Dancing Through the Chaos

Trying on Mommy's shoes and cooking in the play kitchen at the bright and cheery hospital playroom.  She was so proud that she'd managed to wiggle her feet into them and walk a couple of steps in them all by herself. The nurse also did her hair this morning, isn't it so cute!

I'm so thankful for the physical ability to eat. Soon I hope I won't have to hide in another room from my child so she isn't upset by the sight and smell of food she can't have.

Otherwise, Audrey continues to do very well; she smiles and laughs to charm all the staff here in the hospital, and she is being allowed to have formula through the G tube again!  She still has the capped IV in her foot unfortunately, which puts a cramp on her style, and today she needed regular Tylenol because I think the stent in her esophagus is beginning to hurt for some reason.  But it has stayed in the right place and her temperature remains healthy.  (Many heartfelt thanks to Dawna for sending me more details on warning signs for an eroding esophagus during stent therapy.) Dr Manfredi said on Wednesday that he is thinking of possibly keeping the stent in all the way through next Friday.  My heart sank a bit at that.  He also said that it might be necessary for her to have another resection surgery down the road, if her esophagus does not stop restricturing.  As in, a thoracotomy (open chest surgery) like the one we had in August.  He does not think her stricture is caused by reflux nor that it would be helped by a fundoplication (stomach wrap), but he thinks rather it is caused by issues with blood supply to the area of the esophagus, a result of unhealthy tissue that could still be under tension from a tight repair or old scar tissue.  Pardon me while I pick up my own stomach off the basement floor. 

But, back to today.

She had a great time in the hospital playroom!  She's free of the IV pole and can toddle around as best she can with a big diaper wrapped around the IV on her foot.  They didn't want to take it out because she is such a "tough stick" and they may yet be able to use it again for surgery I guess.  (Her IVs take a lot of tries to place, it's really sad.  Once they've used one site they can't use it again because of scarring in the vein.  The one good thing is that all of her recent ones have been placed while she's under anesthesia. But she's had them now in her scalp, in her thumb, her big toe... they're needing to get creative and unfortunately it's only going to get worse. Not to be sad or gross.)

I want to take my baby home so bad, and rejoin my other sweet children there.  I keep needing to reign in my impatient heart as it beats hard with frustration, and try to ask instead, Lord, you know what you're doing, here am I, use me in this place.

Still, I wish I could get out some of my frustration in a good rigorous dance class.  Not long ago, I used to dance. Modern dance--kind of like barefoot ballet--is my passion.  I hope I can return to it some day, but for now I will go on dancing through the chaos with my precious family, and we will continue to search out the blessings in every situation.