In the pre-transplant world, it’s good for Patrick to be building immunity. So, Brian and I have not been overprotective. Even common childhood illnesses can mean extra work with Patrick, though.
Yesterday morning, Patrick wasn’t as interested in breakfast as usual. (Not that he ever eats a lot, but breakfast is the meal he eats best.) Then he opened his mouth wide and I spotted the culprit. His tonsils were bright red and covered with little bumps.
Great. So the first question is “Is this a normal childhood thing? Or is this a complication of Short Gut?” A childhood illness we might be able to keep at home under mom’s care. However, a complication such as acid erosion or varices could mean something much more serious. Where to start?
First, call dad so he’s not caught off guard by a frantic call later. Second, call the pediatrician.
Patrick’s got one of the best pediatricians I know. However, if she’s not around, then finding the right backup doctor can be tricky. Patrick’s not a simple kid so even simple illnesses take some creative treatment. So yesterday, since Patrick’s doctor and her residents were all booked up, the scheduler did some digging and found me a pediatrician in another office.
At noon it was pouring rain. At 12:30 Patrick finally conceded that he needed a nap and fell asleep. At 12:45 I juggled a sleeping Patrick, diaper bag, medical history, and me out the door and into the car. There ought to be awards for moving a sleeping child without waking him – especially in pouring rain. We just made our appointment at 1.
Miraculously, the scheduler had found me a pediatrician with other Short Gut patients. (This is an especial miracle, since she relayed the message to the doctor that Patrick was medically complex because he had “Short Duct Syndrome”.) She put me at ease that what I’d seen was most likely the result of a virus that’s going around our area right now. Then we spent 10 minutes trying to get Patrick to open his mouth wide enough for her to see.
Sure enough, Patrick has Herpangina, a virus caused sore throat with blisters and sores on the throat. There’s no treatment for it, other than to try to relieve symptoms with soft foods. It’ll last about a week.
Of course, childhood illnesses aren’t simple when you’re sick enough to need a transplant.. no matter how healthy you look on the outside.
The bug has upset Patrick’s tummy that doesn’t have enough gut to absorb extra fluid with.. and too much stasis to even pass it through. So about 2, Patrick spit up for the first time. I drained 2 cups of fluid in 10 minutes from his stomach. He seemed to be feeling better eating french fries at a fast food restaurant last night… Until, of course, he ate one two many and it all came back, plus another several cups.
I never dreamed I’d be in a situation where my kid throwing up all over in a restaurant would be, first, not a surprise and second, not a disaster. It was a mess! But I knew it just meant it was time to go home and rest his tummy. Drain first, french fries second.
I’ve been running extra fluids all day to keep up with what he’s losing as I vent his tummy to prevent future episodes. And, I’ve been watching the thermometer.
See, if this illness follow it’s normal course, then Patrick will probably get a fever, too. If it gets high enough, we’ll probably start asking those questions I hate. “Do we call?” “Does he need cultures?” “Do we go to the hospital?” I hate to make him go sit cooped up in a hospital room for a little sore throat virus. But sometimes it’s better to be safe than sorry.
In the meantime, though, Patrick is being completely endearing and adorable today. He climbs up in my lap and moans his best pitiful moan. Then he grins and snuggles down. It took a conscious effort to not just sit and hold him while he slept today. How can you be frustrated by someone who’s so cute and patient when they’re sick?
Patrick Hoopes 