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What are we waiting for…

November 3, 2010


We are waiting for an add on time slot for the OR for today. Last night Dr R called from his car on the way home( I think because he was too afraid to tell me in person) to say that he could not get us an OR slot until Wednesday at 10:30 am.  He came in this morning and said that he knows the CRNP in the OR that does the scheduling and that he was going to go and see what if anything she could do for us today.  We know this game, it’s called “hurry up and wait".  We turned off Lucy’s J-tube feeds just so that we can be ready if in fact we get an OR time slot today…never lose hope!

Yesterday was a quiet day medically speaking.  We had visitors in the morning which made our day fly by.  People have been delivering meals to our home and to the hospital.  I can’t tell you enough how much that has helped us.  We have not gone down to the cafeteria to eat in a while, for two reasons.  One we are a little tired of cafeteria food, and two we are avoiding the cafeteria with Lucy because she can no longer eat her beloved Cheerios.  I am not ready to address that issue, so we are avoiding eating in front of Lucy at the moment.  I know when we get home, we will have to address the issue, and address it we will.

I had a unique opportunity yesterday afternoon to meet with a wonderful very energetic nurse who is a certified healing touch specialist.  She and I had a session where she “refocused my energy centers”, or at least that’s what she set out to accomplish.  What I do know, it was relaxing and calming, I even fell asleep during part of it.  It was a welcome feeling to all of the chaos we have going on in our lives.  I loved it and would do it again.

Today we are working on getting some of the training for Lucy’s new hardware.  Social work is arranging for the infusion company that works with our existing HHC to come to the hospital and show us how to use Lucy’s equipment  if not today, then tomorrow. It’s all forward progress, but I am thinking that I won’t tell my kids when we are coming home until the actual day of discharge.

Thank you all for your thoughts, prayers, care, and concern, it means the world to us!

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