I get it.
I am not in control.
I thought I had everything planned out perfectly. I guess I became too confidant, because God reminded me that I am not calling the shots.
Brian was supposed to be having an endoscopy this morning. Unfortunately, he came down with the early signs of a sinus infection the beginning of last week. Still optimistic, I took him to an Urgent Care.
I left the visit stocked with the necessary over-the-counter remedies to combat Brian’s cold and an assurance that he would be fine for his scope.
Then Friday morning he awoke with a high fever.
I gave him Tylenol and monitored him throughout the day. His cold was gone, but the fever was persistent. When he awoke Sunday morning, his fever was high and he complained of a pain in his neck. Unlike previous illnesses, I could feel that one lymph node was larger than the other and it hurt him when I touched it.
We jumped into the car and headed to the emergency room, where they told me to continue to monitor his fever and the color and size of his lymph node. Secretly, I was holding out hope still that he would be ready for his test today.
When the nurse called to give me prep instructions yesterday, I had to tell her about his fever. After discussing it with a PA, it was determined that the best course of action was to delay the endoscopy till Friday.
Now everything is thrown off.
I had it planned out perfectly. The test was today, doctors’ appointment next Wednesday, with the results, and flying home on Friday. I’m starting to think I jinxed myself by reserving plane tickets.
Of course, as I suspected, Brian woke this morning fever free. I have kept him inside to avoid the rain and chill outside and to protect him from any other health issues before Friday.
Brian will undergo his fourth endoscopy on Friday to determine if he is allergic to the apples and pears (mostly apples) that he has been eating the past two months. If the test comes back negative, I will be able to continue feeding him apples and add a couple new foods to the regimen. If it is positive for eosinophils, then apples will be removed from his diet. Then we will repeat this whole process all over again in two months.
I will meet with his allergist and nutritionist next Wednesday, the 18th (please pray the results are in by then), and we will put a plan in place. I looked over the possible foods and have narrowed down my list. The nurses will perform skin tests to make sure the possible foods are safe, and then we will begin trialling them one at a time. His allergist will schedule a follow-up endoscopy for late January, and Brian and I will return to Philadelphia to see if he is reacting to the new foods.
Then, on Friday, November 20, Brian and I will board a very early flight to return home. Thankfully, my amazing sister is flying out here to help me get everything organized. We have been gone for twenty-two weeks (twenty-three when we leave finally)…154 days…over five months.
I am ready to go home.
While Brian entertains himself with trains, cars, and other toys, I am doing my best to start packing away the items filling our hotel room. I have suitcases half packed, boxes to donate, and boxes to ship. It would be a lot easier if Brian would stop unpacking the boxes and suitcases, though. 🙂
Some think I am crazy, but I will be hosting Thanksgiving the week after I return and my annual “Candles, Christmas and Cocktails” open house the week after that. I cannot wait to see my family and friends through those two events. Hopefully, I will begin to feel more like myself.
Last night, Brian clung to my arm while he slept. It is hard to imagine not sharing a bed every night when we return home. Believe me, I am thrilled to put Brian back in his own bed and have as restful a night sleep as possible, but I’m also terrified.
Brian and I have found a comfortable routine to our days and nights. We only need to worry about each other. Bringing Matt and Addi back into the mix will be difficult at first, but I know we will find our groove before long.
I am excited to be home in time for the holidays. This is my favorite time of year and I savor the time with my family and friends. I am missing out on far too many things happening at home, and I know home is where I need to be.
Still, Brian and I have a plan. Unless I find another option, we will return to CHOP every two months for endoscopies and follow-ups with his allergist here. We will continue with the plan, and hopefully, things will begin to fall into place.
Of course, I have his birthday planned out already. It may upset family members, but Brian’s party will be all about Brian. I will only serve food he is allowed to eat, which may make for an interesting selection. Brian will not be able to partake in Thanksgiving and Christmas delicacies, so his birthday party will be just for him. I would do anything for my Little Man.
Thank you to our family and friends for supporting us along the way, the FOP in Philadelphia and their president for adopting us and taking us under their wings, Mr. Thom for treating Brian like his grandson and spoiling him rotten, those who have hugged me when I pretended to be strong and given me more credit than I deserve, and for all the love from across the world.
Thank you, God, for reminding me that I am not in charge, and helping me to never forget just how blessed we are.