One last surgery #
Our son’s third and final surgery took place when he was about twenty-two months old. By then, the surgical center, the flights, and the routines all felt familiar. We knew what to pack, what recovery would look like, and how to care for him afterward.
This time, however, one thing was very different. He was no longer a baby. He could tell us when something hurt. He could tell us when he was scared. And we understood every word.
Because he would need a catheter for two weeks after surgery, we asked my mother to come with us to Texas. Having an extra pair of hands made a tremendous difference.
A smooth beginning #
The surgery itself went smoothly. Compared with the first two operations, we felt much calmer walking into the surgical center. We already knew the nurses, the surgeons, and many of the routines that had once felt overwhelming.
Recovery, however, brought a different set of challenges.
The little things we didn’t expect #
Not long after surgery, we noticed that our son often had a low-grade fever and flushed cheeks. We had seen something similar after the second surgery, although it had been much milder. At the time, we wondered whether it might be related to HBOT. This time, however, the fever was higher and the redness was much more noticeable.
We contacted our care team, who explained that these symptoms could be side effects of oxybutynin he took, the medication used to reduce bladder spasms. Since our son was older, he was taking a larger dose than before. Following their advice, we slightly reduced the dosage, and the symptoms gradually improved.
Once again, we were reminded that when something worried us, it was always better to ask.
Medicine became the hardest part #
Giving medicine had never been easy, but this time it became one of the biggest challenges. We tried mixing it into his favorite foods. We mixed it into yogurt. We mixed it into fruit. Nothing worked. Eventually, he stopped trusting even the foods he normally loved.
In the end, we found a routine that, although far from perfect, helped us get through those two weeks. We played his favorite cartoons to distract him. Before we started, my husband prepared every medication in advance. My mother gently held his hands so he couldn’t grab the syringes. I held him in my arms. Then my husband quickly gave each medication into the inside of his cheek before helping him swallow. Everything happened within seconds. Even so, every dose felt like a battle. As soon as he saw us preparing the medicine, he often started crying.
Afterward, we always held him for a long time. We knew these medicines would help him recover more comfortably. We just wished there had been an easier way.
Recovery wasn’t always predictable #
Another challenge was his digestion. Some days he became constipated. Other days he had diarrhea. We weren’t sure exactly why. It may have been the stress of surgery, the medications, the anesthesia, the travel, or simply being away from home. Whatever the reason, we learned to adjust day by day.
When he was constipated, we offered foods he enjoyed that were high in fiber, including broccoli, dragon fruit, and kiwi. We also added chia seeds to his meals, mixed Miralax into his milk when needed, and occasionally used a glycerin suppository if nothing else worked.
When he had diarrhea, we kept his meals simple and focused on foods like rice and bread while waiting for things to settle.
Because the bandage would stay on for two weeks, we also became very careful about diaper changes. Whenever he had a bowel movement, we cleaned him as soon as possible to keep the bandage as clean as we could. Even with all that effort, by the end of the two weeks the bandage had developed a strong odor.
Originally, we had expected it to come off sooner. However, after surgery the nurses explained that our surgeon had placed an additional layer of external stitches called Steri-Strips. Because of that, we were asked to wait longer before soaking the bandage. Sometimes recovery simply takes the time it needs.
Hearing his voice #
This surgery was emotionally different for another reason. Our son could now tell us how he felt. At night, he sometimes woke up uncomfortable and called for Mommy. Hearing those words was much harder than hearing a baby cry. Sometimes, after he finally fell asleep again, I quietly cried too.
Becoming the caregiver he needed #
Toward the end of recovery, my mother watched me change another diaper. By then, moving the catheter, applying Aquaphor, and gently caring for the surgical site had become second nature.
Later, while we were helping our son take a bath, he twisted and cried as I carefully peeled away the last tiny piece of Tegaderm that was still attached on his tummy. My mother looked at me and quietly said, “That looks so scary. I don’t think I could do it.” I bitterly smiled and answered, “I’m his mother. If I don’t learn how to do this, who will?”
Looking back now, I realize how much this journey changed me. Before our son’s surgeries, I knew almost nothing about postoperative care. By the end of the third surgery, I sometimes joked that I had learned enough to become a nurse.
I hadn’t planned to learn any of those things. I simply learned them because my son needed me to.
Take a deep breath. One day at a time.
