I have been reminded lately that life is short and that life is not always fair. Therefore, I think it is especially important to give thanks for the blessings we are given in life. Last week, we were shocked and thrilled to get back almost totally and completely "clean" results from Cole Reynolds' latest endoscopy. Let me explain.
After a 5 to 6 month trial on soy the second half of last year, Cole had an endoscopy in December that was "dirty" pretty much from top to bottom. We were crushed at the time. We had no idea from his behavior or other circumstantial evidence that he would be inflammed because of the soy. Soy is in EVERYTHING and is a common substitute for milk, so we were happy that everything seemed to be working out. Despite having good visual results, the biopsy revealed very high levels of inflammation from top to bottom (though always more significantly inflammed at the bottom). It was really our first food trial and we had failed. For many reasons, this was very demoralizing for us. All we could do was remove the soy and wait. We waited for about three to four months for the inflammation to subside and then we did another endoscopy. Visually the results looked almost perfect. Dr. Russo said that the very bottom where the esophagus meets the stomach looked a little puffy, but really he wasn't worried. The biopsy results showed that the inflammation at the top and middle were gone but the distal esophagus remained inflammed. Much less than the December test, but still at a concerning level. We had been off of soy for long enough that we thought that there shouldn't be any inflammation. We were very discouraged. Since there had been some signs of reflux, we started Cole on daily Prevacid treatment. The levels of eosinophils present in the distal esophagus COULD also be consistent with GERD so it was worth a try.
In June, I decided to take a new job. Our insurance at Weil was almost unbelievable and covered the endoscopies 100%. We wanted to get one more in before I left to see if the inflammation had gone down since the April scope. At an appointment with Dr. Russo, we discussed our options on the course of action if the inflammation had subsided. Because Cole's diet is so restricted and because we believe the risks/side effects of the medication are low, we usually opt to expand diet. We discussed what food we could add back. He explained that milk, egg and wheat are the top three most likely triggers of inflammation in EoE patients. He put peanuts/nuts and soy much further down the list. Since soy was out and since Cole had tested positive to a peanut allergy when we did skin prick testing, I raised the possibility of introducing wheat. Dr. Russo was very reluctant and recommended we try fish/shellfish. Now, for a kid that doesn't really eat anything other than baby food, I couldn't imagine that fish/shellfish would actually effectively exand his diet in the way we were seeking to do. I told Dr. Russo that I understood that wheat was likely to cause inflammation and that while that was certainly the last thing in the world I would want to do purposefully, I thought there would be value in knowing now if wheat was one of his triggers. At some point we would want to know anyway since, like soy, it is in EVERYTHING. We scheduled an endoscopy for June and decided to wait and make a decision based on the information from that scope. Early morning on the day of the endoscopy, we had had an uncharictaristic thunderstorm. When we arrived at the surgery center, there was no power. We checked in and went through all the pre-scope procedure and waited for the power. When it was about 7:45 (the endoscopy was scheduled for 7:30), Dr. Russo said we could wait for the power and do the endoscopy that day or we could reschedule. Joel and I had been very hesitant to do the endoscopy for some reason and we decided that this was God's way of telling us to wait. We decided that although the last scope was not "clean" it was still possible to use it as a baseline and so we would proceed with introducing wheat into Cole's diet.
I took Cole in for another check-up the first week of July. I told Dr. Russo that we were nearly certain the wheat experiment was not going well even though he had not been eating that much of it. We had been hopeful that introducing wheat would open all kinds of Cole friendly food options that he would accept, but that had not turned out to be the case. Despite eating moderate amounts of wheat, we were convinced he was inflamed because the number of his vomits were up, he had been complaining of stomachaches and his food refusals were surging. We scheduled an endoscopy for July 18 to give him a little more time to get the wheat into his system. Between the appointment and the endoscopy, we tried to make sure he had a meaningful exposure to wheat. It was painful to do so, because we both kind of viewed it as pumping poison into our baby. We gave him as much as we could stomach until about three days before the endoscopy when we just could not keep trying to get him to eat wheat out of fear we were making him suffer.
After the endoscopy, which went well as always, Dr. Russo came to talk to us. As he had on all but one occasion (and Cole has had 7 endoscopies), Dr. Russo said he believed from a visual perspective Cole was clean. He didn't see any evidence of inflammation. In fact, he said his esophagus, stomach and upper intestine looked perfect. I asked whether the slight puffiness that had been present in April was still there. He said that it was not. Because we had receive similar news before only to be devastated to learn that he was in fact inflammed, we really didn't get our hopes up. We still assumed that the biopsy would confirm inflammation. Nevertheless, we prayed, as we do every day, that he not be inflammed.
Dr. Russo was out the next week on vacation. Usually we get the results in two days. This time it was nearly a week because Dr. Russo had to review the results and give his nurse approval to give them to us. Joel called me last Thursday morning and said that he had received the results and that there was virtually no inflammation. 3 eosinophils per high powered field was the max. He didn't know whether that was the distal end of his esophagus or not, but it didn't matter. Even if it was, that is within limits that would not raise anybody's concern. I was speechless. Joel was clearly fighting back tears. We had doubted and we had been shown God's mercy in being wrong.
This is great news. There is no doubt about it. It tells us that at least while Cole is on his steroid medication he can tolerate wheat. That will undoubtedly increase the quality of his life. We feel blessed beyond measure. We pray now that he have the desire to eat. We will also continue to pray that he "pass" other food trials and, ultimately, that he be healed completely.
Back to blessings. This is certainly a blessing but in truth we receive blessings big and small every day. God gives them willingly and joyfully, and all we have to do is say "thank you" in return. So, thank you Lord for blessing my baby boy.
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