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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!

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Seven months later . . .

It’s been seven months since I updated this blog. That officially makes me slackerific! Here’s the lowdown since July:

We trialed a drug that we had reason to believe might reduce or eliminate Parker’s cyanotic spells. Instead it put him to sleep. After three weeks of a kid who could barely keep his eyes open to function we called it a day.

After Parker woke up from his drug trial something miraculous happened. He found his voice. Something clicked and he really started adding words to his spoken vocabulary. By the time he started speech therapy again in September it was remarkable to read back on his educational plan that had been written in May for an essentially non verbal child. Since then, he’s basically not shut up. His vocabulary is on par with other children his age (including important phrases like “We will, we will rock you” and “I have a great idea, Mommy!” He does have a lot of work to do with his actual speech. He often lacks clarity and that is frustrating for everyone but we are managing just fine.

Along with this vocabulary came an opporunity for Parker to articulate what he was feeling just before an episode. He was then and is now adament that he “can’t breathe.” With this, we began coaching Parker that he needed to slow down and try to breathe when he felt frustrated or out of control. In short, the number of cyanotic episodes has significantly decreased since summer. In fact, now they are almost exclusively associated with an injury. The bummer side effect to all of this is that Parker is now potty trained and since he pees every time he has an episode it causes a bit of a mess. And when you are wearing eighteen layers of clothes to sled in the back yard it sure is interesting!

While I am delighted that the episodes are now few and far between, I find myself re-sensitized to them and I have a mini panic attack during each one. I am helpless and fearful. Constantly wondering “Is this the one?”

Parker does still have noisy night breathing. In fact, the impetus for this update is our trip back to Cincinnati the end of this week. On Sunday he will go to the sleep lab for a sleep study and early on Monday morning we hit the OR (funny, kinda like “hitting the gym” in my world!) for a bronchoscopy with Drs. Cotton and Wood (ENT and Pulmonolgy).

It is possible that the time has come for a tonsillectomy. They are tricky on the reconstructed airway. But I will go into more detail if that is on our schedule for 2010.

The weather is really iffy this week but hopefully we will have an easy drive and time to go the aquarium and meet up with some friends on Sunday before the sleep study.

I will keep you posted. And I won’t wait seven months this time!

Love, Suzanne

New stuff . . .

I’ve been slow in updating. Part of that is because we’ve been so busy! Part is because, honestly, we’ve been digesting.

As you know, Parker had a sleep study done a few months ago. Per the sleep study, his ENT wanted us to discuss the possibility of placing on CPAP breathing support at night.

Another issue re-surfaced after the sleep study. Most of you will need a little back story on this one: when Parker was about 4 or 5 months old he started having these spells. From the beginning they were obviously triggered by a couple of things: he was mad, hurt, or scared. If we were out of his sight for too long, or his brothers took a toy away, or he fell and hurt himself, these were all sure triggers. The spells are scary. Essentially, he passes out and as soon as his body loses consciousness he finally starts breathing again.

We talked to every doctor we know and described the episodes in detail. Everyone independently assured us that our feisty redhead was holding his breath and that he would outgrow it and our job was to try to avoid the episodes and also avoid collatoral injury if one were to happen.

I never bought it. Those who see me often know that I never, ever felt that was what was happening but despite many late nights on the internet researching I also never came up with a plausible (in my mind) alternative.

Finally, after two years, Parker had two episodes in the recovery room after his hernia repair. He was wearing an O2 monitor and each time his levels dipped into the 40s. The nurse calmly assured me that that was NOT breathholding. I went home and hit the internet again. This time I found an article that resonated. I was certain that what this article described was exactly what was happening to Parker. I passed the article to his ENT team at Cincinnati and they agreed to refer him to Dr. Robert Wood.

In Cincinnati CPAP is managed by the pulmonolgy department. That turned out to be our lucky break. We were going to need to see pulm anyway for CPAP so we got referred to Dr. Wood who is the head of the department. He runs a world class and award winning department just as Dr. Cotton does for the ENT department.

A week ago we saw Dr. Wood. I braced for an appointment where we talked a lot about Parker’s airway history and a lot about CPAP and if I was lucky I might get 3 minutes to say my thoughts on these spells. I couldn’t have been more wrong.

To make an already long story a little shorter, the bottom line was that after lengthy discussions, Dr. Wood agreed that what was happening with Parker was not likely typical breathholding and very likely what was described in the article. He believes that Parker is having an abnormally strong emotional reaction to some stimuli and they are causing an anxiety attack of sorts that renders him unable to breathe temporarily. Further, he is concerned that these attacks have the potential to be very, very dangerous. There is the obvious concern that he will hurt himself falling (he’d fallen down the stairs just a few days before our appointment). Second, Dr. Wood feels there is a possibility that one of the episodes could cause a cardiac arrythmia that could be hard to recover from.

End result was that Parker is currently trialing a medication called clonidine. The drug is used for a myriad of things – lowering blood pressure, meth detox, ADHD, brain injury, among other things. It also acts as a mild sedative or anti-anxiety drug. The article (actually a research article) showed some significant promise in limiting or eliminating the episodes with the drug.

Parker has been on clonidine for a week. He slept for most of the first 5 days but yesterday and today he is mostly back to his normal self. He has not yet had an episode since we put him on the drug. That is good but I don’t count those first 5 days. So, the jury is still out as far as I am concerned but things look promising.

If you are still with me. Wow. There is more.

That was a Thursday. On Friday we went into the OR together with Drs. Wood and Cotton. In looking at Parker’s airway and reviewing the results of the sleep study it was decided that Parker’s apnea is not severe enough to warrent CPAP. In fact, with the exception of tonsils that will eventually probably have to come out, his airway is looking really, really good.

Then the other shoe dropped. Dr. Wood said that there were several concerning events during the sleep study. Several times during the night Parker desat into the low 80s or low 70s for no apparent reason. They weren’t associated with an apnea or really anything else that they could tell from the sleep study. His average sat during the night was 94. That didn’t phase me, because that was pretty typical during his time that he was trached. Dr. Wood wasn’t impressed. In fact, he didn’t like it.

The conclusion was that there is something else. Whatever it is is not airway related. Next stop: lungs and heart.

We are going back in three weeks for a high res chest CT scan and an echo cardiogram. We will also meet Dr. Wood again in pulm clinic to discuss our clonidine trial.

We have no idea what the future will bring. For now, we remain thankful for the fact that Parker in many ways is a very typical little boy. He knows his letters and shapes and is learning to ride a bike. He learns new words each day, though his favorites remain NO and WHY.

Our journey continues . . .

Quick Update . . . and a request.

Parker’s last day of preschool is today. I’m sure he’s going miss it. Somehow, staying home all day with mommy just isn’t as fun!

In two weeks we are headed back down to Cincinnati Children’s. We are meeting with the head of the Pulmonolgy Department to discuss a few things. It seems likely that Parker will need to go on CPAP at night to support his breathing. At this point it is just too labored and too interupted for him to get a good night’s sleep. He will also go into the OR with both Drs. Wood (pulm) and Cotton (ENT) to look again and make sure that that is the right option at this point.

We are all hopeful that CPAP is a temporary measure (6 months to 2 years) to allow Parker’s airway to continue to grow and perhaps avoid the need for future surgical intervention.  Of course, there is a strong family history of obstructive sleep apnea so I, for one, am not going to hold my breath that we will ever get this kid off of a nighttime breathing machine. I’m still playing in my head how exactly we are going to get a feisty, redheaded bulldog  to wear a mask on  his face at night.  Not to mention  we get to go back to the days of a pulse oximeter machine as well.

Ok. Now, for the really important part of my post . . . my sister in law is a marathon runner. This makes her a  crazy person in my book  but I still like her anyway. Well, she’s signed up for Team in Training. If you aren’t familiar with the program it is a marathon training program designed to do massive  fundraising for blood cancer research. Since very few of us have not been touched by cancer, I thought I’d do my part to help her with her fundraising goal. Every little bit counts. And to sweeten the deal, Cathlin offers the following incentives:

For $50 you can add a song to her play list for the race

For $100 she will sell you a mile (mile 25 costs $120)

For $250 she will make you 250 peanut butter cookies with or w/o Chocolate Kisses (or Chocolate Chips) or 250 Chocolate Chip cookies and overnight them to you

For $500 she will write your name on her racing top

For $750 she will help you with your personal tax returns (she’s a CPA, don’t worry!)

For $1000 she will create a one of a kind bejeweled/bedazzled snuggie for you (I have NO idea what this is but it sure sounds fun, doesn’t it? Anyone want to donate $1000 and let us know?

So, if you can donate, please do.  Her fundraising page is here: Cathlin Chyzy – Team in Training.

Thanks!

Lots to celebrate.

April 10th is a big day. This day marks one year since Parker’s reconstruction surgery. One year trach free. It is hard to put into words what this means for us but I assure you it is big! We will probably celebrate somehow – that  is still to be determined and like many things in our crazy household we will probably fly by the seat of our pants! And that is ok – we are used to it by now.

In other news this week: we learned that Parker’s spinal MRI was normal.  No tethered spinal cord. Great news there. Parker also had his hernia repaired on Monday. Another scar to add to his battle wounds. Ian and I celebrated our 9th anniversary this week. I don’t think either of us could have predicted all that would come our way in our first decade together but I’m happy to say that nine years in we are still in love and we still like each other. At this point we plan to keep it that way for at least another 100 years or so!

Coincidentally, this week has brought back a lot of memories for me about Parker’s very first days. Last week, our friend and neighbor had an emergency c-section. She had been diagnosed with a prolapsed cord and was sent straight to the hospital. Thankfully, the newest addition to our neighborhood arrived safe and sound. But in talking to her mom about that day and the delirium and exhaustion she experienced I was reminded of the day Parker was born. After being awake for nearly two days, and going through labor and childbirth I was really not at all in my right mind. Looking back I’m so thankful that we didn’t have to make any really important decisions that day  . . .  big decisions, lack of sleep and epidurals just don’t mix! By the way, I had the supreme good fortune to take portraits of our new neighbor today. If you want to see some of them, peek here: www.suzanneuptonphotography.wordpress.com.

Happy Easter everyone!

Home from the sleep study.

The sleep study was . . .  interesting.

Parker was, once again, an amazing little trooper. He had 10 electrodes on his head. 4 on his face. 2 on his chest and 2 on his legs. He also had two things in his nose, an O2 monitor on his toe and 3 belts on his tummy and chest. And he actually slept, at least as well as he did at home.

Mommy, on the other hand, did very little sleeping. Once he got to sleep I peeked at the O2 monitor. My heart sank as his sats were ranging from 84-89 with rare spikes up to 91. This is, of course, not good. Obviously there are issues. Hopefully they will be easy to fix, like removing the tonsils to eliminate the snoring and apnea. Maybe it won’t be so simple. Now we just wait to hear back from ENT about the official results. I reminded them that we would be down there on the 6th for his hernia repair and that it sure would be nice to coordinate some things. One less trip is always nice. I know they will see what they can do, but I also know that is only a few days away and there are more urgent situations out there.

Here are some images of Parker at the sleep study:

parker2

“Nothing good can possibly come of hanging out in this room. Why do all those people in scrubs keep coming in and asking my mom the same questions over and over again. Doesn’t their computer tell them that I was born with paralyzed vocal cords and got a trach and that that trach came out last April when I had an LTP right here at Cincinnati Children’s? Sheesh. I’m getting bored of hearing that story over and over again!”

parker3

“What the heck is this thing in my nose? They said they were whiskers like  a cat but I think that was a ploy to let them shove this thing on my face.”

parker1

“No comment. I look and feel like a goofball and I’m sure my mom is going to plaster these all over the internet.”

We got to have dinner with Nathan. He is cute as a button. I was just flat out astounded at how amazing his voice is given the fact that he doesn’t have vocal cords and that he doesn’t wear a speaking valve. Kids never cease to amaze me. Unfortunately, Nathan had a cough and developed a fever overnight, so his surgery was postponed. It was a long drive to have dinner with us . . .

One of the hardest parts of this whole experience for me is the fact that we lose trach babies. Two weeks ago we lost Jonah. He was five years old and pulled his trach out in the night and by the time his parents got to him he was gone. It is hard to begin to fathom that life can change like that in an instant and yet it does.

Another little boy, Alize, has come home under palliative care. He’s battled and battled with shunt failure and now they’ve run out of places to place a shunt. His family is spending his last days by his side making every attempt to manage his pain.

We will let you know how next week’s spinal MRI goes.

Busy few weeks ahead.

Tomorrow (Tuesday) Parker and I will head to Cincinnati for a sleep study. I’m sure it will be loads of fun because I can’t imagine there is a two year old out there who doesn’t want to be slathered with electrodes measuring who knows what while they sleep. I promise to post some pictures.

While we are there we hope to meet up with our trach friend Nathan. Nathan is three and will have having a reconstruction surgery done on Wednesday. Please keep he and his family in your thoughts and prayers over the next few weeks. Everyone hopes that Nathan will go home without his trach but his airway is considerably more complicated than Parkers. He was born without vocal cords and with an essentially closed airway. He was trached at 2 hours old and it was by sheer will power that he survived those first few hours.

Next week Parker will have an MRI on his spine. He has a sacral dimple. We like to refer to it as his little crooked bum crack but . . . cute as it is it can be a symptom of a tethered spinal cord among other things. We have very little reason to believe that Parker has a tethered spinal cord but at this point we are just checking out everything to make sure. He’s been full of suprises before so why stop now?

The following week is his hernia repair. We will be back in Cincinnati for that one. It’s spring break for the big boys so we will stay the weekend at Grandma and Grandpa Bug’s in Indiana and do the day surgery in Cincinnati from there. Some of you may be wondering why we are going to Cincinnati for this surgery. It is, after all, a relatively common surgery. The answer is that at this point we are still very concerned about any procedure that requires an intubation. We’ve heard stories of cavalier anesthesiologists using an ET (endotracheal) tube that is too big for a reconstructed airway. This is problematic, sometimes very problematic. We aren’t ready to take any chances.  I’m not sure we will ever be ready to take any chances, truth be known. He’s our baby. So for now, we will pursue all surgeries in Cincinnati with the complex airway anesthesia team at the ready.

Probably sometime after the hernia repair we will learn the results of the sleep study. We may be in for more surgery, we may be in for some watching and waiting. I’m not sure how quickly we will get the MRI results. I’m cautiously optimistic that there is nothing there to worry about. But, hey, if there is an issue, what’s one more surgery? It’s funny. Surgery is never something to be taken lightly. We are all too aware of the risks that anesthesia brings. But, somehow it does get easier. I won’t soon forget that first time we wheeled our tiny baby to the OR for his first broncoscopy it was a truly nervewracking hour before Dr. James came back out to talk to us.

Happy Spring, by the way!