Not a very merry Christmas :(

Well, I got home on Tuesday for the holidays.  The trip wasn’t too bad, except that I had to wake up at 5am to get to the airport for my flight.  In a perplexing reversal, I actually felt really depressed when I got here.  I attribute it to both exhaustion and the defense mechanism my mind seems to have created to make leaving here hurt less–if I never get happy and spend the whole time thinking about how sad I’m going to be that I’m leaving, it hurts less.  Messed up, I know, but I mostly got over that after a good night’s sleep.

All of my problems and feelings took a back seat, however, when we heard that baby cousin Savannah was in the hospital….again.  She was born on October 8, and has been in and out of the hospital for most of her life because of digestive problems.  Not too unusual, especially since she was a premie.  But now the doctors say that she likely has a very rare genetic metabolic disorder called OTC.  Basically, she was born without the enzyme which breaks down protein.  This is why she couldn’t keep food down and didn’t gain any weight.  This morning she got moved to the Pediatric ICU because of the ammonia levels in her blood due to the disease.  If the levels get high enough, she could go into a coma, or worse.  Luckily the levels have gone down, but she’s still in the PICU, and we’re not out of the woods yet.

We still had Christmas eve with that side of the family, because it was baby Riley’s first one (she’s about 11 months old), and the parents of Savannah said they wanted to make sure Riley got the most out of it.  Still, it was a somber affair, and I know the weight will never truly be off all of us until Savannah’s out of the PICU with a specially designed diet and amino supplements to let her function and grow like a completely normal child.

What makes this even worse is that her parents are literally the nicest people ever.  They’re both teachers, and both wanted to have a large family, but now I doubt they’ll have another child, for fear of their genes mixing in just the wrong way again.  I guess if there’s any silver lining, it’s that this disease was caught early enough that Savannah has a fairly good chance of surviving and going on to lead a normal life.  Fingers crossed.

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2 Responses to “Not a very merry Christmas :(”

  1. kive87 Says:

    Oh man, I hope she gets better 😦

    • AD Says:

      The medicine’s already working better today than it did yesterday, so that’s def good news. It was just a bit of a tense few days. She’s so adorable though, I can’t wait to see her when she’s not connected to a thousand different wires and tubes.


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