My hair looks terrible!

The good:  Scarlett has been home for two weeks and is doing great.  The bad:  She had another episode of rhabdomyolysis (breakdown of the skeletal muscle tissue) and was in the hospital for 25 days.  The ugly:  While in the hospital, she announced that her hair -- which was a tangled mess -- "looks terrible" (although she said it with an East Texas twang that came out of nowhere and sounded more like "turrrrrible."  I countered with, "Don't you mean terrible, Scarlett?"  And she responded, "That's what I said, Mom.  Turrrrrible.").    

As background, Scarlett has a genetic condition that causes rhabdomyolysis that can be triggered by certain viruses.  Although the episodes are very scary and require quite a bit of recovery time afterward, Scarlett thankfully is otherwise healthy between episodes.  This was Scarlett's third episode: her first was in September/October 2011 (at 19 months) and her second was in March/April 2012 (at 2 years 2 months).  This episode (at 3 years 2 months) was set off by a dastardly stomach bug that methodically swept through our entire household.  Scarlett got sick with the stomach bug on Thursday March 28, and by the next day -- Good Friday, which for us didn't turn out to be so good this year -- she wasn't able to keep anything down.  Her condition can also be triggered by dehydration and fasting, so we took her to Medical City on Friday evening to get her checked out even though she wasn't showing any signs of having an episode.  Turns out she was beginning to have one, albeit a relatively minor one, so she was admitted to the regular pediatric floor.  Being in the hospital is never fun, but all things considered, the five nights she stayed were relatively uneventful (and nothing compared to a Pediatric ICU stay).  She was discharged on Wednesday, April 3rd, and had a normal evening at home, including dinner, a bath, and several hours of finely honed bedtime delay tactics.  

But the next morning, something wasn't right -- she was lethargic and didn't want to walk, symptoms that looked more like her previous "big" episodes, so back we went to Medical City.  Unfortunately, it was another "big" episode (although it remains a mystery why it happened right on the tail of her relatively minor stomach-bug-triggered episode).  She was admitted to the PICU and had to be intubated (a breathing tube was inserted into her trachea/windpipe) because she was having respiratory distress as well.   She remained intubated (and sedated, so that she would not fight the breathing tube) for one week.  The one other time she was intubated (during her first episode in the fall of 2011), the doctors had a difficult time removing the tube because the muscle damage weakened her body so much that she lacked the strength to breathe deeply on her own.  Because of this, we were very careful removing the tube this go-round, and sure enough, Scarlett struggled again this time as well.  After the tube was removed, she had an additional four to five difficult days involving breathing masks and treatments to help with her weakened breathing.  We finally moved out of the PICU and to a regular floor on Thursday, April 19th, where we stayed for four nights.    

Unlike the first two episodes, we came straight home from Medical City rather than doing in-patient rehab at Our Children's House at Baylor because Scarlett was stronger this time around.  Although she didn't walk at the hospital (the muscle breakdown, plus being confined to a bed for so long, seriously weakens her muscles), she walked the first day we came home a little bit and has been steadily regaining her strength ever since, something we knew would happen more quickly in the comfort of her own home.  She's also eating and drinking well, unlike the previous episodes when she was still on a feeding tube when it was time to leave Medical City.

In the last couple of weeks, we learned of a teenager in the San Antonio area who has Scarlett's condition (it's very rare, and we've only been able to identify a handful in the U.S.).  Chris spoke with the young woman's mother, and we were comforted to learn that both the frequency and severity of her episodes have decreased the older she gets.  We hope that the same will hold true for Scarlett.

It's been interesting to watch and hear Scarlett process her hospitalizations.  She plays doctor with her babies, and talks them through the various procedures that were done to her (the nurses gave us tiny equipment from the NICU for Scarlett to use on her babies, such as a breathing mask and blood pressure cuff).  She tells the babies that she understands they might not like being messed with, but that she is just trying to make them feel better.  When her babies go to the hospital, we go to "visit" them and Scarlett gives them pep talks.    

Once again, we were so moved by the thoughts, prayers, and support we received from family and friends.  Scarlett's grandparents dropped everything to help out, and we couldn't have gotten through the last few months without them.  As always, we are amazed by the courage and fighting spirit of our girl; she is one tough cookie.  (And you'll be glad to hear that the day we came home from the hospital I was able to slowly work the giant tangle out of her hair, so it no longer looks turrrrrible.  According to Scarlett, it is now long, blond, and beautiful, just like Rapunzel.)