Sometimes its so frustrating being here, especially when your on the regular floor. We are normally on the step down ICU unit but b/c the hospital is so crazed with the swine flu there are no beds upstairs. I honestly don't know how the parents stay here months at a time b/c I am here two days and and so frustrated.

Our main reason for being here is to rule out a line infections vs. site infection and a new gj feeding tube. We got the new tube on Friday. The new pedi. called first thing in the morning to check on things (I was sure he was have quit but he actually thought it was comical, perfect fit for us :) He had made many phones calls to the drs. here trying to get a longer j tube placed which is what our long term plan was so why not get it done now. After his many phones, IR (dept. who places the tube) still had no idea about the request for the long tube. Grrrr
Luckily the department knows Avery pretty well and just by me asking they put one in.


Our reason for putting the long tube in was to bypass more of his small intestines in hopes of him tolerating more feeds so we can ultimately get him off of TPN. While the TPN has been great for his nutrition is comes with too many risks. So my goal is to get Avery back to complete j feeds and off TPN. May or may not be realistic but certainly worth trying.

Still his site is red and pussy and they have not taken out the needle or changed the dressing to swab it. We have been here since Thurs. night and they still cannot make a decision on what to do. I finally told them that this needle needs to come out to let the site heal before we have to put another one in (probably by Monday) They agreed but will not do so until the blood cultures come back which should be tonight.

The good news is we have started increasing his feeds without issues. My goal is to get him to 30cc per/hr. He came in at 15 cc so that would be double what he could tolerate and would mean the long tube is working. But it's still early in the game to see.

Hopefully we will be out of here by Monday before Avery catches the swine flu.

More good news is Isaiah was approved for a new bed which is awesome. He will be safe now and I can sleep at night knowing he will not hurt himself. I will post a link to the bed. It is super expensive (12K) so we are happy it got approved.

Rick is taking over this afternoon as I will be going home for the weekend.