Aaron's Hyper IgM Journey

Saturday, September 15, 2012

Test Results

The results are coming in from all the studies and still little answers.  Here is what we know.

All the blood and stool cultures are negative.  He is even negative for Norovirus and Campylobacter, which he had been positive for in the past.  He had a full body scan to detect anything that might be missed from blood tests.  Everything looks great.  He had a full GI scope under anesthesia with a biopsy.  The initial scope looked good accept for a small red area.  The GI is inflamed which is causing the mucus.  Today, the initial biopsy results show that it does not look like GVH.  However, his colon has marked atrophy (deteriorated).  He has barely eaten and drinks so little for such a long time that his GI tract is shutting down.  They also think that the colon has some scarring as a result of the Norovirus.  A full eye exam shows no signs of infection or GVH.

What we do know:  Aaron is screaming and crying throughout the day (not normal for him at all).  He is itching horribly without relief.  His skin GVH is flaring up and dying down throughout the day.  He has a fever almost every day.

The doctors think that the diarrhea is occurring because his colon does not work.  Everything that goes in him comes right out without being absorbed.  They have put him on an NG tube to try and get the GI tract working again.  He is also on IV nutrition since he is not absorbing nutrients himself.  This problem will take a very long time to resolve.

He has an infection on his tongue that does not clear up.  It is likely thrush, but they have been treating it without success.  This could be causing discomfort in his mouth and possibly all down his throat.  This could be one reason he does not want to eat. 

Although, we should be sighing with some relief, I am not.  The doctors have no idea why he has fevers and they do not know why his body is shutting down. 

A HUGE thank you to all of you.  I asked for help and I am amazed at the response from you all.  Some of you have great ideas to get him going and others of you offer such words of encouragement.  I can only hope to be able to return the favors to each of you if you ever have a time of need.  THANK YOU!!!

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