Alex and Maddy

Alex and Maddy

Wednesday, December 31, 2008

We had our VERY FAVORITE nightime nurse last night. Alex slept from 5:00 yesterday until 7:30 this morning. I fell asleep around 9:00 and slept till 7:00. I still don't feel 100%, but mentally I feel much better.

As for Alex, he is still struggling. Our temp is still hanging in the 101- 102 range. He pancreas is still hanging in the 400's. We had to go up on his oxygen overnight. His oxygen sats dropped back to 93, which in a normal kid wouldn't be very worrisome, but Dr. Koenig does not like them that low.

Our two main areas of concern this morning. One he is spilling large amounts of protein in his urine. We are not sure if it is related to the flu or something mito related that is cropping up because he is sick. The biggest concern this morning is that his platelet count is extremely low. We have never seen this before. The fact that he is now transfusion dependent and he now has low platelets has Dr. Koenig calling in a hematologis​t to consult. One of the mitochondri​al syndromes she is considering affects your bone marrow and your pancreas. So she really wants that checked out.

I believe that is all for now. I will update later if anything changes.

I hope everyone has a sfae and Happy New Year!

Ali

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