Aaron's Hyper IgM Journey

Wednesday, September 5, 2012

Complications and lackIng sleep

Things just don't seem to be letting up in the Wolsey house.  

Aaron had his surgery.  He was an add on, since the nurse breaking his central line was not a scheduled event.  They made him stop eating at midnight but did not get him into the OR until after 2pm the next day.  He was begging for food and milk.  We did our best to distract him.  The surgery was done and we got home just in time to give Aaron his night meds and go to bed.

The next morning and ever since Aaron looks like he has scoliosis.  His left shoulder is raised up towards his chin and his right shoulder is hanging lower.  We brought this up to the doctor and of course they are not concerned.  This has been the last straw in a heartbreaking series of events over the past few weeks.  I dont even know where to begin to fix this problem. I thought the surgeon should have been consulted but that is not happening.

Aaron has diarrhea 5-7 times a day.  I have to wake up every couple of hours to change him.  We are both exhausted and not getting quality sleep.  Now that I am working again, I spend almost every day off at the hospital.   I am beyond sleep deprived and becoming very emotional.

Thankfully Michael is home for a few days.  I think this has helped lift Aaron and my spirits quite a bit.

Hoping and praying we can make some forward progress soon.  There has been way too many setbacks lately.


  1. Chandelle, I'm so sorry. I can hear your agony through this entry. If we can do anything at all please tell us. We want so badly to make things better for Aaron. We continue to pray for him. Xo

  2. Chandelle, My heart aches for all of you...please know our thoughts and prayers are always with you. If there is anything we can do to ease anything, please let me know.