Here We Go Again

Nearly six months to the day of her hospitalization last fall, poor Scarlett ended up back in the hospital with another bout of rhabdomyolysis (rapid breakdown of the skeletal muscle tissue). We took her to the ER on the morning of Sunday the 18th as soon as we saw symptoms similar to last time. The good news is that we got there much more quickly, treatment got started right away, her "numbers" (measuring the muscle breakdown and kidney function) got to less than half of what they were back in September, and they never had to put a breathing tube in. It was still terrible, but a bit less terrible than last time. The bad news is that it happened again, indicating that it was not just a one-time fluke, but rather is the result of some underlying genetic condition. Scarlett's doctors here in Dallas are working with geneticists at Texas Children's Hospital in Houston (home of the largest pediatric genetics laboratory in the country) to try to get to the bottom of it. Scarlett was released from the Pediatric ICU at Medical City on Wednesday after a 10 day stay, was on the regular pediatric floor for two more days, and then moved today to Our Children's House at Baylor for in-patient therapy to get her muscle strength back up again. She's much stronger this time around, so we hope her stay at OCH is a relatively short one. There is no "magic pill" to treat her condition for now, but the key to preventing future episodes seems to be hydration.

Scarlett is in generally good spirits and is talking up a storm again. "Who are you?" and "What are you doing?" are asked of nearly every medical person who walks in the door. She often proclaims "I go night night now" and will close her eyes and pretend to sleep in an effort to get them to leave her alone. If she's feeling gracious, she might ask "you go bye bye now?" If she's feeling not-so-gracious, she'll simply announce "you go away now."

Just like last time, Scarlett's grandparents have have gone to heroic lengths to help us during Scarlett's hospitalization, including helping out with Max. (Scarlett's love for baby brother has not waned, and his visits up to the hospital have been highlights for Scarlett, who characteristically announces, "I want to hold him" pretty much as soon as she lays eyes on him.) Many other family members, friends, and colleagues have also gone above and beyond with their help and support. For that we are so grateful.

Scarlett has proven to us once again what a tough little girl she is. She's an awesome combination of feisty and sweet, and we can't wait to get her back home with us.