Nathan had his fourth scope yesterday morning and it's taken me all day yesterday and today to begin to process what we learned. While we don't have his official biopsy results back yet, visually Nathan's esophagus looked very inflamed to Dr. Williams similar to what it looked like when Nathan was first diagnosed with EoE. We will know his exact biopsy eosinophil numbers next week. In the mean time Dr. Williams wants us to go back to the food Nathan was eating when he scoped clean last August. That leaves Nathan with 6 foods plus his EleCare; bananas, carrots, green beans, squash, pears, and raisins.
Nathan wants nothing to do with these six foods right now. Yesterday, I thought it was just because he had the scope done and didn't feel like eating. He's never been that way after a scope though. Today, he ate one small box of raisins, two green beans, and two bites of cooked carrots. The carrots even had caramelized brown sugar on them and still he had zero interest in them. He's asked for his favorites today, potatoes, fruit snacks, and his Enjoy Life cookies a couple of times, but agreed when we told him that Dr. Williams said that he thinks they could be hurting his tummy. Nathan just replies, "okay" and continues on with whatever he was doing. Bless him for being so agreeable right now. God certainly knows our heart strings can't take but so much tugging when it comes to him wanting food we can't feed him right now. We've been honest with him about this whole situation, but it's just a hard thing to try and explain to him in a way that he understands but we must be doing an okay job of it since he's not throwing too big of a fit when we tell him he can't have something.
We have a follow up appointment with Dr. Williams on December 17th, we will further discuss our plan for Nathan at that appointment. Right now Mark and I are thinking that we will try our best to get Nathan to eat these six foods and then re-scope in 6-8 weeks to be sure that they are in fact "safe" foods for him. After that, things will go one of two ways. If his scope is clear we will most likely begin trialling foods one at a time and scoping in between to make sure his esophagus is tolerating them. If the scope is bad, we will have to remove all foods and go completely elemental (meaning Nathan will get 100% of his nutrition from his formula EleCare for a while in order for his esophagus to heal before trialling any food.
For now all we can do is wait and pray that things get better from here. We know that God has a great plan for our sweet Nathan and that this is all just a tiny part of a much larger picture. We are thankful to be surrounded by such amazingly supportive family and friends. We'd be lost without you all.
It's so hard when they ask for food that we can't give them. My son had elevated numbers after a sweet potato trial and a few days after his scope he was asking for "taytoes" and it broke my heart to tell him "no". He is 100% elemental right now as he wasn't able to tolerate the three foods we've trialed so far, apples, rice, and sweet potatoes. The SP are still up in the air though, it might be his medication that he's reacting to and not the potatoes. We hope to trial SP again in a week or two. Good luck to you and your sweet boy.
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Love to you all.
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