Last Friday, Brian behaved like a trooper during his fourth endoscopy in just over a year. He bounced into the waiting room, allowed the nurse to put an identification band on him, and did not cry even once when they did his vital check.
Just like in September, the procedure went off beautifully, and I was by his side when he opened his eyes. Thankfully, unlike last time, Brian’s blood sugar remained normal and there was no need to urge him to drink lots of formula when he awoke (of course, I did ask the anesthesiologist to make sure Brian had plenty of anti nausea medication – the nice man was feeling generous and offered to give him three different types!). When we arrived back at the hotel, there was no vomit to clean up or baths to be given. Brian went about his life like it was a normal day.
The GI doctor, who performed the scope, told me things looked good and any possible areas were biopsied.
Then the waiting game began.
To distract ourselves, I focused on packing up our hotel room, and Brian focused on pulling everything back out. It was a tedious process.
But we still found time to have fun during our last few days here.
My cousin was gracious enough to rake the leaves in her backyard into giant piles. Brian proceeded to bury himself, run through and throw the leaves in various directions. It is one beautiful memory that is difficult to recreate in Phoenix.
On Tuesday evening, my sister arrived to help bring us home. It felt like a huge weight was lifted from my shoulders when I finally saw her. It has been so long and I don’t think I realized just how much I was missing her in my every day life.
With my “Time to Leave” plan in full motion, I waited for Brian’s appointment to arrive.
Thankfully, the test results are in our favor! Apples are in for the long haul!
Brian was beyond helpful with his allergist, even going so far as to remind her which tools she needed to use to check him.
When it came time to do skin tests, his demeanor was not as accommodating. I think the process of holding his arm out straight brought back flashes of IVs and hospital stays.
We decided to test lima beans (sorry, dad) and white potatoes to see if there was an obvious reaction. At the last minute, Dr. Brown included lamb as a potential protein in his diet.
My sister said it best with, “Maybe he is supposed to be a vegetarian,” when Brian showed a strong reaction to the lamb. Now all we have left to hope for is chicken, which won’t be trialled for quite a while still.
A negative reaction to white potatoes and lima beans means we have two more potential foods to try over the next couple months. I knew going into the appointment that I wanted to add white potatoes, but I won’t decide on the second food (either bananas or lima beans) until we return home.
Once we knew the foods to try, the nutritionist came in to discuss Brian’s current input. He is far below the caloric intake she would like for his formula. In order to increase calories, each bottle must now be six scoops of formula to eight ounces of water, concentrating it even more than before.
If over the next couple months Brian does not increase in weight or begins to refuse his formula, then a feeding tube will be discussed.
Before we left, we had an appointment on the books for February 11 with the EoE clinic. Brian will have another endoscopy a few days before the appointment to see if his new foods are causing an eosinophil reaction.
We left the appointment and headed straight to the FOP Lodge, where I knew I could get my hands on fresh french fries.
Through this whole process, Brian has consistently asked for one thing…french fries.
I put the order in (side note…the nutritionist is not worried about the oils, as long as he doesn’t react) and Brian began to demand that I “go get them, now!” over and over until the fries finally arrived.
Saying that Brian morphed into a different child is an understatement.
A huge smile took over his face as he began to shovel fries into his mouth. Suddenly, he was full of kisses and hugs for the people around him. He climbed up to his game at the bar and graciously shared his fries with Uncle Neil, along with everyone else who stopped to fawn over him. People who have watched for the last three months were amazed as Brian babbled endlessly and jumped into the photo booth for multiple picture opportunities.
It is amazing what a basket of fries can do.
At the end of the night, Brian even allowed Mr. Thom to put him in his carseat. For the first time since we met in August, Mr. Thom was speechless.
It was the perfect way to say goodbye to the men and women who have gone above and beyond to make us feel at home. I am going to miss all of them more than they know and will be counting the days till I can see them in February.
Now, Kelly and I are checked in for our flight tomorrow morning. We are going to take one last tour around our grandparents’ neighborhoods and visit with family tonight before boarding a plane very early Friday.
It feels like Brian and I have been here forever. I cannot wait to return home, but it is bittersweet to say goodbye.
But, like I told my cousin yesterday, we will be back.
This is not goodbye, just see you soon.