Once upon a time, I was an optimist. As a young girl, I believed that good things happen to good people and bad things happen to bad people. As an adult, I am not as naive and I understand that difficult situations can happen to the best of people.
I am not implying that I am the “best of people,” but I would like to think that I am a good person. I would, and have many times, drop everything if a friend or family member needs me. I try my hardest to put others first and I’m not one to sit idly by while others do all the work.
But I have to admit, the past eight months have taken their toll on me.
Leaving Philadelphia was a lot harder than I thought it would be. I didn’t realize how much I had come to depend on the people I met to get me through each day. I didn’t realize how much I would miss Thursday night prime rib dinners at the FOP Lodge with Mr. Thom. I didn’t realize how much it would hurt to say goodbye to my family and new friends.
It may seem silly since Brian and I will be back sooner than later, but for almost six months, we lived in a safe and controlled bubble. I knew exactly what Brian was eating or being exposed to. Once we returned home, the playing field changed.
We arrived home the Friday before Thanksgiving. Since I have a history of taking on a little too much, Thanksgiving with family was being held at our house. Matt was wonderful and took the week of Thanksgiving off to help me ease back into my routine. We prepared for Brian to be able to eat plain potatoes and lima beans.
I even made him a potato crust apple pie.
But when Brian awoke Thanksgiving morning, he was in no shape to try any foods and was not interested in his bottle either. By the end of the night, his fever was coming dangerously close to 106.
Frustrated by these high fevers without any other symptoms, we checked his blood sugar (it was fine), and did our best to bring his fever down with suppositories and damp cloths. Luckily, by morning he was feeling much better.
When we met with the local allergist we had found and filled him in on the recent fever episode, he decided to check Brian for Reoccurring Fever Syndrome (yep, let’s add another issue to the list!), as well as some other possible genetic conditions which could cause his unexplained high fevers. He also put a game plan in place for the next round of food trials and allergy tests. Aside from being bored with the extended appointment, Brian did wonderful and made sure to remind the doctor to use every tool during the exam. Before we left, another set of skin tests was performed and it looks like we are adding rabbit to his list of allergies. This proves to be a minor issue since we own a rabbit, but the doctor assured us that Brian would be fine as long as we limited his exposure and washed his hands if he were to touch Dodger (yes, our rabbit is named after the Dodgers. We used to have an Irish and Cubby, as well).
I took everything the allergist said (including the willingness to work with CHOP and any GI specialist we found) and an order for a large amount of blood, and dove into the month of December.
Every time I went to a grocery store, I would scour the frozen potatoes section for safe french fries or hash browns. I began to buy potatoes in bulk and discovered many ways to cook them. I bought a dozen cans of lima beans and tried to incorporate them into his diet on a daily basis. Brian can be heard asking for “tatoes and beans” pretty much every day now.
Brian turned three on December 17, and doing my best to make it feel like a special day, we went to In ‘n Out as soon as they opened and bought three orders of french fries (they are the only fast food restaurant with safe fries, using only three ingredients). Brian was thrilled. Matt says we now hold the record for the shortest “Sweeney” birthday party. True to my word, we served only french fries, apple sauce and apple juice. We are grateful to our family and friends who were able to attend, and beyond appreciative of the understanding and acceptance of our limited menu. To end the party, I presented Brian with a “cake” made of apple chips and french fries piled around a candle. Brian loved being able to blow out a candle and enjoyed eating his french fries.
Brian had no problem returning home. He ran right into the house and went nuts seeing all of his toys again and his room. He played with his cousins and helped me prepare our home for Christmas. Listening to his sister, he quickly learned the words to Jingle Bells and Rudolph the Red Nose Reindeer. He can imitate Santa and randomly yells out, “Ho, ho, ho, Merry Christmas!” He was elated Christmas morning when he walked out to see a train table and didn’t seem to understand the concept of opening all of his presents. He would open one and demand that I take it out of the box. Addi was done with her presents quickly, while Brian’s pile remained untouched as he played with his train table or the first present he opened.
For Brian, life was back to normal. He had his mommy, and now daddy and sissy were around too.
For me, it has been a lot harder.
I have had a difficult time finding my place again. I’m not ashamed to say that I am overwhelmed and burnt out. Honestly, I just need a break.
I need a break from the string of bad news that has assaulted our family.
Most recently was this past Tuesday.
After diagnosing Brian with hypoglycemia while in the hospital in Philadelphia, I made an appointment with the endocrinologist we saw when Brian was nine months old.
While sitting in the doctor’s office, Brian began to act a little off. The doctor brought me a glucometer and it showed that Brian’s sugars were low. After encouraging Brian to eat some fruit snacks, he began to perk up. I showed the doctor Brian’s blood test results after his twenty-four hour fast (done while he was in the hospital) and she told me it confirmed that Brian is not making the proper levels of growth hormone. When his sugars were low, his growth hormone was very low. Since I had his blood results, she decided she did not need to order more bloodwork, but did want to have an x-ray of his hand (to check growth plate and use as a monitoring tool) and a MRI of his brain to determine if there is a cyst or tumor on his pituitary gland causing the low growth hormone. Brian will have to be put under anesthesia for the MRI. She also instructed me to carry a glucometer with me at all times and keep one handy at home. This means more sugar checks and not just when he is fasting or sick.
In addition to the tests, I will be taught how to give Brian hormone injections every night. Hopefully the issue will resolve quickly, but I am preparing for the reality that he may need these shots until he hits puberty.
As a silver lining, his doctor does have a couple GI doctors she can recommend who are local.
Needless to say, Tuesday was a low point for me. I have been fighting for the best possible care for Brian. I’m trying my best to keep it together and it was obvious as I sat at his appointment that I am off my game. Unlike other appointments, I was having a hard time remembering details and was not as organized as normal. Luckily, his doctor is patient and took plenty of time to calm Brian and talk me through things.
She is optimistic that once we begin the hormone injections Brian’s appetite will increase, which should keep me from having to discuss a feeding tube with his EOE team in February. Right now he is not gaining weight and has begun to fall off the growth chart. We will return to Philadelphia in February to have Brian scoped again and to meet with his team to see if potatoes and lima beans are safe. From there it will be decided which new foods will be added to Brian’s diet.
It is a lot to remember, a lot to take in, and a lot to deal with day to day. Brian is strong and happy. He powers through these tests like a champ. And the bright side? All of these issues and conditions are being identified when he is young and I have found the best doctors to help him.
But, I’m not perfect. I’m not a supermom. I’m doing the best that I can and I fall down a lot. Some days are harder than others and some days the tears fall too easily. Still, in the words of Tim McGraw, “I will not fall down without getting up.”