After three weeks of processing, I am ready to share about how the scoping went and how the fasting affected us (well at least, so far!).
First of all, my whole family, but especially me because I am writing this and I am the momma, wants to thank all of you who thought of us, sent us good vibes, prayed and/or fasted with us Sunday February 10th. Evan and I had been planning that for a few months, but we didn't really think about opening up about it to others. Mostly because it felt kind of showy (hey, look at us!) and that it wouldn't really interest others. Plus, so many many people struggle with health or have children with health issues, we are not so special or so unique. But we were amazed and touched at the outpouring of love for our little boys and family. So thank you. Thank you sincerely from us. It was very special for us.
At the time of the fast, I had a scope date set for Kyle that Friday in order to obtain a baseline before starting the new drug. Dr. Mizell (our family hero) had planned just a colonoscopy because that is where all of Kyle's previous problems have been found. On Wednesday, as I was driving (after the fast), I randomly thought--I thought it was random at the time, but it was really a small miracle--we should add an endoscopy. I had one reason, there had been some areas of concern in August that were a factor in his last surgery, but we all believed the surgery would fix that and that there should be nothing of concern.
Day of surgery: Dr. Mizell met me in the waiting room, I said, "Did you get my message about adding an endoscopy?" Dr. Mizell, "Yes, it is already on the schedule."
Fast forward about an hour and he met me in the consultation room before I could go back and met Kyle in recovery. He asked me why I had wanted to add the EGD, I told him no great reason, just to check that all those areas of concern had healed and resolved themselves with the surgery in September.
He then said that he was not prepared for what he found and had no indication that it would look like this. Out came the paper with the small pictures all in a line taken with the camera scope. Kyle was bleeding in multiple multiple areas of his stomach---as Evan describes it, it is like looking at little red stars everywhere in Kyle's stomach. Not only that but there were huge bands ringing his duodenum (beginning of his small intestines, immediately after the stomach) of extra tissue (at this time we were unsure what exactly it was).
The day before the surgery, the feeding therapist had directed me in allowing Kyle to make his own food choices---meaning no more set amounts, no more power struggles over food. She believes that some of his pain is real and some "made up" (and yes, I am so angry about that statement) and until we could sort it all out---we should just end the battle. Little did she know that Kyle was fighting me on eating for at least a month because he was bleeding internally. And, I felt like an idiot, because the gauze bandages around his button had been crusted in blood and I didn't realize the significance of that. So part of the finding from the scope has been diffuse internal bleeding of the stomach. It has been a devastating realization, although it is not gushing blood, more like leaking blood.
After waiting a very very long 7 days, the biopsy results came back. It was a little longer than normal because they were significant enough to need extra opinions. The biopsy results were not as strongly worded as Dr. Mizell knew they should be, because from his years of experience he knew just from looking at the bowels that it was more than chronic inflammation. The extra tissue is white blood cell tissue made up of nuetrophils, which are the primary component of pus, too many can cause even more damage than eosinophils (the current problem in Kyle's lower bowels).
Going back just a few months, after Kyle had his surgery in September to wrap his stomach around his esophagus in order to stop his reflux, we weaned him off his antacids. He showed no increased signs of discomfort and we believed that we had eliminated the need for this expensive drug from his life. Yay!
Wrong again Team Kyle!
Kyle over produces stomach acid (we did a fasting blood draw of his gastrin levels last week to confirm). With no antacid to keep it in check, it ate away at his stomach lining and duodenum. It was so bad that his stomach is bleeding and his intestines are trying to protect itself with neutrophils. He is too hyperacidic for his body to protect himself from the acid. We immediately got back on antacids.
However, this condition is very unusual in a child of Kyle's age. Then again, as Dr. Mizell says, "It is Kyle we are talking about here." We are currently in the process of evaluating him for a very rare, very serious disease called Zollinger-Ellison syndrome. This is where there are tumor(s) present in the body that secrete gastrin (the hormone that causes us to produce stomach acid). Often times the stomach acid is too much for an antacid to control. You can search for the tumors but there are multiple possible location of the tumors. I have read different numbers on this, but as many as 50% of the tumors are malignant and can spread. In those cases chemotherapy is needed to cure the syndrome. Kyle's gastrin levels are 200% above the normal; however, often times ZES patients can show 1100%-2000% above normal. So although Kyle is abnormal and concerning in levels, he is not abnormal enough for a conclusive diagnosis at this point. He is also very young. As rare as this disease is, Evan and I have only found case studies and research where the youngest patient is seven.
At this point, we are waiting. Waiting to redo the fasting gastrin levels, waiting for Dr. Mizell to do more research because with the rarity of the disease, he has never had a patient with it. Kyle is almost exclusively being fed through his tube. We have added five bolus feeds during the day to take the place of meals and snacks. We are waiting to allow Kyle's body to heal his stomach, but as I found today from the blood around his g-tube...that is not happening. We are just waiting.
So if in the mean time, I am not so quick getting back to you, I am a little absent in my communication, or forget important events and well wishing---please forgive me. I am just trying to use all my strength to hold it together for our family. Oh, and I think I forgot to mention here on the blog---but we are moving in 7 days. (Don't worry just a temporary move a few miles away until Evan graduates at the beginning of May)
