When I Knew This Was Forever

In my past few posts, I have detailed the discoveries of my son’s two major birth defects, a multicystic kidney and tracheal esophageal fistula, and their impact on us. Today, I’d like to write about two specific moments that let us know that we would be dealing with the fall-out from these anomalies forever.

Around the age of 1, we slowly began the scary process of trying to transition Owen to table food. This is a trying time for parents of any child, but for a child who essentially has a “dead” spot in his esophagus because the peristalsis is so poor that food can get stuck, and no language to communicate that, it is more than stressful. Over the course of several months, we had to learn how small to cut his food, and which textures were easier than others for Owen to eat. For example, apples and carrots (unless really, really cooked), no matter cut how small and despite his ability to chew, were impossible and always got stuck. Anything starchy and crunchy, like a cracker or cereal, was easy and never got stuck.

Once we had mastered what he could and couldn’t eat and found substitutions for things he couldn’t eat, so he could still have a well-rounded diet, we were stunned to find food starting to get stuck again. After a few meals of this (thankfully, with Owen spontaneously throwing-up shortly after the food was stuck), we went in to the doctor and a few x-rays and a barium swallow study later, we were told that he would need to be dilated again. Essentially, he was growing too fast for his already narrow esophagus to keep up. So he was dilated for the second time. (The first time was a couple of weeks post-TEF repair because the scar tissue had built-up from the surgery and his esophagus had closed.) Thus, he was dilated on 8/31 of that year. And, again on 10/5 of that year. And, again on 12/13 of that year.

Coming out of that third surgery in almost as many months, our heads were spinning. Was it going to be like this for the rest of his life?! A dilation every 4-6 weeks? Was this normal?! Was this our new normal?! No one could tell us. Owen “would be dilated as needed” was what I was told. Needless to say, even though every meal was already highly supervised, I watched Owen eat the way others would watch TV. I would just sit in front of him watching every bite –making sure that another bite would follow (a sign to me that something was not stuck) and after his final bite, making him drink some water, again making sure that nothing was stuck.

And, stuff still did get stuck occasionally –if he ate too fast, or didn’t chew enough or put too much in his mouth at one time. I became an expert at reading his visual cues –I was an anthropologist of Owen. I learned that if something was stuck, he would almost always stop eating, look slightly uncomfortable, might wriggle around in his chair, as if trying to get the food to go down, and his eyes would water –a sign that he was about to throw-up. This is what he usually did within a minute or two of something being stuck.

And, stuff still occasionally gets stuck. (At least now he is old enough to tell us.) We once had a blueberry get stuck –he accidentally swallowed it whole and I am still kicking myself for not cutting it up. And, because the blueberry wouldn’t come up or go down after hours of trying, it required a trip to the emergency room, an overnight stay and a full-on surgery to remove it –of course, with nothing else to eat in the mean time and an IV so he could stay hydrated. A really pleasant experience for all involved. (During this stay, I will never forget trying to help Owen, in a tiny hospital gown with an IV and rolling IV pole, trying to get into and out of a Cozy Coupe in the inpatient play area. He was a pissed-off, hungry child unable to play the way he wanted to play and I was a mother feeling stupid and responsible. We were both miserable.) Despite still feeling guilty over that blueberry, I have resigned myself to the fact that he will most likely need to be dilated again, probably during future growth spurts –but who knows. I have learned that, often, there is no rhyme or reason to any of this.

That’s the esophagus. Let’s now talk about the lungs.

The TEF repair also left a weak spot in his trachea. Once he started preschool, and was exposed to every virus out there, in a 13 month span he ended up with pneumonia three times (due to being unable to clear his lungs successfully of secretions), with one pneumonia that landed him in the PICU for a week. After that, we decided that something had to be done to prevent further pneumonias, naturally. Thus, our pulmonologist suggested the Vest therapy.

I was excited. No more pneumonias! The nurse came to our house to fit the device to Owen and to show us how to use it.

After she told us to have him do it every day, as a preventative measure, to help keep his lungs clear, and several times a day when he was sick, I asked, “For how long?”

She replied, “For at least 15-20 minutes per day.”

“No, I mean for the next few months? For the next year?”

“No…indefinitely –until his physician says he doesn’t need it anymore.”

“Indefinitely…Do you mean forever?!” It hit me like a ton of bricks. I welled-up with tears. Once I thought about it, I knew this condition wasn’t going away, so of course he had to do it indefinitely.

It never occurred to me that he could have to do this for the rest of his life. My child is literally and figuratively now tethered to this machine, quite possibly, for the rest of his life. This was a profoundly sad moment for me. Not for me, but I was so sad for Owen. Sad that this machine would become a part of his daily life the way getting dressed every morning would. Sad that he had to depend on this machine to keep him healthy. Sad that he might have to bring this thing to college with him.

The one bit of good news is that as the rest of him gets bigger, this weak spot will stay the same size. So, hopefully it will cause less of a problem as he gets older. But again, who knows.

I have learned to live very uncomfortably with “who knows.”

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