Grrrrr

We may not be going backwards, but we aren't moving forward very darn fast either. It's two steps forward and one step back ... or is it one step forward and two steps back? Mark has only been there three days and he is already getting irritated with the way things are progressing. Glad to know it's not just me. Jack does well for the majority of the day, but he continues to have periods of respiratory distress that just knock him down for hours. Mark is getting mixed messages. One group of docs tells him that today's x-ray is unchanged and another group tells him that it is worse. It's very frustrating because there are too many "teams" involved and they all defer to the other and the end result is not a damn thing is getting done. The CT surgeon told Mark that the x-ray looked worse and that he thinks they should get a CAT scan of the chest within the next few days. Why do we have to wait a few days? Problem is, Jack is a "victim" of politics. Technically, Jack is "owned" by orthopedics, but from their perspective he is doing fine (incision looks great -- that's all they look at). Even though Jack's issues are not orthopedic, all the other specialties have to get ortho's "OK" to make decisions regarding Jack. It is total B.S. I wish ortho would sign off and let another team take over at this point. (we need Dr. Schuler ... she is the one person who could always make things happen :-(

I thought putting 1500 miles between me, Jack and the team of docs would keep me calmer .... it has not. Jack is not in the hospital because he necessarily needs to be there, it's because no one will take charge, figure out what the problem is and come up with a plan. Mark is going to strongly suggest that the chest CT be done tomorrow and someone needs to tell us why Jack is still draining chyle, why he is having periods of respiratory distress and what they are going to do to get him better and out of the hospital. He's also going to suggest they have a pow-wow and get on the same page. It is unlikely that I will be going back to St. Louis on Thursday because there is no need for both of us to be sitting at the hospital.

In case anyone is wondering ... no, I don't wish we'd had the surgery done in Phoenix. I don't question the fact that the surgery was performed by one of the best and that the results were fabulous. Problem is being on the "floor" and the politics I mentioned. In the past, Jack was discharged from the PICU - an entirely different experience. I knew when we were headed to the floor that there would be frustrations and problems.

Mommy is so sorry Jack .....