Monday, August 13, 2012

Clarity Found... Or at least a direction decided

It has been 4 days since C's Birthday, 3 days since they scheduled his surgery and 2 days since our family birthday party for him.  I wanted to get past his birthday before I talked about where we are heading.

Boston is very confident that they will be able to repair C's mitral valve.  CHOP has agreed that a mitral valve repair is the logical course of action given his frequent respiratory infections and Failure to Thrive.

Scheduling called on Friday and asked when we would like to schedule surgery.  I was offered August 27th or September 26th.  I really wanted 2 weeks of isolation before surgery plus I thought we'd need more time to get everything together so I opted for September 26th.  We'll head to Boston over the preceding weekend, have pre-op on the 24th and surgery on the 26th.

I think I'm more stressed this time than last time.  Or at least, the numbing haze of exhaustion I was living within last time is no longer here to make everything fuzzy and remote.  Morbid thoughts ambush me fairly frequently and I find my fear hard to contain.

On a practical front I believe I've squared away transportation to Boston and lodging from the 22nd through the 27th.  I have started on a list of things to bring with me and stubbed out several more topics over on CHD Knowledge.  I am going to try to cope with this round of surgery by posting on the blogs rather than retail therapy or obsessive researching.  We'll see how that goes.

We've got a couple of little things to deal with in the very near future.  My current focuses are head phones and bandaids.

  1. C hates things on his head:  We're going to have to get him to where he can wear noise cancelling head phones or something.  He's going to be on a very loud plane.  We'll be working on that.
  2. C hates bandaids and stickers: These cause him to lose it entirely.  I suspect some bandaids will be in his future, so we will have to work to desensitize him.

Just over 6 weeks until surgery and 4 weeks until we stop going to preschool and become hermits.

The theme for this time period will be: Losing. My. Mind.


  1. I'm thinking of you.

    Do you have somewhere to stay in Boston? I can make some calls...

    1. Thank you for the offer :) We'll stay at one of the hospital houses. Ronald McDonald is mostly occupied with families who have children being treated with cancer. Our current reservation is through 9/27. They'll put us on the waiting list for after. There is also a Best Western that is a block away from the hospital. As soon as Charlie is in patient I'll be staying with him wherever he is. Chas is the one who will be living in a hotel. Mostly we'll want to keep really close to the hospital, so we'll hopefully be in the hospital housing most of the time. The hotels do have patient rates that we'll use if we need to fail over into them.