I want to apologize for being so quiet lately. Our summer has been full of fun as well as changes. I haven’t had the emotional capacity to blog about everything, but just know it’s been happening, and we’ve been living up summer. Kasey is home full time now (YAY) but that’s also lead to a lot of change. Good change, bad change, but change nonetheless.
Chris had another EOE appointment, and I left feeling very frustrated. I feel like his current GI doctor just wants to do the same treatment for everyone. I feel like they’re going to immediately jump to medication no matter what. I want to know WHY and WHAT is going on, not just masking the symptoms. They aren’t concerned with his elevated EOS levels in his stomach and duodenum, even though he’s having physical symptoms. As long as the esophagus looks good, there’s no need for anything else. I also asked for a new round of patch testing and was denied, because his esophagus looked good. Who cares about the increase of stomach pain on the diet right? Oh and significant increase of overall blood IGE levels. Due to financial circumstances, we haven’t been as strict with the elimination diet as we need to be, and we can tell with symptoms. He’s much moodier. He melts down more often. He is bloated. His eye circles are back. His skin is itchier. He’s not as happy and lively. You can tell he’s not feeling well. We have to get back on the diet, and have to be very strict with it, all while living within our financial means.
And the Ears
Now if I didn’t comment and update about his ears, I would be failing everyone. I wish I had better news. Well, it’s kind of both. Good and bad. Anyhow, I’ll get right to it. We finally had his hearing test last week. This was the hearing test that shows whether the Tympanoplasty in both ears was successful in restoring his hearing. I am thrilled to admit, it was successful. His hearing looks amazing, minus a minor hearing loss at one certain decibel. The loss is so minimal, that the audiologist said his hearing is normal. Praise God right?! YES! I am praising God that the surgery was successful in that aspect. Bad news though? His right tube, the one we just did recently, is clogged. I got in to see the ENT today, and she confirmed that his tube is blocked with thick ear glue. It’s not able to drain properly because it’s so thick. It hasn’t pushed the tube out, because the tube is basically stuck in the new graft which means it’s clogged. Treatment? Ear drops twice a day for 2 weeks. If this doesn’t help? Another surgery.
Surgery Yet Again
Now I know with EOE he will have scopes, and he will have to be put under. I was hoping and praying that his ears would be wonderful and everything would be great. Maybe I was too positive or too hopeful? I don’t know, but I do know that I’m so frustrated. Last night he was sobbing because he had yet another doctor’s appointment. He cried to me, “It’s not fair. I am so tired of appointments.” I promised him that it was just looking and talking. If he has to have yet another ear surgery (so that would be 3 in a year), he’s going to melt down.
I don’t know the options. I do know this is all connected to the EOE. His ENT agrees. She says there’s absolutely no way that this is not connected. The ears are connected to the nose and the throat. It’s all connected. When she cultured the ear drainage from his last surgery, he had a bacteria in his drainage that is only found in the digestive tract. Let that ruminate for a minute. He had digestive tract bacteria in his ear drainage. Please, please tell me how it’s not connected then.
I’m frustrated because I feel like nobody is worried except for his ENT and myself. I realize they’re doctors and super busy. I get that. BUT. His ENT, we’ve seen a handful of times and she remembered everything about him the second appointment. She remembered his EOE, his symptoms, everything. She remembers. I don’t expect much from my son’s doctors, but I do expect them to remember a conversation we had not even a week ago. I do expect to be treated with respect and not talked down to. I do expect him to be considered, not just as a patient, but as a child.
I don’t know what now. Figure out a way to afford the diet. Figure out a way to get him feeling better? Figure out a way to get his ear unclogged so he can avoid yet another ear surgery? I don’t know. I really don’t. I’m frustrated. I’m let down. I’m so angry that my poor child keeps having the crap end of the stick thrown at him. I’m even more frustrated that in one of the largest cities in the United States, and one of the best children’s hospitals in the nation, wait times for a new provider are astronomical. It shouldn’t be like this. I guess, most of all, I need to pray. I need to find my way back into His Word, and have Faith and know He won’t leave us alone on this.