I reviewed these posts recently and I have really missed sharing a component of Thijs’s journey that might be helpful to other families. I’m going to try to tell these stories, though the details may be a little out of order, simply because sometimes, a mother must walk through hospitals in a careful fog, merely to survive her emotions.
During Thijs’s original procedures back in 2015, they warned us about possible complications that we could encounter. At the time, I paid little attention. Honestly, I couldn’t see past my desire to get my son home, and the future could stay where it was. However, when Thijs was about 3 years old, I noticed his stooling had slowed. He was still wearing diapers (we knew he would be slow to potty-train, so we were not concerned.)
However, when Thijs’s system took a prolonged pause and his stomach began to distend, I scheduled an appointment with Hershey and resumed saline irrigations of his bowel. They x-rayed his belly and saw a build-up of stool in his colon, along with a large amount of gas. The possible complications had become our reality: Thijs’s sphincter was hyperactive, meaning, reluctant to relax. The solution would be another surgical procedure, during which they would inject Botox—yes, like the wrinkle-stuff for your face– into his sphincter, causing it to relax. We were surprised to have another surgery before us, but it was a straightforward, out-patient procedure that went without complication. However, Thijs was not a newborn anymore. This was when we discovered him to be an extremely grumpy post-operative patient. But the hospital was well-equipped with a rotating TV, Goldfish crackers and apple juice.
We didn’t know it at the time, but Thijs would have several more of these procedures ahead of him. The relaxing effects of the Botox injection wears off in about 3 months, but the surgeons taught us that our goal would be that over this time, he would develop the neural ability to understand, control and relax his sphincter on his own. And sometimes, we found that the effects of the procedure would last much longer–once about six months!
Honestly, it became an odd reality. The procedures were surgical, including a toddler who was put under with general anesthesia. But then we would drive home, the meds would wear off, and by evening our groggy boy would be goofing off. I would marvel at his normalcy and wonder if it had all been a dream. It was mentally exhausting to be exhausted by something that by all appearances was nothing at all. I would force myself to go about a normal evening, keeping engagements and attending functions, but in hindsight, that was a mistake. I should have stayed home and tended my soul.
But we had some success during this time–Thijs successfully potty-trained! I danced down the diaper aisle of Target as I always promised myself I would, and posted it gleefully on Instagram. This was a big win–considering that some of the “complications” had become our reality, I was thankful for this victory!
Each time the Botox would wear off, we would walk through the same routine: appointment, surgery, home. But what you don’t see is behind the scenes. When not blissfully at peace, I regularly alternated between gratitude for such straightforward solutions–and strain from being constantly on alert. Honestly, I never thought I would be irrigating a 3, 4, 5 year old child, which I sometimes found myself doing to help hold him over until surgery. When he was a newborn, he could sail through irrigation with little complaint. As an older child, it was near torture. He would scream and sob; comforting him through it became a family-wide endeavor. Other than the satisfaction of emptying his belly and the nauseating yet comforting smell of the gas hissing through the catheter, it was so difficult. One night, we came home from Bible Study, it was late and I knew I needed to irrigate him—which I did, while we both cried.
In one day I could go from confident to concerned. I found the whiplash difficult.
One of our most stressful experiences happened about a year ago. Thijs had a botox procedure and we took him home. If memory serves, it had been his fourth or fifth cycle. The surgeon was beginning to warn us about needing to take an alternate course if the regular surgery pattern continued; they worried about the long-term effects of repeated anesthesia on his brain. But again, I pushed that warning out of my mind; I didn’t have the ability to carry it.
That night, as always, I brought Thijs home. It was the first time I had ventured to do the surgical trip on my own–I left exhausted but proud of myself. Though Thijs did seem normal for a day or two, I began to notice concerning symptoms. His appetite tanked, his upper colon bulged, and he became lethargic. In our experience, all key signs of a surprise bout of enterocolitis, which was bizarre so soon after surgery. We spent Fri night, and then again on Sunday afternoon, in the Hershey ER, only to be admitted for 3 full days.
This was an unwelcome and difficult time for our family. It fell over Aly’s 9th birthday, who was separated from me on her birthday–even as she endured the entire day sick from a nasty stomach virus. Most unbearable, we ultimately decided that Thijs was not dealing with an infection, but was walking through the same virus that Aly had—so three days, for nothing. The expense and time were hard to swallow. We have learned to relax when illness causes his system to slow down; things tend to pick back up when the virus (or whatever) passes.
Thijs had his most recent injection in January of 2020, mostly due to a build-up of gas. He did not have large amounts of backed-up stool, but his entire belly cavity was one big balloon; on X-ray, it is quite startling. However, several weeks after his procedure, the gas returned, which I found puzzling, considering that he was not struggling to stool whatsoever. Following an instinct, I began to experiment with dietary options. My husband and I are nearly convinced that gluten has a role to play in his gas issues, though we will know more with time.
Many times, I have felt that we are at the end of this particular saga. However, I have felt that way before, and so I am cautious to declare an end quite yet. Thijs is now 5.5 years old and he is a joy to our soul. He is bright, curious, kind and perceptive. So while we hope to be at the end of needing to support his stooling, we maintain the privilege it is to be his family. No matter what that includes.