Parker strikes again . . .

Nothing. Surprises. Me. Anymore.

Looking back I wish I’d started this blog just after Parker was born. I didn’t. I had a healthy e-mail list but unfortunately, I didn’t save any of the e-mail updates I sent out. When it came time to do Parker’s reconstructive surgery I knew I wanted to start a blog. I wanted it for myself as a record. I wanted it for friends and family to keep up hour by hour or day by day. And I wanted it for all the families who would go through this after us. I know, nearly two years later, that there are families who read the blog looking for some notion of what it is like for those few weeks before, during and after the reconstruction.

When I named the blog “The Road Less Travelled” I had two things in mind. First, just this whole trach, medically fragile thing. Second, kind of like a secret joke to myself, I figured that somehow, on this path, Parker always manages to do things differently.

I’m telling you this now because this trip to Cincinnati was no exception. Here’s a recap.

Sunday afternoon we arrived and to blow off some energy we went to the Newport Aquarium. Lots of fun. Parker even tried to pet a shark but his little arms were too short.

We checked into the hospital for his sleep study and Parker was an absolute peach. He did everything the nurses asked him to do and he did it with a smile. Things were looking good!

Overnight he did pretty well but I was annoyed because I thought he had a good night, meaning I didn’t think he snored and struggled as much as I see most nights at home. When I lamented to the respiratory therapist she assured me that Parker “showed his true colors.” In fact, she said she was going to find the doctor ASAP and get some information to the pulmonary team before we went into the OR because he’d had at least one 30 second event during the night. An event, in sleep study terms, means that for thirty seconds he didn’t breathe. I learned later that during that time he desat immediately into the 60s and stayed their for the whole event. Not good.

We actually went into the OR nearly two hours late on account of everyone trying to get all the information into the right hands. They came out during the surgery and informed me that Parker needed an emergency tonsillectomy and adenoidectomy.

Now, I’m a planner. I like to understand what is going to happen. I like to have lots of back up plans for all the things that can potentially happen. Since I knew it was likely that the tonsils would need to come out this year I’d asked a lot of questions over the last few months. I was assured that they would never take out the tonsils in an unplanned surgery as it messed up the OR schedule too much and since I was out of town I would need to stay in town for a week or two after to make sure Parker didn’t have a bleeder.

So when we packed for the trip I didn’t pack extra undies. So you can imagine that as soon as I got over the shock that things were so bad during the sleep study that they needed to back up the OR schedule to take Parker’s tonsils out ASAP then I started trying to remember where the mall was because I knew they were going to make us stay around for a little while.

Parker likes to break the rules.

And there is more.

The pulmonologist talked to me after his portion of the scope and showed me some interesting pictures of Parker’s airway. I immediately recognized the trademark “cobblestoning” in his esophagus. He’s never had it and it wasn’t present at his last scope in July but I have seen enough scope images from other trach kids to know what I’m looking at and it usually means reflux. To make matters worse, there is evidence in the tissue in Parker’s lungs to indicate that he is not only refluxing but that he is silently aspirating the reflux causing some damage to his lungs. Hopefully over the next few months we can get this under control and reverse any damage and certainly avoid causing any more. At any rate, it seems we will have at least one more visit with our pulmonolgist friends.

There is some good news: the graft site from Parker’s reconstruction surgery looks wonderful, healthy, perfect and even better it has grown since his last scope. You may recall that sometimes reconstructed airways don’t grow adequately to support the airway and an additional reconstruction is required. We aren’t out of the woods on that yet, but it is really comforting to know that his airway is growing at this point.

So, we were admitted overnight for observation. Having a reconstructed airway complicates just about everything and the edema post tonsillectomy can be taxing. They have also asked us to stay in town until next Monday. We are amusing ourselves with shopping and complimentary tickets to area attractions for kids.

ENT is hopeful that the removal of the tonsils and adenoids will resolve many, if not all, of the nighttime issues. But only time will tell and, of course, we don’t have the full sleep study results yet.

You may recall that Parker has had his adenoids removed one time before. I distinctly remember Dr. James saying when he did the surgery that “Adenoids can grow back. It’s rare, but it does happen.” I laughed and said if anyone’s would it would probably be Parker’s. Here we are, two years later with fully regrown adenoids that were completely blocking the nasal passages.

Yet another reason why . . . Nothing. Surprises. Me. Anymore.

Tomorrow I will try to get a card reader and upload some images from our stay!

1 Response to “Parker strikes again . . .”

  1. 1 thai March 5, 2010 at 3:39 am

    Thanks so much for this update. I kept thinking – didn’t he have his adnoids out already?? Wow – an adnoid over-achiever! You go, Parker!

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