GI Updates

Finn first saw a GI doctor at the end of May.  He ended up there after I told his pulmo about his recurring vomiting episodes.  I have struggled with these episodes as they are not consistent, have no common denominator that I can identify, and they ebb and flow.  He can go for weeks and be just fine, and then out of no where it'll crop up on us and he'll have several bad episodes.  For a good part of June and early July, Finn did well.  And over the month of August he started to have bad moments again.  We had a follow-up appointment with the GI doctor at the end of the month and I went in not knowing what I was going to say.  I have had concerns about putting him through unnecessary procedures, as he has enough procedures already.  But I knew that if I told her that what we had tried in the spring did not seem to work, that we would be looking at yet another procedure.  However, Finn losing his hot dog all over my foot the night before definitely confirmed to me that we still have a problem.  That and the carpet cleaning bills from both May and August.  Yep, carpet cleaning every 3 months.  Not good.

After waiting for nearly an hour and half in our little tiny appointment room (don't even get me started on that one), we finally got to talk to the doctor.  I was honest and told her that while his episodes have changed in some respects, the fact remains that he still has them.  It was at that point that she indicated that she wanted to go ahead with further testing.

Soooooo exciting!  Children's Hospital Colorado has opened their own clinic just 20 minutes from our house!!  This means that we'll never have to go to Denver again.  Well, not never.  If he's ever admitted, that'll still be in Denver and if he has to undergo anesthia for anything (such as an endoscopy) that will also have to be in Denver as he is considered a high-risk patient.  But other than that, we can do it all HERE!!  Amazing!

It took guts for me to express my reticence about these procedures with her.  For example, I don't want to do an endoscopy just to wind up with "normal" results.  The stress of going through the endoscopy is not worth it to me.  (Finn on anesthesia is my worst nightmare!)  So after some conversation, she agreed to go ahead with other tests first.  After the results come in on these two tests, we will decide if we are going ahead with an endoscopy.  That made me feel better.  The other thing that she said that I had no thought about was her concern about damage to his esophagus.  Basically, if he is having uncontrolled reflux there could be damage occurring an that would be something that we need to find out.  So, Reid and I talked and decided to go ahead with the testing.  The poor kid does throw up A LOT and if we can help him, it'd be nice to know.

So, the morning of September 18th we went in bright and early for a "gastric emptying study".  Basically, they put some radioactive liquid in his Ensure which he drank and then they used a camera to track it as it traveled through his stomach.  He had to sit strapped into his carseat on the x-ray table for an hour, so we put Lilo and Stitch in (his favorite movie) and I sat next to him.  He was a gem!  At the end of the hour, he had not quite digested 50% of his drink so we had to come back an hour later to take another picture (just 1 minute long that time).  Two days later we got the results.

The GI doctor indicated that the gastric emptying study showed slow motility at both the 1 hour and 2 hour intervals.  In other words, he food isn't digesting as fast as it should and remains in his tummy.  She prescribed bethanechol (a drug to help loosen the digestive muscles and allow food to go through more quickly) to be taken 3 times a day.  Thankfully, it's not a large dose and has no real flavor so Finn doesn't mind it at all.  In fact, he calls it his "yummy water".  The downside is that it is a refrigerated medication and with the mid-day dose......well, let's just say we had a long day the other day and ate lunch out of the house only to come home and find that I had completely forgotten about that dose of medication.  So, I have some logistics to work on with that.  :)

Last week Finn did his second GI test--the Upper GI.  This test consisted of swallowing barium and then doing a series of x-rays.  The test would reveal any structural abnormalities with his upper digestive system.  Finn did NOT like the barium at all--even with the fruit punch flavoring.  And he was not a fan of being held down for the test.  But they got it done and his results were completely normal.

Waiting (and waiting) for the doctor

So, that leaves us back at the beginning.  At this point the GI doctor is waiting for me to call back when we're ready to go ahead with the endoscopy.  I personally want to give the bethanechol a couple of months to see how we feel about it.  I talked to his CF doctor about the procedure this past week and she feels that it would be a worthwhile exam, but she does understand my concerns and is seems to think that it's ok to give things just a little more time.  So for now, we're waiting and watching and hoping that some how we can give this little side problem the old heave-ho.  We shall see!