colon motility and a/d mammometry testing done - any thoughts?

February 11, 2005

Hi All,

I have lots of emails to catch up on but I thought I'd let you know we

" survived " our trip to Boston although it was an absolute emotional

rollercoaster once the medical stuff began.

But, first, of course, we took in the Children's Museum and the Sea Aquarium -

very much fun!

The intestinal motility testing was very difficult altho the staff and docs were

awesome. After the placement of the first set of wires and tubes up Asher's bum

(he was anesthetized during this process), the motility GI doc came out shaking

his head and saying he'd rarely seen such awful distention in a colon and that

he was doubtful that Asher would show much motility on the tests. He expressed

concern that we would not even be able to do a cecostomy but that he would need

a colostomy (which was overwhelming to me b/c a cecostomy is " just " another tube

which helps flush the poop out Asher's bum, and the colostomy is the " bag " on

the outside). Then, he had the lower GI motility testing where they placed the

pressure measurements in the intestine and then see what the peristalsis looks

like and Asher actually responded really well to dulcolax. So, maybe we can use

a stimulant medication that will go through his g tube and help stimulate his

gut to poop. He said it wasn't a normal test response but it wasn't nearly as

abnormal as he expected. Of course, then, we were all wondering (docs included)

WHY Asher is so distended. During the test, the docs actually were hovering

around Asher with concern b/c his belly was getting bigger and bigger and this

doesn't usually happen. But, upon adding the dulcolax directly into his colon

through the tube, Asher had such a humongous explosive poop that (this is

gross!) that he actually shot it across the room and hit the nurse (Asher was

quite proud! All in all, they got 822 cc's of stool out of him (huge amount

for a little guy). SO...... they suggested a small intestine motility test

which, after major insurance haggles, we managed to get approved and he had the

NEXT DAY (amazing that it all fell into place).

Asher was again anesthetized and I knew something was wrong when the GI doc

hadn't come out after about 90 minutes (it was supposed to take 45 minutes).

Finally, the doc came out

and told me that Asher had needed to be intubated b/c his chest became extremely

" tight " during the operation and he wasn't getting enough oxygen. And, that

they'd had a difficult time placing all the leads. Turns out that Asher actually

has an " extra " loop in his large intestine that will make placing a cecostomy a

major abdominal surgery rather than a laproscopic procedure. Anyhow, we spent

all day measuring the contractions of Asher's small intestine and, preliminary

thoughts from the doctors, is that it's " not bad " , but that there's

disorganization in Asher's contractions. He has them but they don'tnecessarily

move in the right direction with the right timing to move everything through his

intestines.

So.... we will know more on Tuesday. The docs have to actually measure the waves

on the printouts and see what they find.

Then, Asher started running a fever right before we were due to leave the

testing. And a bad cough. So, we were almost admitted but our mito expert who is

in the hospital (thank God!) said we could go across the street to our hotel

and, if Asher's fever, hit 101 we would have to come back to the ER. Thankfully,

his fever is gone, but he is one pale and wiped out little guy. And, as for me,

I hold it together during the whole difficult time (I think my adrenaline is

racing) but then I will probably fall apart this weekend. We are home now! And

it is SO SO SO good to be home.

Thanks for listening!

Anne R

February 11, 2005