Today I am returning to Children's Hospital with Handsome for more testing. He turns three at the end of this month and still deals with increasingly worse reflux and, at our last visit to the hospital, was diagnosed with oral pharyngeal dysphagia. Basically every time he swallows liquid, he aspirates part of it into his lungs...and, given that he has reflux, he also is aspirating stomach acid into his lungs. Needless to say, this is not good!
It is especially bad because he's pretty much at the end of the window of opportunity for outgrowing these things--and dysphagia (he has two types) in a child his age is quite worrying. I'm not sure what is in his future, but I'm worried. Currently all we're doing is thickening all his liquids (which he seems to appreciate--not the reaction I was expecting from him!) and giving him inhaled steroids to strengthen his lungs. Future options include occupational therapy for his mouth, brain scans, and some very very invasive tests. We'll know more after his repeat fluroscopy and appointment with his pulmonologists.
We go back to Children's again on Friday to meet with our GI specialist and talk more about our options for addressing his reflux--which is worsening again. He's now on 30mg of Prevacid in the morning, 4 ml of Zantac and 15mg of Prevacid at night. Even at these increased dosages, he wakes up all night long and his sheets are covered with stomach acid in the morning. Poor little guy. He does a bit better with it during the day, but it still bothers him--and he is soooo tired from his poor sleeping.
Edit: On a different note, today my make-your-own puzzle post is being featured on No Time for Flashcards!
I will be praying for that sweet one. I can say I know personally what it is like to see your children in pain, and not at their best. I will pray that they come up with a solution soon. You are in my prayers also, because I know it wears on a Mama. Have a blessed day. Jackie
ReplyDeleteYou will be in my thoughts and prayers! i found your blog through no time for flashcards! great blog!!!
ReplyDeleteI will definitely be praying for your little boy and your family! Let us know how it goes.
ReplyDeleteYour poor little guy! I had no idea it could be that bad in a non-infant. I remember how bad my daughter had acid reflux, but she outgrew it, as most infants do. I am so sorry! Keep us posted on how things go.
ReplyDeleteCarrie
Oh no. Of course I will be saying prayers for your little man.
ReplyDeleteMy daughter had it as an infant and was on the meds you mentioned, but outgrew it. Gosh darn these medial things. I wish I could take it away for him. Give him extra hugs and cuddles and high fives from me....Les
I will keep your adorable little boy in my thoughts and prayers!! If you need anything from a blogging friend please just let me know!!!
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