I Have Marfan Syndrome

The first week went pretty well.  I was able to get help for just about every day in the afternoon.

This week has been different.  I haven't been able to secure anything definite for any day.  Luckily, though, on Monday we were walking to the post office and on the way back we stopped at one of S.'s friend's house, and they offered to take S to the "beach" (a lake).  So she was out all day Monday.

Today is Wednesday, the third day that I am taking care of my kids on my own.

My mother in law went back to Virginia last Tuesday, and my mother went back to Ecuador last Friday.

I got a copy of the surgical report from my surgeon on Monday.  I thought it was interesting, so I'm gonna post it here.

"PROCEDURE:

"The patient was brought into operating room and placed on the table in supine position.  Generral endotracheal anesthesia induced without difficulty.  Right radial arterial line, retro jugular, Swan-Ganz and Foley catheter were placed without complication.  The patient was prepped and draped in the usual sterile fashion with Betadine solution.  Prophylactic antibiotics were administered.

I would really have preferred to have this happen before having kids.  Unfortunately, we don't really get to plan these things do we?

First - I don't like that my daughter has to see me like this, and that she has to be told that daddy can't do certain things with her.  She's 4,  so she's going to remember this.  Fortunately, my mother-in-law and my mother are here, so they take some of the burden of entertaining my daughter and playing with her off of my hands.  But there's still the grey area - I'm not dead, and I can talk, and walk around, so when do I have to say no, and when do they have to keep her away from me.

It's been a week now that I've been home from the hospital.

I am finally able to sleep in my own bed, and sleep pretty much through the night, waking a couple of times to go to the bathroom.