LIVING

With EoE, Allergies, Asthma and a G-Tube

Beef Pass

Charlie and I took a trip to the GI doctor for a scope and got to spend about 12 together. We had a good time. He talked my ear off about things like the planets, how to create a magnet that would push away eosinphils so kids with eoe could eat again and how he plans to be in the military one day. It was my birthday so he and I got to actually go out to eat at a restaurant just the 2 of us. It’s amazing to watch someone at a restaurant for what they remember as one of the first times. The menu was super overwhelming for him but he insisted on navigating through it alone. I let him. He finally closed the menu and said I’ll have a pancake. Puzzled, I asked him why just a pancake. He said well I would really like the quarter pound bacon burger. I smiled and told him to go for it. He said but it’s $9. I assured him it would be fine this time. 20151221_185545.jpgHe gave it his all but wasn’t able to finish. My heart was full just watching him eat it.

The next morning we arrived at the hospital bright and early as usual. This day Charlie refused the loopy medicine they give them before hand. He was going to try and stay awake through the whole procedure this time. He makes me laugh. 20151222_090555.jpgNeedless to say he failed his mission of the day.

When the doctor came out to talk about Charlie’s scope he sat down beside me and touched my arm. I instantly had an uneasy feeling. I also wanted to tell him if he had bad news to just give it to me, I can handle it. He told me there was no sign of EoE. Then he showed me Charlie’s esophagus pictures. 20151222_193752.jpgMy heart sank. Something is definitely wrong. What is all of that? The Doctor wasn’t sure. Fast forward to today I got a call from our GI. As the GI who preformed the scope had said there was no sign of EoE and Charlie’s counts were the same as they were back in May, 1-2, meaning beef is a pass. HURRAH! Now, onto that mess. They don’t know what it is. They checked for Barrett’s esophagus. That came back negative. For it to be Barrett’s he would have to have stomach tissue in his esophagus. Charlie just has esophageal tissue. Barrett’s esophagus typically occurs in people in their 50’s and 60’s that have untreated reflux. Charlie is on a high dose of reflux meds and has been for quite some time. The doctor wasn’t sure if they’re watching Barrett’s esophagus develop or what’s going on. They had never actually watched it develop in someone. We don’t want it to be Barrett’s though. Barrett’s can lead to cancer. Our plan is to let Charlie trial another food, either shrimp or eggs. He is currently eating eggs baked in things but not scrambled. He is scheduled for a scope at the end of March. We also upped his reflux meds. Even though he is on a high dose, upping it can’t hurt. Switching to another medication won’t make a difference. If he is developing Barrett’s it can be painful, we want to minimize that.

Could all of that stuff go away by his next scope? Yes. In that case we may never know what it is/was. So now we wait. I am to listen to Charlie for complaints of more chest pain, reflux symptoms, etc. He has no clue any of this is going on inside of him. Since we have no answers we don’t want him to worry or imagine symptoms he doesn’t really have. The doctor told me to put it in the back of my mind and not to worry about it. Yeah, right. We’ll see what’s going on and hopefully have some sort of better answer after his scope in March. If it’s still the same in March with the same biopsy results then we’ll check him every 3-6 months after to keep a close eye on it.

When I told Charlie today that he passed beef Gage was in the room. Gage started crying. He’s having a rough time still wanting all food. I think my plan of teaching them to be happy for one another was a good one, but in our reality can’t really happen. Gage wasn’t mad Charlie passed, he was just hurt it’s not him passing foods.

Say a little prayer for both boys please. 1 016

 

December 28, 2015 Posted by | Charlie's allergies, Gage's allergies | , , , | Leave a comment

   

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