Grateful Grateful Truly blessed and duly grateful

Here we go again

Two weeks ago, I was mighty happy about where Eddie was on the health front. He was doing "exceptionally well" according to the developmental pediatrician. We were starting to scale back on therapies. He's talking in 49 word sentences*.

Then we went to the regular 3 month check with the pediatric gastroenterologist. (Usually we call him the "GI doc," or "Dr. Patel," but gastroenterologist is such a cool word.)

The first thing he said when he walked into the room? "What happened to his weight?!?" Eddie is back off the charts at 24 pounds, 6 ounces.

Then we got into the whole pooing issue. I haven't written about it much here, figuring that no one wants to hear about poo. But now that it's become an issue, I guess I'll talk. The long and short of it is that for the last 2+ years, the kid has been constipated an average of 5 days a week. After having a very, very upsetting (screaming, crying, etc.) poo or two, we go to the total opposite of constipation for a few days before starting the cycle again. We are the type of people who keep a stock of pediatric enemas because you never know when you'll need to break one out.

I guess that's not normal.

He has been on Miralax since the summer of '08, and on Milk of Magnesia since the summer of '09. He takes both daily. The dosages have been increased a few times, and he does better for a little while before just going back to the constipation.

So, now he's gotten old enough and it's gotten persistent enough to look a little more closely at what's going on. First, the GI doc sent him in for a barium enema to see if his colon looked to be misshapen in any way. That was done last Monday, and actually wasn't as difficult as I had feared. Pop came with me and Eddie, and the whole test only lasted 30 minutes or so. The best part was that instead of using barium, they used something else that basically cleaned him out instead of plugging him up like barium would have done.

That test came back normal, which is good news in that his colon is normally shaped (yay?), but bad news in that it doesn't give us a direction to go in for treatment.

The next thing we have lined up is a colon biopsy on September 8. Eddie will go in to day surgery at Children's Healthcare of Atlanta (it's sad when you can tell the nurse you don't need directions, that you've been many times before) for a very quick suction sample of his colon. No anesthesia will be involved, and he won't feel pain, but there will be bleeding so we'll be there a good part of the day just to be sure that there are no complications.

With the biopsy, what GI doc is looking for is proof of Hirschsprung's Disease (HD), which he seems to think is the most likely cause of Eddie's problems. Hirschsprung's is when the a portion of the colon is lacking nerve cells that tell the baby to poo. Generally in HD, the barium enema would have shown some abnormality, which we didn't see, but the biopsy is the only way to confirm or rule out the HD diagnosis.

If the GI doc's prediction of HD is right, the only cure is surgery. And, sadly, this wouldn't be a day surgery. We'd be looking at "3 to 7 days or more" in the hospital, all depending on how the surgery and recovery goes. This is a very scary thought, but if that would mean that this problem is gone, it'd be a bit of a relief as well.

Now all we can do is wait for the biopsy results, which should be in a few days after the test. If the biopsy comes back normal, the GI doc was very clear that even if the barium enema and biopsy come back normal, we will still need to figure out a new treatment to more aggressively deal with the constipation. I'm still not clear on what this could be, but I guess we may find out.

* Probably an exaggeration.