Saturday, December 7, 2013

Reporting from the front lines

Well I've been here 24 hours and all I can say is... I don't even know how to put it into words. This gig is nonstop. Laura wasn't kidding when she said there is hardly 2 hours between anything. It's a marathon.

Simon is right on schedule with the vicious pushback.  They said the end of week one is where the rubber meets the road and kids start to "show resistance". They weren't kidding.

Like Laura comes out of a session covered in food or there are fork scratch marks on the wall or I can hear him growling like a wild beast all the way in the hallway where I wait for them.   It basically looks like Simon is saying " Are you f-ING kidding me?  I've been a good trained monkey for a whole week. You want me to keep this crap up? Bite me!"  And then he has a last snack where he takes in twice the volume asked of him. Classic Simon.

 It doesn't help that she's on her own on the weekends in terms of doing feeding sessions. 3 of the 6 meals a day are done with a therapist during the week. Weekends are all her. It's...kind of intense.

The hospital is beautiful and sparkling clean and everyone is super friendly. And it's still a hospital. There are little babies being wheeled by hooked up to oxygen and kids cruising with IV poles and security guards who very gently ask me not to nap on couches in the cardiac waiting room because they can't tell in security cameras if I'm asleep or or had a heart attack. Seriously.

My dear friend Christopher brought food by and stayed for a short visit between meals. Will try another similarly timed visit tomorrow with a mom and her daughter about Simon's age who also has cardiomyopathy (know them from our Listserv).  I think no visits during the week though. Too intense.

Tomorrow night I get on a plane and leave Laura to do this mishegas on her own for another week. Then I get in the ring.

She's a freaking rockstar you guys. It's a lot like when she was in labor. It was really hard and really intense but it was finite and I knew she had it in her. She has the same look in her eye. I'm not worried.  When she comes out of a feeding session and says "god that sucked. This is really hard" I just say " yep. I'm sure it did. Tell me all about it". Like she just made it through a wicked contraction. There is a point to this stress and exhaustion and extra laundry. We might actually get this kid off the tube. For good. It's possible that that last batch of blended food Laura made over a week ago was our last. Not guaranteed but totally possible. That's kind of like a baby in my book!

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