Home 22q11.2 July 23rd, 2021

July 23rd, 2021

by Summerly Rowlands

Friday, 7/23

Reflux is a bitch.

I can tell it’s really bothering Izzy. She’s fussy and making gasping and choking noises which are pretty alarming. She’s trying to figure out how to breathe and it’s not easy.

On the plus side though…

The constipation medicine has gone down to one dose a day and she’s had two real poops, both a little thicker than the watery squirts we’ve been dealing with constantly.

The fungal cream on her face seems to be working. She is starting to look and feel so much better.

Her bottom is less red thanks to the special diaper cream… I’m gonna have to get the recipe from pharmacy.

The endocrinologist dropped her bloodwork down from every 6 hours to every 12 hours and there’s talk of taking even less since we’ve been seeing good, consistent numbers.

New on the care team today is the dietician. We’ve met with the hospitalist & GI. Now we are waiting to meet with speech so that they can observe a bottle feed and determine with the dietician if we can go up in volume. As of now, we are still on our 15 mL bottles every 4 hours and 20 mL every hour through the NJ tube. What we are hearing is that Izzy will have to literally grow out of her reflux, but her oxygen is remaining mostly stable, and that’s huge.

That’s what’s going to get us out of here.

And all three of us are in dire need of freedom.

We have been coined the “long term residents” and the rent is not cheap.

Current phase – walking zombie.


One of the residents just came in.

She informed us that Izzy’s DiGeorge results came back positive.

It was clear she had no idea what she was telling us.

She had no freaking clue the impact of what she just shared.

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