Aaron's Hyper IgM Journey

Monday, September 1, 2014

Surviving August

Late July and all of August has been a whirlwind of events.  I don't think I can remember them all.  Aaron had one of his central lines taken out.  This should have been, and still is, a victory.  This should have been a time to celebrate.  On the contrary, he had the "minor" surgery and we drove home to Orlando (from Cincy).  His feet swelled up so badly that they looked like pieces of raw chicken with toenails.  He could barely walk.  The surgery site was extremely painful, his abdomen became very hard where the line was removed and his tummy and back were rapidly turning black.  After two days of being home, Aaron did not get better and I took him to Nemours ER.  What a huge mistake!!!!  They admitted him to the hospital and two separate doctors told me they did not feel comfortable treating him because he is too complicated.  They didn't have to tell me that twice.  If they aren't comfortable, than I am not either.  Aaron was on a medical flight the next day back to Cincinnati. 

This was Aaron's second flight in his life and both were medical flights to CCHMC.  The crew was amazing.  We had two pilots, a flight nurse, EMT, respiratory therapist, a general emergency nurse.  We required an ambulance on both ends of the flight to transport between hospitals and airplane.  Arriving in Cincinnati was a huge relief.

The next morning Aaron's doctor and the surgeon came in to evaluate him.  Their conclusion: Aaron is just fine!  The called it the world's largest bruise.  They said it will heal, and they were right.  A month and a half later and the surgery site is now fine. 

The trip was not completely a waste of a medical flight.  Aaron's vitals became out of control while we were there.  He required five blood pressure meds within a four hour time period and had to be placed on oxygen overnight.  Aaron's body is really taking a toll.  Two days later, we rented a car and drove home.

After being back home for a week, Aaron's eyes turned yellow.  His liver has been bad for a while and now his bilirubin is very elevated.  The doctor decided to take him off all the meds that we possible can.  These include his antiviral, antifungal, and antibacterial.  This scares me since he still has zero immune system.  I think it is making a difference since his eyes are no longer yellow.  We go to the hospital here in Orlando tomorrow to retest his labs.

August ended very positively.  Aaron began school.  He loves it.  I will post more about it in my next post.

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