Day 45

Hard day! They increaed Michael's feeds by 5's and he couldn't tolerate it. He became incredibly agitated.
I am exhausted and spent the day on high alert wrestling with him to keep him safe and/or comfortable. I lost my patience while attempting to do his wound dressing change. It was impossible for me to do without two extra nurses, the music therapist attempting to keep him calm and a dose of atavin. How I will do this at home by myself is a daunting thought. One that brought me tears today and I van usually keep it together. More than likely this was this casebecause during rounds this morning Dr's talked about sending him home tomorrow. They are assuming that he will be at their self-proclaimed goal of 60 ml each hour by Friday. This would mean that he would be hooked up to a pump every hour of the day. A pump that has long tubing that is then connected to his gtube in his stomach. 60ml would constitute Michael being 'hydrated' as the dr's explained. It would not however be 'ideal for nutrition nor weight gain' as well as a normal life schedule outside of
the hospital.

I talked to Noah on the phone tonight and he reminded me that I was suppose to call him after school re: his graduation program tomorrow and I hadn't. (My phone was not working and I needed to goto the apple store.). He let me know his 6th Grade Graduation is tomorrow at 9:30am. My heart sunk as I realized how terribly difficult itwouldbe for me to be there. He said "please come!" and it was decided. It took all I had to mask the sob escaping my throat as I assured him I would be there.
This has affected our family.