An Unwelcome Surprise

After a sweet spring break filled with family, friends and spiritual uplift, I'm unexpectedly sitting at the hospital with Audrey on this beautiful rainy Monday. She hasn't been able to swallow solid food since Thursday, and we suspect the culprit is a handful of grapes she conned out of her big brother. I think the grapes got stuck just above her stricture, and the esophagram we just completed seems to agree. Certain foods are famously challenging for EA kids, but with all the progress she's made I guess we got a little over confident. Even though we are traveling to Boston this week for a dilation, her doctors felt it was important for this to get cleared out before we travel. She was a total champ for the test, best ever for her, where she had to lay down under a machine and drink barium while they took x rays to see what was happening inside her throat. The debris was obvious and unfortunately the stricture looks like it has worsened significantly in the past two weeks. Crazy questions, wondering what is going on inside her cells and why. She's heading into the operating room now where they'll just remove the debris and get a better look, we should be fine to go home tonight and travel as planned on Thursday to Boston for Friday's dilation.

A little elaboration on why the esophagram test was best ever for her: She is normally very scared and instead she cooperated beautifully! She was too nervous to open her mouth to drink the barium, but she grudgingly let me put a little in her mouth with a syringe, and it was enough. Even though she's normally pretty chill in the hospital, there was a definite improvement in her stress level for this particular test. I was amazed how relatively relaxed she was on the table, letting them position her as needed and staying in that uncomfortable spot until they were done. I love that she seems to be responding well to verbal explanations prior to her procedures now, it's a big help.

Awwwwwww! :-) Still asleep in the recovery room.

4pm:
The debris is out, but I'm sorry to report that Audrey's throat has inexplicably strictured from 15mm to 3mm in just two weeks. We are fine, though our minds are filled with questions.

She has still always been using the feeding tube for her primary nutrition every night.  As several friends have suggested, smoothies are a fabulous idea for when we start to replace the full nutrition of the formula with oral food.  We are so close but just not quite there yet.

Her food by mouth is not yet "counted" toward her overall nutrition.  Food is just fun for her, but she loves it. It's why I brought her in today really... She was upset from wanting food and we thought we could help by clearing the grapes out of her throat, so she could snack again. But the doctor is now saying no solid food until after her dilation, so bummer. Might just have to let her have all the ice cream she wants.

The friend whose baby shower was where the grapes originated felt bad for Audrey, but I told her truthfully, she was probably already having problems in there before the grapes got stuck, and if it hadn't been those it would have been something else! She's been stealing whole apples off the table and taking huge bites of them, she acts like she is starving and begs for real "big people" food, it's part of the very independent attitude she has right now.  One friend theorized that this sudden stricturing might have something to do with a growth spurt, and I think she might be on to something there.  Other families with EA kids have had similar sudden setbacks throughout toddlerhood, that finally tapered.  I wonder, could growth hormones be sending a message to that scar tissue as well, to "be fruitful and multiply" like the dickens?

At any rate, the plan is that she and I will travel to Boston this Thursday, her dilation is Friday, we rest Saturday and hopefully return Sunday.