A week ago, I got food poisoning. I suspect my take-out egg roll. Whatever the cause, at 3 a.m. I woke up feeling like a New Year Dragon was dancing inside my abdomen. I barely slept, but tried to drag myself out of bed in the morning for a meeting with Patrick’s therapists. I was almost there, when a piece of toast did me in. Eating made the dragon renew it’s dance with added vigor. I cancelled the meeting, sent Patrick with grandma, then I spent the rest of the morning laying on the couch. By evening, I was mostly better, though bedtime and mealtime still caused belly aches for the next several days.
Coloring pictures and sipping on water with Daddy at a HopeKids family game night.
It’s been a long time since I had a stomach bug. One of the greatest blessings I’ve been given as Patrick’s mom is better than average health. I’d forgotten just how awful that feeling can be.
Having a stomach ache made me admire my little boy all the more.
This week, Patrick’s been struggling with bacterial overgrowth again. Because he’s missing the valve that separate the small and large intestine, and because his motility is so bad, Patrick often has problems with the bacteria from his colon growing rampantly in his gut and stomach. In essence, it’s like chronic food poisoning.
I think it’s time to tweak the oral antibiotics that treat this again. The current regimen lets this come back, almost like clockwork, every other week.
This morning, he started to not feel well and came to get me. But he wasn’t quick enough. Before I could get the equipment to drain his stomach through his gastric button, he was sick. Today it was especially bad and I had no choice but to leave him crying and throwing up with a towel on his lap while I made a mad dash for his “belly bag” to help bring it under control. Between what he threw up and what I drained, I estimate that there was at least half a liter of old bile sitting in his stomach.
And yet, this morning, as always after one of these episodes, as soon as the discomfort was gone and he was cleaned up and his clothes were changed and he’d had a drink of water and a hug and a kiss, he was back up and smiling and playing again. He is so strong and so patient!
Very often, his discomfort only shows itself when it comes time for him to try to sleep and he doesn’t feel well or he worries that he won’t feel well. Then, he tries to stay awake so he can keep acting happy. He did his best to change the subject and keep playing when I tried to rock him to sleep. He hates waking up sick. He’s napping right now with his belly to downdrain and extra IV fluids running extra fast so he won’t have belly aches and won’t be thirsty and won’t have to worry. I had to get all this in place them wrap him extra tight in an extra warm blanket until he finally quit fighting and fell asleep. He’ll need his rest.
People often comment to me that he looks so happy, so healthy, so good. Then they ask me if he’s doing as well as he seems. My answer is usually, “He is doing much better than anyone ever thought possible.”
This is true. Patrick is defying the odds in terms of health.
But the part I don’t often answer is that he is still a sick little boy and odds are his gut will only get sicker. He has heartburn and belly aches and often throws up.
Still, he has made the choice to be healthy as much as he can be. He has made the choice to be happy as much as he can be. He has made the choice to be undeterred by his pain and illness any more than he must be.
And he is teaching me a lot about bravery and patience in the face of belly aches.