Tuesday, May 27, 2014

A smile.

As an update to my last post, Jude had his EGD on April 24, 2014. The long-awaited day finally arrived and it could not have gone more smoothly. It's about a five minute drive to the outpatient center where we had it done and the staff were soo good to us. Jude was such a good sport, as always, and didn't complain about us having to wake him up early and wait for a couple hours without being able to eat or drink anything. We know our prayers and the prayers of many friends and family were answered this day. We really felt extra strength with us.

This was probably our smoothest EGD yet. It was our fourth. They let me take Jude all the way into the Operating Room (Scope Room?). I stood by his side, the anesthesiologist put the mask on him, and before he could even fight it he was asleep. He never had to remember me leaving him or even being in that room. They only take about fifteen minutes. It doesn't take long to look at such a tiny little tummy. We anxiously await in the waiting room waiting on the results. The first three times it was not good. We were so hopeful that maybe this time would be different.

We were sitting on the far end of the waiting room and before we knew it Dr. Brigman opened the door. I popped up and waved so she would know where we were. I will never forget seeing this cute lady eagerly trekking across the waiting room with a big smile on her face. I think I turned to Dan and said, "She's smiling!!" There was so much hope. I don't remember exactly what she said, but in a few words she told us that he was all healed and looked "perfect." I instantly burst into tears of joy! I kept asking her in ten different ways to tell me again. We skipped back to the post-operative area and we got to see our baby, who was still under the effects of the anesthesia. They pulled a rocking chair over for me to sit in and put Jude facing me on my lap. He didn't have a hard time recovering like last time. We brought some frozen fruit juice popsicles for him and he munched on those and really liked them. I'm sure they felt good on his sore throat. He was a doll and we were all on cloud nine, including little Abe who was more than willing to go along for the ride and support his big brother and bestest buddy.

Our faithful friend, George, came along for moral support.
So, it looked good but we still didn't know for sure until the biopsy results came back. I got a call while at the park with a bunch of friends and, after having not left my phone for days awaiting this phone call... I missed it. I called the number back and they said their office was closed on Fridays and there was no way to leave a message or speak to anyone unless you pressed the number saying you were a doctor. So I pretended to be a doctor for a second to get through and they were able to transfer me to the nurse. She told me she had good news and that he had ZERO EOSINOPHILS! This was our big goal from day one and we finally achieved it. I don't remember the exact numbers, but he had 80 on his first biopsy (80 thousand, or million, or something.. per high powered field). The second time he had 60 something, the third time he had 25.

So now he is perfectly healed on the inside. We know take him off the steroid he was on (Pulmicort slurry) for about a month and a half... and then the fun begins. We redo allergy testing in mid-June and then start reintroducing foods! The doctor wants to get some hearty things in his diet so, if he tests negative for these things, we will start out with


HELLO! It's very exciting. We will give him beans for one week and if all seems well, we will add rice the next week. If all goes well again, we will add potatoes and then have another EGD. And if it is still clear with zero eosinophils, we will know those foods are safe for him and then we can do it again with more foods! If it is bad again, then that is a huge bummer because you have to take away these foods he was just enjoying. The way I understand it, some people with EoE do well and are able to add more and more foods and it's almost like a positive feedback cycle. While some just continue to reject almost everything they try to add and are left with only a few foods they can eat. Let's hope for the first scenario. I am hopeful this will be the case with Jude since his Eosinophil count went down with each EGD and the second to last one was almost clear. I like to hope there were only one or two things in his diet then that were causing the irritation. We just need to figure out what those things are. I hope he will continue to "grow out" of his allergies and eventually he will have a relatively normal diet and not have to rely so heavily on Neocate for his nutrition.

We are so excited and grateful beyond expression for how he is progressing and how this last EGD went!!! Thank you for all your prayers and well wishes. We truly felt your strength. We are looking forward to our next step and will keep you posted!