Alex and Maddy

Alex and Maddy

Sunday, January 11, 2009

This will be short...It'​s past my bedtime!

Tod​ay was one of the most frustrating days I've had in the hospital. The residents this month are not as good as the previous months. Across the board they just are not on top of things. It is a struggle I have been fighting this whole stay. They just are not assertive about getting things done. Two things needed to happen for us to come home tomorrow according to Dr. Koenig. One, we needed to meet with the surgeon and two, we needed a transfusion. Neither has happened. My frustration though was about the transfusion. As i posted yesterday, Alex has been having trouble with his blood sugars. After a very short time off his TPN he is becoming extremely hypoglycemi​c. In order to transfuse, we have to shut off his TPN. Early on today we discussed the fact that this transfusion would be difficult. We had two options. We could start a regular IV to run dextrose through while we transfused or we could montior blood sugars and stop the transfuse to bolus dextrose as needed and then restart the transfusion. I agreed to allow them to start an IV, but told the nurses I would not allow Alex to be stuck more then a few times. So needless to say after 4 sticks, it was determined we could not start an IV. Not really a shock this is precisely the reason we have a port. The nurse called the doctor to get the go ahead to use our backup plan of bolusing dextrose as needed. She would not allow us to start the transfusion. Her reasoning....​She wants Dr. Koenig and the pharmacist in the building. Mad does not even begin to explain my feelings! A transfusion takes 4 hours once the blood gets up here. Then we have to watch Alex for a little while to make sure he is reaction free. So we won't be home until very late tomorrow or on Tuesday.

In other news...Jen, Missy and I have decided to start a team to walk in a fundraiser to raise money for a cure for mito. More info to come in the next few days, but I hope you will consider sponsoring us as we fight to give our boys the best chance at life.


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