Aaron's Hyper IgM Journey

Monday, July 9, 2012

6 months, 7 months... who's counting

Aaron dressed like a construction worker

It has been 6 months since Aaron's transplant and we have been in Ohio over 7 months now. Our transplant team is making preparations for us to come home. They have to find a doctor to oversee Aaron locally and set up home health care. Aaron's doctor in Cincinnati will still call the shots on Aaron's care until Aaron is probably 30 years old. We will be heading back for follow ups frequently.

Aaron is still doing ok. His personality and energy are better than ever. He is a happy boy who is obsessed with trains. He tells me things like "Mommy diesel electric locomotives don't have coal bunkers because they are not steam engines." He asks all kinds of questions I cannot answer. I just bought him a book for adults that explains about how all types of trains operate so that I can answer his questions. He will love it.

Aaron's liver numbers are up and down but so close to normal that I do not worry. His kidney numbers are up and down but on the road to recovery in the distant future. He will never regain his original kidney function. However, his kidneys should achieve a near normal level without any long term complications.

Our latest concern is his neutrophil and WBC counts are bottoming out. He was nearly hospitalized last week for this. They gave him gcsf which helped his numbers increase artificially but will not solve the underlying problem. The doctors are unsure why this is happening and we will undergo yet another round of watch and wait.

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