Big Huge Chris Update

Big Chris Update

Apologies

I need to apologize for not writing this sooner. I admit the surgery was kind of an emotional tipping point for me. Kasey came home, and it was a great visit. He surprised us by bringing his truck to the house and honking. The boys all went running outside when they heard the air breaks hiss and the horn. They’re all huge Daddy’s boys, so when Daddy is home we spend as much time with him as possible.

Surgery

Chris had his right ear tympanoplasty, left ear clean out, and upper and lower endoscopy done during this surgery. We decided to combine them in order to reduce the number of times he will be put under general anesthesia. When Chris had his first surgery done, he was very angry and didn’t want to go through it. This time was even worse, emotionally, because he knew what to expect, and he knew what recovery was going to be like. What made it even worse is that instead of being angry, he was sad. He was crying, saying he didn’t want to go through this anymore, and he is so tired of people messing with him. This was heartbreaking for us because he is normally very stoic. What made it even worse is that there was a delay in getting him in, so we were there for a few hours past the time where he was supposed to be taken back. Then there was a delay with coordinating the GI doctor, but in the end it all worked out, and he went back while feeling a bit less sad.

Results

The ENT went first, and she came out quicker than we expected. She said that everything went really well and the right ear looked great. She went into the left ear, cleaned out the fluid that was draining (because his ears started draining as soon as the packing from the first surgery got cleaned out) and took cultures. She said that she hopes these tubes will stay in until he’s 11 or 12, and that she will have to go in and remove them at that time. The GI doctor came out 45 minutes later, and told me that everything looked great. His esophagus looked like a healthy esophagus and that it looked infinitely better than his last endoscopy at Texas Children’s a few years ago. We were thrilled, absolutely thrilled, with this news because it meant that the diet and medications were actually working!

A week later the GI doctor called. His esophagus looked perfect, and his eosinophil levels were really low, >10 in most places of his esophagus! His stomach had higher levels at <30, and then his duodenum was <80. So yay for a great esophagus, but boo for bad looking stomach and duodenum. If he hadn’t been symptomatic then I would have just done and wait and see approach, but because his stomach has been hurting more, especially while on the diet, we decided to start him on a Pulmicort slurry twice daily. This is one of the only medicine treatments for EOE , so we will see how it works.

 

Finally a Link!

Then last week the ENT called. The results of the culture were back, and he grew 3 different types of bacteria from that culture. We saw her on Friday, and she said that two of the bacteria were typical upper respiratory ones (strep and staph), but the third was a bacteria only found in the mouth, esophagus, and stomach. Wait. He had stomach bacteria in his EAR? How? She is confident that this is related to the EOE. She said his body is in an inflammatory state and it’s going haywire. She is very concerned because his IGE blood levels were nearly 1700, and his blood eosinophil levels were high. We finally, FINALLY have a link between the EOE and his ears. I have been saying for the past few years that his flares don’t show up like typical EOE symptoms but as chronic thick ear glue.

Now What?

Well, now we continue on the path we are on. We keep up with the medications. We keep up with the food elimination diet. We see the allergist in May, the GI/EOE team in July, unless we need to see him sooner. Right now we are in a holding pattern. I am going to email the EOE team to let them know of the weird bacteria in his ear drainage. I am trying to continue to give him a “normal” childhood. He has no more physical restrictions. He is growing and thriving, and now we focus on making him healthy.
 

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