2 weeks and counting

2 weeks in the hospital. I know many people stay longer but this is our longest stay yet and I am more than ready to go home. Yesterday was the much anticipated family conference. It happened a day later then planned and was more conference and less family, but finally we got her major doctors in one room at the same time to talk about Audrey's plan. Here is what they came up with:
1. Audrey has a "J-shaped" stomach. Shouldn't impair feeding or be affected by her g-tube. Not the reason why her stomach doesn't work.
2. Her stomach and small intestine definitely have dysmotility. Her stomach doesn't seem to work at all and everything else takes forever to get through the small intestine.
3. On top of her dysmotility she has this altered pain sensitivity. She seems to be lacking (or they aren't working) the nerves which turn off the pain signals. We had suspected this as she is still in extreme discomfort from her g-tube at the insertion site.This is why she has so much pain at a higher rate of feeds.

So given all this Audrey is at 12ml/hr of feeding. She is up to full strength but has too much pain when we go above 12. Her goal rate is 35ml/hr. Our plan now is a new medication to help with the pain. It is odd to give an antidepressant to a 2 year old for pain, but I understand the chemical process and why it may help. The medicine is not without side effects and reading them made me have double and triple thoughts, but ultimately we have to do something for her! We are also going home on TPN with her central line. This was exactly what I wanted to avoid. We have enough trouble keeping her well, now we have a line to worry about infections too. The thought of trying to care for her and still encourage her normal play and growth while hooked up to a feeding pump and IV pump and sometimes oxygen is just too much for me to contemplate. Before she carried everything in her backpack but that was as much weight as she can handle. She definitely can't carry a new backpack with an IV pump and TPN bag. Not sure how we will figure this out. It was presented as a choice but our alternative is to stay in the hospital until she gets to full feeds which they warn me may not happen. So there really is no choice. Before we go home the GI doctors want her on half feeds. So in the next few days we have to get her up another 5ml/hr which may prove to be impossible for her. I guess we will find out.

At least she is feeling better. Her weight is going up and she seems happier. Below are some pictures of her having fun. My fingers, legs and toes are crossed that she tolerates the increased rate and is able to go home soon. Wouldn't it be great if she made it home by mother's day??

She loves her tubie friend Cat! Cat has been very helpful for Audrey when she is scared of all these medical procedures.

Silly girl! Who knew a balloon covered in glitter would be such entertainment.  Needless to say she will have glitter everywhere for days!

Do not leave her unsupervised with a pen! She drew all over her PICC dressing too if you can see it.