Gracie in the hospital

Well, I haven't done very well with this so far... with no updates since February... and now not-so-good news. Miss Gracie was admitted on Thursday morning due to her GI issues. She is doing well and should be able to go home Saturday and then will return for an outpatient colonoscopy (and who knows what else) next week.

I previously posted about our intent to start a blended diet... that never got off the ground. Unfortunately, since Gracie has such a difficult time tolerating her feeds, it was really impossible to make a safe attempt at it... too much risk with getting her off balance with minerals, etc. We did try to bolus her really small volumes (feed her a set volume by gravity over a short period of time - - this simulates a more "natural" feeding regimen as opposed to her continuous feeds) but this did not work well either.

She had a busy week - - starting with a wonderful visit with our friends Mike and Natalie and their three kids on Sunday, which she not only tolerated but had a great time. Then Tuesday she had a two-hour visit to the DHOH (Deaf and Hard of Hearing) preschool class... a HUGE success. But... at the same time as all this "wonderful" she began having a hard time tolerating feedings and grew more and more quiet as the week progressed. (Interestingly enough, she was OFF her feeds during those great parts of her day...)
By Wednesday afternoon, she was having such a hard time tolerating her feeds that we dropped her to straight Pedialyte and that still made her uncomfortable. Wednesday night she spiked a high fever and we knew that she was on the verge of dehydration... so we called her GI doc and she was admitted.

On Thursday evening she had an X-ray that showed a strange loop in her small bowel... this did not show on a film she had in the fall. So, instead of a colonoscopy on Friday as planned, her doc wanted to have an upper GI study w/ small bowel follow-through. (Barium gets injected into her G-tube and then a series of films (X-ray and ultrasound) are taken to watch the progress.) Unlike the Gastric Emptying Study, Gracie did not have to remain on the table the entire time... thank goodness! The entire process took nearly three hours today and she was an amazing little trooper. Lots of waiting - - back and forth from her KidKart to the table.

The study was not conclusive... there weren't any true blockages or thickening in the small bowel as feared from the oddities in the film from Thursday. The study did reveal a hiatal hernia, a possible polyp (which was not a surprise as she has presented with a couple of tiny polyps in the past) and some sort of small bowel follow-through defect - - this was determined when the barium simply stopped moving through the bowel over an hour into the study and the only thing that made it push through was when more barium was injected to push it along. This leaves me wondering if she is constantly having her feedings get "stuck" and thus, never feels good and is super sensitive to even the tiniest of volumes going into her tummy.

So... the plan is now to have a colonoscopy and to take a look at the hernia next week. (Because unfortunately, the anesthesiologist on call this weekend doesn't do "elective" procedures on the weekend... DON'T get me started on how I feel about that... so instead of getting it done while she's already got an IV in and is here... we will take her home and bring her back for yet another poke... I hate that.)

Clearly, the hernia won't cause the diarrhea... but it would definitely contribute to feeding discomfort. The diarrhea will be addressed by sending a sample to the state lab for a very thorough work-up as the state lab can run tests for all the strange bugs, whereas the hospital lab only runs the "standard" tests - - all of which have previously been negative.

I will update when there is news. Please cross your fingers that we can get to the bottom of this for her... it's been such a battle for well over a year, and because it makes her feel so awful, it truly has become dehabilitating... and now she has lost a total of five pounds from her highest weight.

On a happier note... Gracie has handled this stay exceptionally well. Many smiles... some attempts at signing - - even with only one working hand due to the IV... a much better tolerated stay than any in the past. We are very proud of her:)
Also, coming to the hospital is always like a reunion of sorts. Since we haven't been in (other than out-patient procedures) since December 2006, it was great fun to catch-up with our hospital family. Many got to see/meet Preston for the first time - - as I brought him in for a bit today to see where we are - - and especially to see Gracie. I stayed home with him last night while John stayed with Gracie. This morning, Preston was very quiet - - which is unusual - - and seemed to be looking for his Daddy and his sister. Too sweet.