Family Vacation

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Sunday, May 22, 2011

It's not a food allergy...

There is good news, kind of bad news and frustrating. The good news is that the Doctors think they have finally figure out what is wrong with Nathan. The kind of bad news is that he will neer surgery to fix it. The frustrating news is that we are waiting to be transferred to Boston to decide how to proceede.

The good news
The doctors were quick to say they thought Nathan had *another* virus and this episode of vomiting/diarrhea would pass. I knew that was wrong. I knew it wasn't just another virus. It's not very likely that he's had virus and virus after virus since February. I knew there had to be more to this mystery illness. I asked for an abdominal ultrasound, the doctor said his last one looked fine. That's strange mostly because he's never had one before - so imagine my suprise to find out it was fine! She reviewed hsi records and realized I was right, he's never had one, so it couldn't have been fine. She ordered one just to make me happy, not because she thought he needed one. She said if it was negative they would do a CT (also just to make me happy, and because the pediatrician said it was worth a shot) to look at his belly that way. Well, the ultrasound revealed interesting findings so they did the CT. The nurse who went down with us was amazing - she sang to Nathan the whole time he was on the table. He even told her what animals to sing and she did, even though elephant was one of the animals!

Well, the CT also revelaed interesting things. The contrast that we had given him an hour before the study was in his stomach and the first part of his small intestine, it wasn't in the middle part of his small intestine and then it was in the last part of his intestine - this would explain the diarrhea. If the findings are correct it means he has a fistula in his intestine. That means that two pieces of small intestine are connected where they shouldn't be connected. That is causing his food to go through him way to fast, because it's skipping most of his intestine, and not be absorbed - diarrhea.

Also, they saw a choledocal cyst, type I. That means a cyst is in his common bile duct going down into his small intestine from his gallbaldder and pancreas. The cyst is what is causing the vomiting, diarrhea, and abdominal pain. The risk of the cys is that it can rupture and spill bile into his peritoneal cavity and that can make him septic, or it can cause an infection in his liver or pancreas. So the cyst needs to come out.

The kind of bad news
If the fistual really is there it will need to be repaired. The fistula could just have been an error and a weird fiding from his weird anatomy. He needs another study to determine if it's really there or not. And the cyst needs to come out no matter what.

The frustrating news
We want to go to Boston since we're pretty sure he needs surgery. Our surgeon is in Boston, all the doctors we love are in Boston. All the doctors we trust are in Boston. We want to be in Boston. The doctors here are working on a transfer but it's not as easy as I would like it to be. I asked to be discharged with the knowledge that I will just take him there myself and just go to the ER. The doctors here aren't sure about that. We won't know what will happen until tomorrow when our surgeon is back. She wasn't on this weekend and the covering resident in Boston wasn't comfortable making any decisions about Nathan without her since his history is so complicated. So now we wait.

1 comment:

  1. Laura I just found your blog via Julie's blog. I don't keep up with Facebook enough to know exactly what's happening NOW but please know that I hope and pray that you're getting what you need for Nathan. You are one tough Momma, though, and I know that if anyone can get him the care he needs, you can.