I had a stomachache one day and I was complaining about it. I asked Seamus "How do you do this all the time? Does your stomach hurt everyday?"
"Yes"
"I'm sorry, baby"
"It's okay, Mommy"
But you know what, it's not okay.
It's not okay that just the thought of pooping can make him cry.
It's not okay that we're no longer surprised when he jumps up in the middle of dinner to go throw up and then comes back and finishes his meal like nothing happened.
It's not okay that some days he is so gassy and distended that he can't tolerate shaking in his vest because it hurts too much.
It's not okay that every day a four year old boy has to be tied to his feeding pump for 2 hours getting Miralax pumped through him in order to poop, along with Mucomist to make it less sticky, Erythmycin to improve motility, Prevacid for reflux, probiotics for bacterial overgrowth, swallowed Flovent for eosinophilic esphogitis, and Pentasa for colitis.
It's not okay that he gets humiliated when he has accidents, which are no fault of his own, because of all the medicine he gets pumped through his system.
It's definitely not okay that even with all the daily meds, he still gets blocked up and now needs a weekly heavy-duty four hour clean-out with Go-lytely which means every Sunday we can't leave the house because you never know when it will go into effect.
There is just nothing that's okay about what he has to go through.
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He had CF clinic on Friday. Our regular doc, Dr P, is on maternity leave so Dr Preston Campbell, the medical director of the Cystic Fibrosis Foundation was filling in. He was really good with Seamus and talked with us for a long time about Seamus' GI issues. He told us he has never seen any other CF patient with such extreme GI issues. That was a shock because he has seen thousands of patients. At first, I thought, "Okay, we're not crazy. This is really serious" but then I thought "Oh shit, we're not crazy. This is really serious."
He didn't really like it that so far, the treatment has basically been just to keep increasing Seamus' meds and when that doesn't work, admit him for a longer clean-out than we can do at home. He didn't really have anything new to offer that could help Seamus currently but he does feel that there is hope. Some of the new drugs being developed work specifically on Seamus' type of gene mutation. There is also a new enzyme which should be approved soon that is the first one not made from pigs. Since Seamus' most severe food allergy is to pork, that's good news for him.
