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Post Tonsillectomy Swallow Study Results

Post Tonsillectomy Swallow Study Results

I am thankful that a picture is worth a thousand words. It means I do not need to write much; the photo above says it all. A nurse and I held Nathaniel down so a doctor could put a camera up his nose and down his throat while a speech therapist force fed him three eyedroppers of green dyed apple juice. He coughed green dyed secretions out of his trach tube for an hour afterwards.

He is still aspirating.

There have been some changes. The doctor was able to visualize Nathaniel's swallow during the FEES test today. This is an improvement over the attempt at the same test in September before the tonsillectomy. The surgery did open up some room and today's test gave the team - an ENT and two speech therapists who specialize in feeding - some information.

I learned a lot about swallowing today. I am thankful for the thirty minutes the team spent after the test explaining normal and Nathaniel to me. Especially since most of the time I was teetering precariously between fighting back the tears a momma needs to cry when bad news comes and being a bulldog of an advocate for my child. There is an ENT going home in Cincinnati tonight who deserves a pat on the back for simply being fully present in the moment and remaining human while giving hard news.

There is much I could explain. For now I will sum up today's findings with the implication they likely have on the future - if Nathaniel's laryngenal web and subglottic stenosis are removed in a reconstruction surgery to provide a more stable airway, Nathaniel's lung health will be jeopardized. To what extent his lungs would be endangered is unknown. I was encouraged to think long term as we make decisions. There was much concern expressed that lungs are not designed to endure decades of aspirating.

The test also showed a lot of inflammation remains in Nathaniel's upper airways. The twelve week drug trial we have been doing since our August visit has not been as successful as hoped.

I took another picture hours after the first that speaks a different thousand words. Complexity and simplicity come wrapped so tightly together today that they create a continual lump in my own throat. I am thankful that God can handle all my thousands of words. The ones that declare my disappointment and the ones that profess thankful praise for painted mushrooms, seasonal trees, a joyful little boy, and an ever present God.

What We Need When the News is Hard

What We Need When the News is Hard

Want to High Five About My Progress?

Want to High Five About My Progress?

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