Wednesday, May 21, 2008

WEDNESDAY, MAY 21, 2008 04:44 PM, CDT

The last few days have been a whirlwind of activity.

There was some talk of trying Sam on a drug called Octreotide to help reduce the amount of fluid loss that Sam experiences in his stools. After much research and debate they have decided that this is not a good option for Sam right now. Octreotide is not really meant to be a long term drug, and the longest that have had anyone on it in Milwaukee was 6 months. Sam really would not get any benefit from it other than a reduction in his stool output, and the relative reduction in fluid intake needed.

Sam is anemic again, basically because he just isn't getting any iron. Most babies would get formula fortified with Iron, but since Sam doesn't ingest much formula he is not getting enough Iron. On Friday he will have an Iron absorption test to see if Iron administered orally is absorbed my his body. If it doesn't absorb than we will need to rely on an infusion of iron into his bloodstream to supply him with the necessary Iron. There are some risks with having to do this, but it is still much less risky than having to do repeated blood transfusions as we have had to do up until now.

We will be bypassing Children's Hospital Fox Valley on our way home (sorry everyone). The original plan was for Sam to spend a few weeks in Milwaukee, then transfer to Fox Valley, then head home. This week they have decided to send Sam home directly from Milwaukee. They are still working to finalize all of the details with our home care company, but it sounds like we will be heading home on Wednesday of next week. Things are going to be a little more complex for us than they originally thought, but we will manage and be glad to have everyone back home.

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