We have been so busy that I haven't had time to write. Baseball, soccer, doctor appointments, school events and projects, and piano recitals have kept us overwhelmed with activities! June is a crazy month.
Matt had his ENT follow-up for his tonsillectomy and adenoidectomy (T&A) surgery. He still has very obvious signs of sleep apnea. Since our ENT did the scope at the time of his T&A and found the laryngomalacia, we know that the obstruction is not going to go away without help.
Matt received a once-over and he is not hyperflexible like Nolan is, so he probably does not have Ehlers Danlos Syndrome. His reflux, laryngomalacia, and constipation issues are likely coincidental. This is good news, as he should heal well and not have a recurrence of the laryngomalacia once surgery is complete. He will remain on anti-reflux medication indefinitely.
Matt's supraglottoplasty has been scheduled for June 25. They will laser out the floppy arytenoid folds so that he can breathe freely at night (if you have no idea what a supraglottoplasty or laryngomalacia are, then read more about it here and here).
Fortunately, my mom is flying out to care for Nolan while we are in the hospital with Matt. We need someone who can take care of his g-tube and give him Zofran (if needed) while we aren't at home. I am grateful for the help, as our only other option is to have one parent at the hospital and one at home with Nolan.
Nolan also has new earmolds, but I'll share those in another post.
3 comments:
I'm sure you've considered dietary issues but just to throw it back in there, Lauren's reflux cleared up when her digestive issues (no more dairy, soy and fructose) and constipation (small daily dose of a mild P.E.G. laxative) issues were resolved. I figure we solved things further down the line so the upper portion of her GI was able to function better.
Just a thought?
We haven't ruled out dietary issues for Matt - there is actually a suspicious of eosinophilic esophagitis and food allergy issues. We go back to the GI in August once we get the laryngomalacia sorted, and will run some blood work for allergies. We've tested for Celiac Disease, but we haven't done any allergy testing. He has been taken off dairy to see if that helps (both of my boys don't react well to dairy). Matt takes a high dose of Miralax (PEG) daily, along with Lactulose and a stimulant laxative as needed (we try to avoid the stimulant laxative).
You sure are busy! Glad the surgery is scheduled sooner than later. Less time to anticipate it - just get it done. And hurray for Grandma coming to be with Nolan.
Good news that doesn't seem to have EDS :D
Praying all goes well,
Julie
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