Monday, September 8, 2008

Waiting, waiting, waiting

Well, it was a big day of waiting...we waited at the children's hospital and then they sent us to the adult gastroenterology clinic, four buildings away, and we waited there. Then we found out there was a mistake and we went back to the children's hospital and waited there. Then they finally took us back and we got her all prepped and we waited. Only to roll her all the way back through 4 buildings to the adult clinic for the procedure, where we waited. Then we went back to the children's hospital for recovery, where we waited. And now we are waiting for results. All together we waited from about 8:15 am until 3:30 pm...that is a lot of waiting!

So in between waiting they did the scope and the biopsy. And this doctor has yet another opinion...he thinks she has Cystic Fibrosis (never mind that it doesn't run in the family, that we know of, and she has no other symptoms); and that gave her pancreatitis. He said he didn't see a tumor but the front of her pancreas looks swollen and he thinks that is what they are seeing on the MRIs. He thinks the atrophy is just the pancreas shrinking back to it's normal size after being swollen from the pancreatitis.

It sounds like partially good news, but I've heard all kinds of crazy news and I don't really trust it anymore. All this thinking is making me nuts! I really don't care what they "think" it is anymore...pink bunnies, purple hippos, big tumor...it's all the same. I want to "know" what it is. He did get some cells from it. So will it be just pancreas cells, abnormal pancreas cells, tumor cells, cancer cells, cyst cells...we'll just wait some more and see. It will be good to at least know what it is, or isn't.

He did say we could get the genetic testing done for the Cystic Fibrosis (the doctor who saw nothing didn't do it like she said she would because it has to be preauthorized by insurance...no wonder we could never get those test results!) But this doctor said Cystic Fibrosis has no cure, so why bother because it's really expensive...we'll know if she has it if she starts having heart and lung problems. Nice. It occurs to me that she might like to know if she's a carrier before she has children, donates genetic material, little things like that. I guess the results of the biopsy will motivate us one way or the other...her pancreas should have fibrous tissue in it if she has Cystic Fibrosis bad enough to give her pancreatitis I would think. (There I go thinking now!)

It should be about 5 working days before we get the results. So, will it be diagnosis number one (big scary tumor let's remove it), number two (strange tumor never seen before that may be somehow making her pancreas atrophy), number three (nothing), or number four (Cystic Fibrosis that created pancreatitis)...we will just have to wait and see.

3 comments:

Hidden Jewel said...

Thanks for the update.

Kristi Erickson said...

Man, What a WILD ride!!!! Can't the doctors just learn to make up their minds?!!!! I'm STILL praying!!!

Becky said...

Waiting is hard! But in the wait, we become more like Jesus - at least I know that you do Alicia! So, wait we will! And we will all be praying the whole time! Hang tight!

Love,
Becky