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Discharged after 1st Stage of LTP

We were discharged this afternoon, just in time to take home a happy bouquet and Dora balloon from our Sunday school teachers.

Honestly, it’s been really rough. Margaret isn’t doing as well as we’d like. She is choking on her saliva and aspirating everything she eats. Think the worst cold you ever had–unable to sleep or lie down without coughing. Think about salivating over your favorite foods and then everytime you open your mouth, what is in it goes down the wrong pipe!

After a chest X-ray that showed no aspiration pneumonia (yet), the hospital said there’s nothing they can do that we can’t do ourselves so we took Margaret home with an NG tube in her nose and a feeding pump so she can receive all her meds and nutrition that way.
She was on an NG tube for the first 1.5 years of her life. I struggled long and hard to get her to eat by mouth so it’s hard not to feel mad and sad about this setback. I’ve considered it my greatest accomplishment in life to teach her to eat (once I learned how truly difficult it was for a kid who wasn’t allowed to learn in the first 4 months when it is instinctual). Beware of tempting wanton gods with our pride!

Did we give her a wider airway but not a functional one? Only the future will ease the doubt that keeps us awake.

Time, practice, more practice, those are what is in the arsenal for our plan of care.

And so we step backwards and begin again.

David returns Saturday. James on Sunday. Margaret and I will be here next week for follow-ups. We won’t know till another scope on Wednesday how her airway is reacting to the grafts with the stent out and if we will need further dilation or to put the stent back in and stay in Cincinnati longer or return home.

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