10/22/15

Follow-Up

As a follow-up to yesterday's post, I did go for a run, 1.3 miles. But when I got home, I didn't get to sit and watch TV. I finally had a quiet moment to e-mail Eloise's surgeons, which I thought is worth archiving here, so some future Eloise knows how much I've loved her from the beginning.

"Hello, Doctors! I hope you are well. Eloise has been doing really well lately. I have been working very hard with her the past 19 months to overcome her oral aversion, and she has been a quick learner. Her occupational therapist and I both have come to the same conclusion - the thing holding her back from eating orally completely is the floppy pouch in her esophagus. She gets food stuck in it, and doesn't know enough to keep flushing it with water. She also gets build up of secretions in her pouch, like you saw in her scope photos a few months ago. After she wakes up from a nap or in the morning, and whenever I am feeding her via her G-tube, she wretches on build-up in her pouch. She usually coughs up approximately 1/4 cup of thick, viscous spit.

I have been thinking of ways to possibly make this better for her, and want your advice on three ideas:

1. Can we loosen her spit medicinally? Can I give her anything that could make her spit less thick, and thus easier to swallow or cough out? I give her plenty of water throughout the day, so she's not dehydrated. Its just thick. 

2. Is this something she will grow out of? As she grows, will her esophageal pouch lengthen? Do you think I should just plan on feeding her via G-Tube until that pouch has gotten easier for her to handle?

3. I doubt anyone has any interest in even discussing a surgical solution, but I also don't know how unique her case is. Is her pouch enough of a problem to consider surgical solutions?

Recently, after a nap, Eloise was doing her routine wrenching and amidst her spit was a small, plastic googly-eye. We had used those with play dough the day before. At the least that googly-eye had been in her pouch for 4 hours, at most an entire day. I just don't know if this is the kind of problem that we have to wait out and let her naturally grow out of, or if there are solutions I have not considered that perhaps you both have more experience with. 
I appreciate your time so much, thank you from my heart!
Best,
Shelley"

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