Molly’s Health

As we have brought up many times before, Molly has had tummy issues from day one. Acid reflux, constipation, lactose intolerance, something else? We don’t fully know. But we do know she is uncomfortable a lot of the time. So we started down the path of figuring this whole thing out. First step, meet with a GI specialist. This would start us down a series of tests to isolate what isn’t working and how we can get her sleeping more comfortably. Oh yeah, that is the most obvious part she doesn’t sleep. For 3 years now, she has never slept well.

Test #1: Barium swallow test (picture up top): Molly had to drink a Barium milkshake while getting multiple X-rays of her upper digestive track. Leaks? Swallow Problems? Anything obvious? Nope...all good. Though the test was considered invalid because she didn’t drink enough of the barium. I think that is nonsense, she hated it and braved through drinking a lot of it. Good for her.

Test #1 part B: Blood and poop tests. Molly had to get her blood drawn twice and poop in a cup. Nothing fun. But she did it with little fuss. After her first blood test came back with two alarming results, she had to do it again to make sure the test were correct (they were not). Both times, she didn’t so much as whine when getting a needle in her arm and many tubes of blood drawn. And who doesn’t love to poop in a cup? The best part of the poop test was it had to get to the hospital while it was still fresh. As luck would have it Molly pooped at just the time when we couldn’t take it up...but as always Grandma Myra saved the day and successfully delivered the goods in time.

Test #2: Allergy test: This has been a long time in coming. Basic scratch tests of the most common allergens. Dairy, nuts, oranges, pollen, lots of other things. Passed with flying colors. What does this mean? Really only that she won’t go into anaphylactic shock over anything. Very good news. But still no answer.

Test #3: After compiling the last two test and meeting with the GI specialist again, we concluded we do not know anything more than when we started. BUT, we have eliminated a lot of variables, which is the goal of this process. Next, a lower GI ultrasound to look for anything else that hasn’t been considered. So back to the hospital for a quick ultrasound of all the lower GI organs. And, as expected, all was well. That of course is very good news and eliminates a bunch more variables.

Test #4: The big one. We knew this is where we would end up. The Endoscopy. Before even visiting the GI specialist, it was the presumption of Molly’s pediatrician that this is the test that would have to be preformed to find anything conclusive. But because it is a much more invasive test, we did the other tests first to eliminate anything obvious. This test involves putting Molly under general anesthesia and running a camera and collection tube down her throat and into her stomach. Along with imagery of potential “problem” areas, several biopsies are done to check for, uhm, other things, I guess? Following that, a Colonoscopy was performed to check out any possible issues for her constipation. In summary, a intense lower GI study. Last, after the scoping is done, a tube is placed through her nose and down her Esophagus. This is a pH test. The tube is connected to a computer and it measures her acid and pressure levels over a 24 hour period.

It was quite a thing.

We arrived at Rocky Mountain Hospital for Children at 6am. Wait. Back-up. For the full context of the last few days, we started Wednesday night going to the Boulder Dinner Theater to see the Wizard of Oz as a belated celebration of Shae’s birthday with Caden, Grandma, and Beth. Molly stayed with Anne since it was a late night affair and we wouldn’t know how she would be feeling being off of her acid reflux medication for so long. Anyway, great time, Caden had a blast and we were out until 11 that night. Caden went home with Grandma so we could focus on Molly. The next morning we get up at 5am and give Molly her first enema (that worked fast) and head to the hospital for check-in. Molly is happy enough, though a little under-slept and cranky (no food or drink allowed). We go through the prep work, meet the doctors and do enema #2 which was just as unpleasant as the first. One thing for Mom and Dad, we got a tutorial on the pH test computer. For the next 24 hours after the test, we have to monitor Molly and enter in the computer when she eats, stops eating, lays down, stands-up, has tummy aches, or reflux related issues (of which she had none of course).

Then it gets a little intense. We all roll Molly into the OR and say nice words to her as they put a little mask on her and watch her fall unconscious in less than a minute. That was unsettling for us to watch happen and many tears were shed by Mommy. All of 30 minutes later, the doctor comes out and says she is up and really needs us (I guess usually, there is a span of time where we would sit with her and wait for her to wake-up). We find Molly screaming her head off with a tube out her nose, utter confusion on her face and restraints on her arms to keep her from pulling that tube out. Took a while to get her settled. Doctor gives us the first good news and said she saw nothing concerning (in some cases of Celiac disease; one of the possible items we were looking for, the damage is pretty apparent). All other results will come a week later.

Now comes the hard part.

For the 24 hour PH test, we opted to stay in the hospital through the day and overnight during this test. The thinking here is if she manages to pull it out (there was 20 cm of it down her throat), they can get back in (although not made clear to us, the 24 hour clock would start over if this happens). Molly was mighty unhappy with this tube (who wouldn’t be?). Not so much pain, but itching and irritation and a mess of tape on her face and in her hair. So for the next 24 hours, we watched A LOT of TV, did a lot of playing, eating and anything Molly wanted to distract her. Through the night, we had to monitor her as she slept (and she slept quite well actually, even with restraints) so this tube did not get disrupted (we were NOT going to do this again). In retrospect, it really wasn’t that bad and Molly was a rock star. But damn we are exhausted.

Results coming soon. Here are some pictures of the last 24 hours. They are from our cell phones, so forgive the quality and quantity as we were bored in the hospital! (click here).

UPDATED 8/30/13

Results are in for the test mentioned above. They are both not surprising and vindicating at the same time. The biopsies did not turn up anything unusual, some indication of an “unknown” allergy presented in her colon, but nothing that got the doctors attention. More interesting, she shows no indication of an actual lactose intolerance....just probably means she has a sensitivity and thus nothing will change with her diet. And there is no indication of Celiacs. All very good news. What was not so good news, but vindicating in that we did all this for something came out of the PH test. The 24 hour test did not indicate anything much as far as acid levels, but it did show A LOT as far as reflux. The test included a pressure sensor which measured instances of reflux over a 24 hour period. Molly had 125 instances of reflux over the course of this test. And that is an awful lot by any standard.

So what does that mean?

Well we are not surprised she has reflux, what was interesting is that we never noticed it during the actual test. Throughout the test, we were supposed to indicate on the computer when she showed signs of reflux. We never saw even one of those. So this tells us she is suffering discomfort silently--aptly termed Silent Reflux and thus makes sense for why she can’t sleep. So the course of action now is to isolate this as a cause of her overall discomfort. We are upping her reflux medication, adding back in a daily laxative as reflux and constipation can be correlated, and adding in a new medication that is suppose to line her esophagus and help with her discomfort. All we can say now is, we will see...

Molly during test #1...less than happy