I think it is only fair that I begin this post with a warning…things are about to sound VERY confusing. Please bear with me while I try to explain.
Last Friday I heard from the GI department at the Children’s Hospital of Philadelphia. For a week I had been praying and holding my breath waiting for this call. The saddest part is that I don’t know what “answer” I was hoping to hear. Whatever they had to say, I knew a multitude of questions would follow.
So for the good news: Brian’s endoscopy and colonoscopy came back negative for any eosinophils. They found a single, large allergy cell, which they attribute to acid reflux. This means there were no eosinophils in the esophagus or his intestinal tract. Sounds promising, right?
Now for the bad news: All of the foods I have been feeding Brian up until seven weeks ago were not safe.
A negative result does not mean that Brian does not have eosinophilic esophagitis.
Allow me to try to explain.
Brian had his first endoscopy October 31, 2014. The biopsies showed an eosinophil count high enough to be diagnosed EoE. When we met with different doctors on February 2, 2015, they felt that it may not be accurate because Brian was not on a PPI, like Nexium, to rule out acid reflux. They placed him on Nexium, kept him on his regular diet of food and formula, and scheduled an endoscopy for March 30, 2015. The biopsies from the second scope showed a more than double increase in the eosinophils. From my understanding, since Brian was on Nexium, the only cause for the eosinophils would be that he was eating food that could be considered dangerous to him.
Unfortunately, unlike many food allergies, Brian shows outward signs to certain foods, and other foods cause issues that can be identified only through biopsies. This means that Brian’s list of “unsafe foods” may be a lot longer than we realized, and that the few foods I have clung to as safe, really are causing the most damage.
On July 30, 2015, we met with the EoE clinic at CHOP. In order to receive the most accurate results, the doctors removed ALL food from Brian’s diet and placed him on an elemental diet of just formula.
Fast forward to today and the various tests seem to show that Nexium counteracts any signs of acid reflux, but if left on food, the eosinophils will continue to be present, unless a safe food is identified.
As I write this, I glance repeatedly at my phone, willing it to ring with an appointment in the allergy clinic as soon as possible. Now that we have the results, the hard work lands in the capable hands of his Allergy Doctor and Nutritionist at CHOP. I am hoping they will run allergy tests for any external allergies (he still breaks out when he plays outside for any length of time) and determine if we can start a food trial.
It is customary for EoE patients to have a negative scope before they are allowed to begin food trials. If I am remembering my science classes at all accurately, this last test will serve as the control (Is that right?? Brain doesn’t want to work anymore). Now, the doctors will follow a plan of introducing foods one at a time into Brian’s diet. The trial foods will be determined based on allergy tests, previous reactions and other factors. Once a food is chosen, it will be added to Brian’s diet and then a repeat scope will be performed. If the results from that scope are negative, then the trial food is deemed safe. If eosinophils are present, then the trial food is avoided and we start over with another food.
I have read and heard that this process can be long and frustrating. My ultimate hope is to begin the trial and put a plan in place that can be monitored by the doctors at CHOP, but followed through by a doctor they recommend in Phoenix. But until my phone rings and an appointment is made, all of this is speculation on my part.
While it may be confusing to try to understand why I am not rejoicing with these results, the simplest reason I can give you is that I want this to be over. I want Brian to be on a path to living a happy, healthy life, and more than anything, I want to go home.
But, Matt and I made a choice together. We want the best possible care for Brian, which ensures the best possible future. I am committed and will hold on as long as it takes.
That doesn’t mean every day is easy. This morning I watched as Matt and Addi made their way through security. Their visit this past weekend was too short. Thankfully, Addi is a lot stronger than I am. Maybe that is due to her childhood innocence and the fact that she knows she will seem me soon. I’m struggling with the not knowing when that will be.
Uncertainty drives me crazy, and not having an appointment in place yet is pushing me towards a breakdown. I am living in a limbo – do I purchase plane tickets for Brian and I to come home, or tickets for Addi and Matt to visit again? Until my phone rings, I will not have an answer.
I am carried through by the kindness and support of everyone who is following our journey. I feel helpless because I want to do something, anything to show my appreciation and gratitude. It is not easy for me to be the one needing help. I pride myself on being there for others when they need it, and this experience has been humbling to say the very least.
For those of you back home with events Brian and I have missed, know how much I wish we could be there. Please know that we miss home and look forward to being back as soon as we can. Thank you for thinking of us. Your little messages on Facebook, texts and silly cards keep me smiling.
For those who have welcomed and taken care of us here, I will never be able to repay you for the strength you are giving to me. Thank you to everyone who offers me a warm place to go when days are tough.
Keep the prayers coming…our journey continues to move forward.
UPDATE: WE HAVE AN APPOINTMENT!! Meeting with the Allergist tomorrow at 1p.m. Wish us luck.