This is the continuation of the medical drama we’ve had with Grady this week. If you haven’t read part 1, you really might want to start there to know what we’ve been dealing with. The short story is that Grady was rushed to the ER on Thursday night with rectal prolapse and I bled all over the beige cloth seat in my brand new car. If you’re now confused, take my advice and go read part 1.
I woke up first thing on Friday morning and called the GI specialist that we had been referred to in Pensacola. He is at Nemours Children’s Hospital and because I’ve dealt with them in the past for Styles’ possible Sturge-Weber Syndrome, I knew that it could be weeks or months before we were seen. I hoped that it would be sooner rather than later, seeing as rectal prolapse in a child that has zero history of constipation is more than a little alarming. It is also something I’m not looking forward to encountering again.
The gal who answered the phone was so nice and seemed as alarmed as I felt. The doctor was in surgery but she said the nurses were going to page him and see if he could fit me in soon. I let her know that I live a little less than two hours away and that I would be there as soon as I could if they could get me in that day.
Thirty minutes later we had a 3:20pm appointment. I rushed to get Grady, Madilyn, and myself packed with overnight bags and all of the trimmings and trappings of maybe-overnight travel. The ER doc had indicated that sometimes surgery is needed to repair rectal prolapse, so I wanted to be prepared should the need arise.
While I was packing, Grady said he had to poop so I put him on the toilet and when he began to bare down I told him not to push and to just let the poop come out on its own. Well, apparently that was the wrong thing to say because he suddenly did not have to poop any longer and off the potty he got. About an hour later he had the urge to poop again but as soon as he got on the toilet he started pushing, which is something we really want to avoid at this time, so I became a little frantic and told him not to push. Naturally that was, once again, the wrong thing to say because whatever was going to come out suddenly became quite shy and that is the last time he had to poop since.
We headed out for our appointment around 12:30. I knew we would be a little early but I wanted to give us plenty of time to get there, get checked in, all of that fun stuff. My biggest wish, was that Madilyn and Grady would take naps on the way over to Pensacola so they didn’t act like Gremlins during the doctor’s appointment. Unfortunately, or fortunately, depending on how you look at it, the new Mitsubishi Outlander rides so smoothly and so quietly that nobody was even pretending to contemplate a nap. As a matter of fact, I’m relatively certain I got laughed at when I suggested it.
One stop at Starbucks, two car-crazy, overtired preschoolers later, and there we were at the spacious and made-for-children Nemours Children’s Clinic.
Fast forward to the part where the doctor comes into the room.
The usual niceties happened and we started talking about Grady’s history.
This is where you get to play Dr. House.
Grady has no history of constipation. I can’t remember a time Grady has ever had poop that was anything but not-quite-solid or diarrhea. It’s always one or the other. He has no known drug allergies that we know of, but does suffer from hay fever. Grady has a history of having diarrhea and vomiting when he eats “too much” gluten. “Too much” ranges from one piece of fried chicken to three slices of pizza, a handful of pretzels, and a slice of cake. Grady has a rash on the back of his arms that sometimes comes close to disappearing, only to return full force when he eats certain carby foods. He used to have a hearty appetite, but hasn’t been eating dinner for the past couple of months. He prefers proteins and politely declines pastas, breads, etc . . . often. Grady sleeps really well and very hard. His naps are generally 3 hours long and he sleeps through the night with no problems.
The doctor explained that children who have rectal prolapse and no history of constipation are generally suffering from one of a few things. Those things are:
1. Celiac Disease
2. One of a multitude of thyroid disorders
3. Cystic Fibrosis.
That list produces some pretty scary things. I should be well prepared for Celiac, but I don’t feel like I know anything about it, maybe just enough to know that it’s scarier than just being Paleo or gluten free. Cystic Fibrosis scares the bejesus out of me. I don’t even know what to make of the thyroid disorders.
There is a clear “best” and “worst” here, but even the best isn’t favorable. My gut tells me that he has Celiac Disease. I’ve always suspected that Kyle has it, though he’ll likely never be tested and will deny it to his grave. I’ve never really suspected that Grady had it, though I do know beyond a shadow of a doubt that he’s allergic to gluten due to the beer-smelling vomit and diarrhea he has after he eats too much of it. I know people think I’m being an idiot or a crazy person when I say he can’t eat gluten, but there IS a reason. I should be glad that of the pool of things it could be that I believe it’s Celiac, but I’m just even more confused and emotionally and mentally worn thin.
Why am I so scared? Why did I nearly break down into a flood of tears last night? For a few reasons. One is that I’m exhausted. Two is that I’m hormonal right now, ifyouknowwhatimean. But the big ones are that:
A. My son is sick.
B. He could suffer rectal prolapse again and all I can do is let it happen and then try to coax it back where it belongs. Before that can happen, I have to get him to be unafraid to poop again.
C. The test for Celiac requires that you be eating the equivalent of four pieces of toast every day for no less than a month for it to register a true positive. We do not eat gluten at home except on the rare night I am crunched for time and we have pizza. I’m so afraid that Grady is going to have a false negative for this test. Do I start feeding him gluten everyday in preparation for a retest or do I start treating him like he has Celiac and working on healing his gut? We won’t know his results until next Friday, perhaps not even until the following Monday.
D. I’m alone. I have a great online support system and a husband who loves his family but works a very time-consuming job. I came home from our appointment in Pensacola yesterday to an empty house and I had nobody to put the kids to bed so I could cry outside of their presence. I had nobody to give me a hug after a long and trying day. I didn’t even have a friend I could call and ask to come over just so I wouldn’t be so entirely lonely after a hard day. This isn’t about me, it’s about Grady and his illness, but it’s hard to do it with very little support.
E. I’m beyond terrified that he’s going to suffer rectal prolapse again and I don’t know if I can handle it. Maybe now that I know what it is and how to get it to go back in I’ll be OK, but I’m still terrified about it. I want him to poop, but I want to know that it is going to be OK.
I’m at the point where I really don’t know what to do. I want to just treat him like he has Celiac and work hard on repairing his gut, but I want to be able to provide a SOON positive Celiac test if this one comes back negative – assuming, of course, that the thyroid and CF diagnoses come back negative as well.
Grady is completely himself other than not pooping four times a day. He is happy and active and sweet. Regardless of what the diagnosis is, it is going to be such an uphill battle, and one that I’m willing and ready to fight, guns blazing. I’m just not always sure that I’m strong enough to fight and that worries me.
I’m also afraid of the naysayers. There are people in our lives who have said, “well maybe it’s nothing and it won’t happen again.” When clearly it’s something and something that we’ve been dealing with for nearly 3 years without really knowing the depth of the problem. Saying “maybe it’s nothing” minimizes the fact that we need to find out what is going on with Grady in order to heal him. Because I’m not a bandaid person, whatever his diagnosis is, is going to require an entire upheaval of our lives and the way that we do things. Am I capable of turning this ship full of headstrong people around? I don’t know.
I hate not having answers and I’m frustrated that this will be the longest week of waiting in my life.
I appreciate each and every person who had read this, who has reached out to me via text or private message, and who has left me notes of love and support on my status updates. Every person who has reached out is important to me and I thank God for your presence in my life.
If you have any insights on rectal prolapse, Celiac Disease, thyroid disorders, or Cystic Fibrosis, please shoot me an email (firstname.lastname@example.org) or a private message on Facebook. I would love to hear from you.