Tuesday, May 6, 2008

Back From Calgary & GI Update

We are back from Calgary. The ride home was uneventful to say the least. Mila slept the first 3/4 of the drive, and Robby slept the middle half. I bought them both toys at Walmart and McDonald's at a rest stop after an hour, and that kept them quite happy for most of the trip. The most exciting part ( ahahha ) was Mila almost pulling her tube out. I pulled over into an exit lane and taped that sucker waaaaaaaaaayyyy down.

Robby had a blast! I think he was ready to go when we left, though.

Mila seems to have resumed sleeping nicely in her own bed. YAY! This coincides with my noticing that Hey! She's got FOUR MOLARS. Gee, that couldn't have been it. She is still coughing and gagging and hacking though, especially at night. I may bring her to the ped tomorrow for a quick check of ears & sinuses ( children with NG tubes may be more prone to these types of infections ).

We also had Mila's Upper GI with follow through today. It was a VERY interesting test. I'm glad that she is tube fed, as there is NO WAY she was going to drink the barium. NONE. No way, no how, no thank you! Luckily, the radiologist doctor - Dave - was there, and he remembers Mila from waaaaaaaaaay back when they did her first upper GI. He's also been there for all of her chest xrays after heart surgery, her barium swallow tests, etc.

The very first part of the test was easy - they simply squirted barium into her NG and watched it flow into her stomach. Then they turned her back and forth on the table to coat her stomach evenly. Next, we waited to see the barium enter the small intestine.

And waited.

And waited.

After 15 minutes or so, they let us go and sit in the waiting room so that I could calm Mila down. Her stomach was not emptying at all. The radiologist made several comments that her motility was very very slow, and its rare that anyone has to go and wait.

Luckily, after some waiting with Mila in another room, enough of the barium had moved for them to see pictures of her small intestine. Its fine - no kinks, no trouble spots, no malrotation.

However, DGE ( delayed gastric emptying ) would explain LOTS of Mila's symptoms lately, and its something that I have though she has had for a long time. I wanted the doctors to test her for it the very very first time she was in the hospital - its written on several of my cards, etc, from AUGUST! It was never considered as a possibility. Obviously, that's changed. The radiologist said that it would be duly noted on her chart that the motility didn't seem to be there.

Hopefully, the DGE scan on the 16th will provide us with even more information. If DGE is the problem, its treatable with drugs! I would be willing to give Mila a month to eat more orally before considering the gtube IF she showed some improvement on a motility drug.

Anyhooo... onto the pictures!

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