8 minute read
Braver Together
AMY TARPEIN
Elijah is a joy-filled five-year-old boy with a rare brain disorder, lissencephaly, and we are doing our best to care for him. When he was born, we were informed that his time was limited. The experts explained that a feeding tube could be necessary in the future, while also suggesting that we didn’t want to cause him pain or discomfort. Further, every time Elijah was intubated, the risk of airway failure increased. It was hard to imagine he might need a feeding tube, especially when he looked so plump and angelic. Taking all of this into account, I decided to hold off on a decision regarding a feeding tube.
Elijah continued to eat by mouth, though as time went by, it became evident that we needed to be more creative in finding ways for him to eat and stay healthy. Elijah’s weight was a significant concern, and we monitored it closely. He appeared to grow typically initially, but then his growth curve started to level off. By the time he was three years old, he weighed only 24 pounds, significantly below average for his age.
Finding foods that Elijah could safely swallow became more complicated, and we had to become more vigilant about his diet. His surrogate dad, Mike, helped him by bringing him a nightly peanut butter milkshake, which he loved. Despite the challenges, we remained committed to caring for Elijah and finding ways to help him enjoy life as much as possible.
Getting a G-tube
When Elijah was three and a half years old, we decided to go ahead with G-tube surgery. Even though it was a scary prospect, we knew it was the best thing for him. However, we had many questions and needed help to get good answers. Spend five minutes on Google, and you’ll find a long list of potential problems but little guidance on how to solve them.
On the morning of his surgery, as I stroked his hair and looked at his little body, I understood that this would be his source of strength. Despite the uncertainties, the medical team promised to guide me every step of the way. They directed me to a YouTube link. However, it was faulty, and the hospital staff needed to be made aware of the technical issue, leaving me feeling lost and confused.
After Elijah underwent surgery, I felt overwhelmed with a sense of responsibility and uncertainty. I didn’t know what to expect or how to deal with everything that followed. The nurses were constantly in and out, taking care of various things and ensuring everything was under control. I found it difficult keeping up with everything, especially since I simultaneously had to look after my sleepy and upset toddler.
One of the nurses eventually took some time to explain everything to us, but it was a brief explanation and I couldn’t retain much of the information. They kept referring to the YouTube link. I assumed it would provide me with additional information, but unfortunately, it still wasn’t working. The entire experience left me feeling more anxious and uncertain about what to do next.
During the first three days after we started using the pump, the medical staff tried to adjust it because Elijah kept vomiting after just thirty minutes of being on it. Unfortunately, the efforts of the staff didn’t help, and the situation didn’t improve. Despite this, we were still discharged from the hospital, which left me very concerned about Elijah’s condition. Before leaving, the medical team instructed me to refer to another YouTube video if I needed help operating the pump. When I tried to watch the video, it wasn’t functioning correctly, adding to my worries. I raised my concerns again to the team, but nothing was done to address the issue.
Back Home
After we returned home, we were looking forward to finally relaxing into a new normal. Unfortunately, things did not go as planned. Every time Elijah used the pump, he would experience excessive saliva, retching and vomiting, making it almost impossible for him to tolerate the device. We immediately contacted experts for help but we didn’t receive much assistance.
For a whole week, we desperately tried to find advice or a solution to Elijah’s problem. We searched online, read medical journals, and watched YouTube tutorials, but nothing worked. We did everything possible to make the pump more bearable for Elijah, but nothing helped. When we returned for our follow-up appointment, we were shocked to learn that Elijah had lost a pound. He was unable to handle the pump. The medical staff was equally surprised, as they had not anticipated such a negative outcome. We felt helpless and frustrated and wished we had received more support during this difficult time.
Elijah was admitted to the hospital and given an IV. They still tried to feed him with the pump, and he continued to vomit. We were sent home three days later. They told me to “keep playing with the pump,” to figure out what worked for him. It was two more weeks of me trying everything I could at home. With daily calls to the hospital and him vomiting so much, I thought, what did I do? He might die, and it is because I went ahead with this tube. We were back in the hospital three times in a month.
After much research and experimenting, I discovered that he could tolerate a fast bolus feed. It was a significant relief because he stopped vomiting every time he ate. However, he still experienced some vomiting at night, which was concerning.
We are braver together! People need a trusted community, especially when going through significant life struggles.
To address the issue, I contacted our GI department and spoke to the nutritionist dietitian every day for guidance and support. Despite a lack of ideas, I continued with my pleas for help. I remained determined to find a solution, knowing that we could overcome any obstacle with effort and collaboration.
After we sought a second opinion at a different hospital, a new doctor discussed motility with us and prescribed a low dose of erythromycin. It worked wonders for Elijah. Within twenty-four hours, he had stopped vomiting and he has gained 10 pounds in the last year.
A Plea for Collaboration
There has to be a better way to help doctors and patients learn how to deal with complex issues that can be solved and quality of life restored. There must be a practice so people are not alone in this journey, a map to available resources to help support you and your family.
We are braver together! People need a trusted community, especially when going through significant life struggles. We need resources, answers, and a safe place like the Oley Foundation to go to for those—a place that aims to provide education, advocacy and support services accessible to everybody along their journey.
Bad experiences are an opportunity to learn how to do things better. As Oley Foundation Executive Director Beth Gore says, “The things we go through don’t have to be repeated by others if we do it well.”
Two Years Later
Some things can’t be fixed, only carried, no matter how well intentioned you are. Today, five years old, Elijah continues to beat the odds. And while this was not my plan, I am truly blessed to be his momma. I can’t explain half the stuff that happens in our lives, but I know we are braver together.
Elijah’s Baby Bucket List
Elijah is quite the celebrity, not just among his nine older siblings! His devastating diagnosis led his single mother, Amy, and his siblings to create a bucket list to fill his lifetime with as much happiness and adventure as possible.
Elijah’s story has appeared on TV and radio, in print and online. He has over half a million followers from around the globe on social media platforms. His followers read about his latest experiences and enjoy videos of his infectious laughter and smile.
“Elijah is always happy, always laughing. It’s hard to stay sad when he’s around,” says Amy. “He is unconditional love and the embodiment of pure joy.”
Bucket List Adventures
Knowing Amy has a lot of experience traveling to places on Elijah’s Baby Bucket List, we asked her to share some of the things she and her family do to save money while traveling. We’ve compiled more tips on traveling on page 7 of the Winter 2023/2024 newsletter. Here are Amy ’s tips:
• We use reward points to get free hotel stays and save money on gas.
• We eat breakfast and sometimes dinner at the hotel. Or prepare meals in our hotel room to save money on food.
• When we eat out, we use coupons and look for discount codes that help provide cost effective meals.
• We skip drinks and buy our own from a grocery store or bring refillable water bottles. Drinks often add more to the cost than the food when dining out.
