Better Late Than Never

I went to the hospital this morning to visit my sister-in-law so I came in late to work. My brother came into Boston for an overnight stay with her in the hospital (my parents drove out to western Massachusetts to care for their kids) so I was able to see him for the first time in a few months.

I don’t know how they do it. It must be so exhausting. When I got there, a doctor (surgeon?) was in there consulting with them. I stayed in the corridor until the doctor left. Apparently, he was giving them their options – both of which sucked. For some reason, he was encouraging them to chose a route that would leave Heidi without her feeding tube for a month and THEN have surgery. The other option (which was the original option) was to have surgery this Friday.

To the three of us it seemed like a no-brainer: she’s in horrible discomfort so let’s get her treated as soon as possible so she can be released as soon as possible.

We’ll see what happens. Oh, and I got some additional bad news while there. In the past, I knew that it was suspected that my nephew had symptoms of mitochondrial disease but it was not confirmed that he actually had it (you may recall that my niece died from it in September). Well, he officially does have it now.

At 9 years old he’s getting a stroller. Yep, a stroller. This is because he’s too weak to walk long distances. He’s OK for short-term/local activity, but anything longer than that and he practically collapses. This is on top of his gastro-intestinal issues requiring lactose and gluten-free diets, and the neurological issues of Aspergers (spelling?) and Tourette’s.

Knock on wood, my niece remains 100% healthy and active.
Damn – today’s posting was a downer.

6 Comments

  1. Comment by JC on May 3, 2006 11:08 am

    Oh man, Karl. I don’t know what anyone could have done to deserve such punishment. If you need anything, give me a call…you know I’ll do what I can. Good luck to you and your family!

  2. Comment by Will on May 3, 2006 11:18 am

    This is like the afflictions of Job. Obviously it’s painful for you, but how’s your brother taking it? It must be unbearable for him.

  3. Comment by Rob on May 3, 2006 12:34 pm

    Such terrible news about your nephew! Hang in there little buddy!

    I hope your sister-in-law comes out well from the surgery. Good wishes from me to you and your family. Peace.

  4. Comment by karyn on May 4, 2006 10:58 am

    I feel horrible for Paul; this has GOT to be eating him alive. Poor guy. And kudos to your parents for stepping up to the plate to go take care of their kids – and kudos to you for being supportive and loving.

    Don’t know why these things happen… it does seem monumentally unfair…

    On the upside, you did spell Asperger’s correctly…

  5. Comment by Erica on May 4, 2006 5:03 pm

    All the things your brother and his family go through always leave me not knowing what I could possibly say. It can’t remotely be fair or right that the world just keeps dumping on them. It truly does put all my problems into perspective.

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