Aaron's Hyper IgM Journey

Wednesday, July 25, 2012

Our bags are packed but not going home

We were packed, boxes shipped and ready to go home. Yesterday, we got the news that we are not being released after all. Aaron's white blood cells and neutraphils have been plummeting for several weeks. The doctor told us two weeks ago that he will treat it intermittently with a stimulating drug as needed until the new immune system gets stronger and works itself out. Yesterday, out of nowhere the doctor changes his mind and wants to do more lab values to come up with a schedule for the stimulating drug. This way we do not have to go in to the hospital every other day and check on the labs. This is a really great idea. However, it could have been done weeks ago. Hmmm... We have been so patient, but this last ordeal has made me want to scream.

Things have been a little tough lately. Two amazing Moms lost their beautiful daughters last week. Today, I was walking into my room and my neighbor has her daughter in a wheelchair. The Mom is on the phone trying to call for help as the daughter is throwing up blood over and over. All I can think is I have to get away quick because this could put Aaron at a HUGE risk of all kinds of issues. I felt like a jerk not helping this poor Mom. I did call the front desk and got a manager up to her right away.

We also got a notice in our box that Whooping Cough is on all time high levels for children at the hospital. This is super contagious and I have definitely heard several kids coughing at RMH lately. We don't feel like we are providing Aaron with a safe environment right now. We need to take him home.

I had to go buy Aaron some toys and puzzles. Poor kid. Everything was packed up and shipped home. We have been talking to him a lot about going home and I am surprised how much he remembers. He remembers his toy train table (of course) and his slide with the red tunnel and planes in his room.

The doctor said we can leave Friday, but with our schedules, we won't be able to leave here until next Wednesday. Fingers crossed.

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1 comment:

  1. I am always praying for you all.
    Love Grandma Cindy