23/01/2023
Bentlee is a 7-year-old kid. For the most part we thought he was healthy except for some minor illness that most children get. He's loving fun and energetic, and he always did well in his yearly checkups. On September 6th, 2022, I took him to his doctor because he had thrush and couldn’t get completely rid of it. The doctor ordered blood work to see if there was an underlying issue. I received a call to take him to Children's hospital to have blood tests checked. The next day, September 7th, was the day our world turned upside down.
We went to the children's ER and labs confirmed he was severely anemic, had protein in his urine and his electrolytes were abnormal. We were admitted to the hospital and went to ICU. At that time, we were unsure of what the cause was, but his kidneys were failing. They placed a central venous catheter in his central vein through his neck for emergency dialysis. They also placed a central line in his thigh and wrist. We stayed in ICU for 3 days. We then got moved to a room in the nephrology unit. They ran more blood tests, did x-rays, ultrasounds, MRIs, and CT scans. He was doing dialysis almost daily to stabilize his blood levels. He also had two blood transfusions.
During our stay in the hospital, Bentlee developed seizures. He had a total of 5 in two days. They performed an EGG and found that he had abnormalities in the back of his brain. Illness and other stressors that are hard on his body can trigger seizures. He was put on medication to treat them. Thankfully he has not had any since.
I cannot begin to describe how much was done and the number of emotions we went through. After two long weeks, we finally got to go home. They removed all his central lines but he had to have a tunneled hemodialysis line placed in his chest above his collarbone. This is a more permanent line for hemodialysis. His diagnosis was chronic kidney failure, and he is in stage 5. The cause was a birth defect - his kidneys are only a little bigger than an infant's. He was born with regular size kidneys, but they just didn't grow with him. He was sent home with a lot of meds along with a fluid restriction and a strict renal diet. I had to check his blood pressure every few hours. We had to go to Children's 3 days a week to do hemodialysis which was a 4-hour treatment. In October He had surgery for the placement of his peritoneal catheter so we could do dialysis at home.
At the beginning of November, the exit wound site was healed, and we were able to start dialysis at home that night. Since then, and until he can receive a new kidney, he will continue to have dialysis treatment for hours every night while he sleeps.
We are trying our best to get back to some sort of normalcy. As normal as we can be while waiting for Bentlee to get healthy enough for a transplant. With help from friends, family and the community, I have been fortunate enough to be able to stay home to care for Bentlee, but his journey is far from over. While he has returned to school full-time, there are days that he isn’t able to make it through without not feeling well and needs picked up early. With that, it has become difficult for me to go back to work.
My hope is to use this page as a way to provide updates on Bentlee’s health and journey as well as bring awareness to this life-threatening illness. If we had not taken Bentlee to the doctor when we did, we do not know that he would be here today. We are thankful he is on the road to recovery but we also know we aren’t in the clear yet.
If anyone has experienced something similar to Bentlee, we would love to hear your story. We appreciate any and all support and look forward to growing this community.
