Answers

I'm sorry for my long break.  It's been hard for me to think of what to say.  I feel like you've all heard it all before.  She's still sick, I'm still tired and trying to make sense of it all. 

We did get some answers from Abby's recent testing.  We fed her six hours through her stomach as sensors recorded the contractions of her intestines and belly.  She also had an endoscopy.  That showed that all of the previous ulcers had healed (Thank God!!).  Her NISSEN looked good and although she had some minor irritation in the part of the intestines right where the stomach empties, she looked generally good.  They took several biopsies, but that is a HUGE improvement from last time. 

As far as the other test goes, it could have showed that she had weak contractions of the intestines that didn't push food through effectively or possibly uncoordinated contractions that were equally ineffective.  What she had was very long periods of inactivity (which explained the swelling and pooling of food we see) but when it did work, it was fairly coordinated and likely strong enough.  That led to one very unpleasant answer.  This is neurological. 

We didn't want it to be that.  Her brain is simply not communicating with her belly consistently.  That is why she has long periods of not moving food through.  Then when she does send the signals, it seems to know what to do.  The Doctor said that it's a part  of her autonomic nervous system that controls it, and there is nothing we can do.  We are going to try to come up with a combination of medicines to make her less nauseous.  She also got a new G-J tube before we left.

When she left the hospital, she was so sick and pale.  She wretched and gagged.  We went to Virginia for the weekend to have Christmas with my family (the first time in many years).  I was so excited, but Abby was so sick that it was hard.  I wasn't sure why she was having such a consistently hard time. 

When we got home, I called the Dr. about Abby.  I was having an extremely difficult time getting her feedings in her.  She had formula in her stomach--which shouldn't be there and needed frequent venting and constant nausea medicines.  I still couldn't get her comfortable.  She looked awful.  The agreed to take a look at the tube placement.  We went back to the hospital on Wednesday.  Her J-tubing had looped in her stomach irritating it.  It also  wasn't far enough into the small intestines allowing her food to back up in her stomach.  They were able to reposition the tube.  She felt so much better.  She's still sick, but not even close to what we were dealing with.  That was definitely another answer.  I was so scared that she was just suddenly worse and there was nothing we could do for her.

Emily has had several seizures in the last week.  One as soon as we got to Virginia and sat down to lunch with my family.  She had 3 yesterday.  One of them lasted about 4 minutes with her hands thrashing around and her head turned to the left.  It was the first one I've seen like that.  I think we may need to adjust her medicines. 

Christmas is only 3 days away.  I can't wait.  I'm so excited to relax and do something normal.  I can't even tell you how happy I am to think about sitting with my kids as they slowly open presents.  I used to worry so much about what I would give kids that couldn't do what others do. 

This year, I've had a really hard time picking presents for them.  They are so much older now, and it was hard to buy for them.  And I didn't care. I didn't get cards out, but that's okay too.  What I will do is sit with my kids and watch their little hands tear paper.  I will think about a baby born more than 2000 years ago.  The child that came so that I can be sure that no matter what we face, our hope is in Him. 

Merry, Merry Christmas, my friends.  I pray that each of you holds in your heart only what is important as we celebrate the birth of our Lord.