Aaron's Hyper IgM Journey

Wednesday, August 15, 2012

The Plan

Cincinnati is finally corresponding with the doctor in Orlando and they are agreeing with all my decisions.  We did go to the eye doctor and they did not know what is going on with Aaron's eye.

I have taken on the role of Aaron's doctor.  I decide when he gets labs, what time of day, which labs to take, when he gets his infusions, how to treat his complications, and everything else.  I even diagnosed his eye problem.  I believe it is atopic dermitis.  This is not a life threatening issue and can be treated, but may not go away for awhile.  Aaron will see a dermatologist next Wednesday and we will see how well I am doing with my diagnosis and treatment.  It is sad that I have to take over with all his care, but my mother would be proud.

Because of Aaron's diarrhea, he is likely not absorbing enough of the cyclosporin (his most important med) to reach therapeutic levels.  Therefore, we increased that dose.  He also got a booster of steroid today.  The steroid will help with the diarrhea and itching.  These are signs of GVH and the steroid may alleviate that (hopefully).  On the down side, we expect Aaron to be raging for the next few days. 

I have gone back to work.  My days as a stay at home Mom are over.  I hate to admit it, but I am very happy to go back to work.  Today I worked in a cubicle; I put on headphones and jammed to some great music while working for 6 hours.  This was a great break!!!!  I am only working 30 hours a week.  Working allows me a much needed mental break and then I am a much better Mom when I am home.

I apologize to anyone that is worried about us after I said I was being taken to collections.  I need to clarify.  I am upset because this was Arnold Palmer Hospital's fault.  They processed the bill incorrectly and told me not to pay until it was reprocessed.  I never heard anything from them again until I got the collections letter.  We do have money in the fund to pay for this and I am working again.  I spend so many hours of my life in the hospital with Aaron, taking care of Aaron, and dealing with bills, insurance companies, hospitals, home health care companies.  I stay on top of everything to avoid situations like this.  That is why I got mad.  Please do not worry that we do not have money to pay our bills.  We will be fine.  We always find a way.  But thank you all who have been concerned for us.


  1. Chandelle - sorry I have not had time to call you back. Sounds like things are back on track. Thank god you have a medical background and understand all that - I would be at a loss. I am sorry that you are having to do so much but it is good you know what you do. We are thinking of you and kate sends her best as well. wwe caught up on the blog while she was visiting. Hugs and Kisses.

  2. Glad things are a little better for you now. Where are you working now? I miss seeing you at Publix, but I understand how important it is to shelter yourself from the germs too! Take care and keep me updated.