exhibiting, or at least isn’t CLEARLY exhibiting; stuff like balance issues, different colored eyes, skin issues, that sort of thing.

I’ve said it before, but the thing I think I’m most concerned about is Usher’s Syndrome, in which deafness is accompanied by blindness later on. That’s the one that often comes with balance / vestibular issues that our PT doesn’t believe Alex has. Additionally, this particular syndrome has a gene therapy available for the vision part of the disease that’s in testing right now, so even if it WAS Usher’s, there’s good reason to believe that Alex wouldn’t have to deal with the terrifying blindness aspect to it.

So basically, we think we’re OK, but that’s why I’m just defensively worried at this point. Hey, I wasn’t too worried when we took Alex to get his ears tested after failing his newborn hearing test, either. I guess we’ll see next week. With a little bit of luck, we’ll get some confirmation that this is all Alex is going to have to deal with in the future.

God knows the kid deserves a little bit of luck at this point.

Surgery Date 2.0

A few things have happened this week, but I think I was just a little tired of talking about it to write.  Here goes.

It was obviously a pretty rough weekend, emotionally. Alex, however, was a champ. He was practically back to his usual self by the evening of his surgery day. By Saturday, no sweat. We took his bandage off and it really didn’t look too bad, though it was still tough to look. The inside of Alex’s ear bled all weekend, which we were prepared for. Hanging in limbo without having another surgery date was awful. His post-surgery care was pretty easy. He had an oral antibiotic twice every day and eardrops twice a day as well for the infection.

My plan on Monday was to call the ENT’s office during lunch and ask about when the ear bleeding would stop and, by the way, did you guys figure out a surgery date yet?

Shannon and I chat online every day at work, and we both agreed that we wanted to get this done by July.  July had to be the month, and if it couldn’t be accommodated, we might have to email around to New York, Cleveland, etc to see if we had any alternatives to get this kid his ears.

About 15 minutes before I was going to call the ENT, my phone rang. It was the office. I was told that we had a new date. The all to familiar sensation of my heart skipping a beating hit again, and then I heard “July 29th.” I was pretty happy with it, all things considered. It was about seven weeks after Alex’s first surgery. As a bonus, his surgery will start at 8:00 am, so we won’t be waiting too long. Not as if that would really matter; if it didn’t start until 4:00 pm and they wanted us there at 6:00 am we’d do it in a heartbeat just to be done with it. It’s nice that we can at least say that it’s going to happen (hopefully) next month.

We also had our post-surgery appointment with the surgeon. I could write for miles about this, but the quick version is that Alex is healing well. The blood coming out of his ear tube (on the side that he had his partial surgery on) is still fine, and it’s slowing down. Apparently Alex’s little surgery surprise is such a rarity that it’s only happened to our doctor twice in the span of fifteen years. Conservatively figuring one surgery every other week, the chance of this happening to Alex was roughly .5%, or 1 in 200. This kid. We thanked the doctor for getting us back into the schedule so close the minimum of six weeks and tried to show our general appreciation. When asked if we should do a preventative course of antibiotics or anything to help lessen the chances of another surprise, we were told we probably wouldn’t have to worry about it due to the sheer rarity of it happening weighed against the possible detriments. Fair enough. We have another appointment with him a few days prior to the surgery where he’ll hopefully take a good look at Alex’s ears and, if action needs to be taken, have enough time to do it prior to surgery date 2.0.

So we’re idling again, which sucks, but at least we’re on the calendar. We’re still ahead of the curve in terms of getting Alex his implants early enough in his life that he can take full advantage.

Now to twiddle our thumbs for seven weeks.