I feel I should start this post with an apology.
I’m sorry I didn’t post immediately with the information I received from the doctors. I’m sorry I have not been quick to respond to messages and phone calls. In some ways, I’m sorry I’m not stronger.
It wasn’t the plan the doctors put in place that made Thursday a rough day. In fact, I was prepared for this plan. Instead, it was talking to Matt and coming to the realization that two months are turning into four.
I am grateful that Matt had the strength to write what he did. He told me I should post something and I said I couldn’t, not yet. Besides, what I am about to write is technical. Matt spoke from the heart of what we are both feeling right now.
Through this entire process I have been worried about meeting with the doctors. My biggest fear was Brian and I would be dismissed, like has happened before. Thankfully, that was not the case.
The doctors (we met with an allergist, gastroenterologist and nutritionist) agree that something is wrong. Unfortunately, they do not feel that the diagnosis of Eosinophilic Esophagitis alone is accurate.
When Brian had his first two endoscopies and colonoscopies, the doctors did not place him on an acid reducer for a significant amount of time before the tests. In order to have the most accurate test results possible, and because Brian refuses most medications, the GI specialist decided to place Brian on an elemental diet for the next four to six weeks (actual time will be determined when I talk to scheduling on Monday), which consists of a minimum of six 8oz bottles a day of highly concentrated formula and water only. At the end of this time frame, Brian will have another endoscopy and colonoscopy. The hope is that the biopsies will show an accurate reading and his esophagus will have a chance to heal.
This decision did not surprise me. I knew that this was the strongest possibility and, honestly, I expected it to be a longer time frame.
Our biggest problem right now is that Brian is showing so many symptoms, and not all of them are consistent with EoE. When he breaks out in hives, vomits or has diarrhea, those are signs of something else. It is possible that in addition to EoE, he also has regular food allergies, Eosinophilic gastroenteritis and/or FPIES. Hopefully, by eliminating all food from his diet, the doctors will be able to pinpoint the causes for his symptoms. The one thing they can agree on is that there are multiple things wrong, and they are going to figure out what.
Hearing all of that was the easy part.
I knew he would have to have more tests and I knew there may be cause for us to go back and forth, but I really didn’t want to acknowledge the possibility that we are not coming home anytime soon.
This is where I wish I were stronger. I wish I could tell you that I took the news and steamrolled ahead, but the truth is I fell apart. Luckily, Brian was snuggled up next to me sound asleep, so I was free to just let it out. It was helpful.
If you message or call, I cannot guarantee that I will respond immediately or that I won’t burst into tears during the conversations, but please know how very blessed I feel to have each and every one of you, and do not stop reaching out. All of the support for Brian and me here and Matt and Addi back home is…I cannot think of the right word to describe it…
Maybe love works best. You are showing us an outpouring of love and that is what will help us bridge the gap of miles and time.
We love you, we are grateful for you, and we are not ashamed to admit we need all of you and your prayers and strength to get us through this. Saying “thank you” will never be enough.
Happy birthday to the greatest husband and daddy in the world. Brian will give you a big hug soon. Love you.