Aaron's Hyper IgM Journey

Sunday, February 9, 2014

A bump in the road

Aaron has been stable for a long time. He has had slight ups and downs with his steroids and his gvhd flares, but no major hang ups. Until now.

Two weeks ago he stopped eating and drinking almost completely. He became more and more tired and wanted to rest most of the day.

We arrived in Cincinnati Wednesday for his monthly treatment only to learn that his electrolytes have plummeted. The doctors allow quite a bit of deviation from normal levels, but Aaron's became critical. They admitted him for a night since he would be hooked up to IVs all night and sent us back to RMH. Friday morning we returned to Day Hospital to find Aaron still is not holding his electrolytes. He also developed a nasty finger infection.

He is much better with eating drinking and energy. But... They gave him so much fluid his belly button is popping out. He is huge and having a hard time breathing. They gave him too much potassium and had to do an EKG to monitor his heart.

We are now waiting for Aaron's electrolytes to sort themselves out. He will go home on IV fluids for ten hours each night (even less sleep for me since he will pee even more all night). I am lucky to get four hours in a row of sleep, now it will be two. Ugh.

We just got word (while I am writing this post) that Aaron's finger has grown back as a pseuodomonas infection. They are changing antibiotics. Not sure yet how this will change things.

We plan to be discharged tomorrow to RMH and drive home Thursday. We are bummed that Aaron will miss out on his home school teacher who is awesome. I will also miss a lot of work.

With all that said, our spirits are good. We are the luckiest BMT family to have Dr Davies as our protective guardian. No one in this hospital is allowed to make a decision without her. Late last night a doctor wanted to give Aaron IV Lasix. I knew this was wrong. I sent Dr Davies a text message. She called the unit immediately and let then know again that NOTHING happens to Aaron without her approval. Did I mention she is the head of the entire BMT department!!!

Aaron has enjoyed sitting in bed a little too much. He requested we get him some cooking magazines. Here is a picture of him perusing.

We made him walk down the hall. He was not happy about that. However, he enjoyed watching his friend Joshua have a sword fight with his nurse. Aaron wanted to show Joshua his puppy dog. I see a lifelong friendship in the making.

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Location:A bump in the road

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