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The moment the family was expecting since Mathias was a baby finally arrived: Mathias had both his kidneys removed. His operation lasted 11 hours; 11 hours of endless waiting for his parents.
Before the surgery, Sabrina from the Child Life services took the necessary time with Mathias to go over the next steps with him. “All the work Sabrina does to help familiarize and prepare children for surgery is so important. Mathias can’t choose whether or not he has surgery, but getting to choose his teddy bear and hat makes him feel he has some control over the situation,” said Stéphanie, his mother.
Thanks to the Parental presence at induction program, supported by donors, Stéphanie was able to be present with her son until the time of anesthesia. “It makes you feel like you were with your child every step of the way; and because of that, he didn’t feel abandoned in any part of the process.”
Now that Mathias no longer has his kidneys, his feeding solution needs to be adjusted. The family will be supported by the staff of the Nephrology Department to help with the delicate dosage. His mother signed the papers for organ donation, the next big step that awaits Mathias. We wish the whole family a well-deserved respite and a speedy recovery to our brave Mathias!
I’m writing you from Mathias’ room, under the dim glow of little red, green and blue lights, listening to the beeping sounds that have become all too familiar. We’re on the 9th floor of the Montreal Children’s Hospital for Mathias’ sixth operation this year; the last preparatory surgery before the big one we’ve been dreading since he was a baby.
Mathias is 8 years old, and he’ll soon have both his kidneys removed. Ever since he was diagnosed with congenital nephrotic syndrome at one month old, the idea of a transplant has cast a shadow over our lives. Over the last year, continuous dialysis has saved Mathias’ life. It eliminates the waste and excess fluid his kidneys cannot process. Without this treatment, my son would die from an accumulation of toxins in his blood. Your donations keep him alive.
Did you know that pediatric dialysis is only available in Montreal? One year ago, we drove five hours to get to the Children’s so Mathias could have a permanent catheter placed in his stomach. The nurses in nephrology gave me advanced training so I could offer Mathias complex care at home. We left the hospital with the machine, pouches of solution, dressing materials and a new routine to follow.
Now, every night at bedtime, Mathias watches his mother put on a surgical mask and sterile gloves. I connect him to his machine and to the feeding bag through another tube in his stomach. I leave his room feeling scared every time: Did I contaminate him? Did I forget something? But you’ve been there for me, more than once.
Mathias also had other health problems. For years, he would have a vasovagal episode when I fed him. He’d break out in a sweat and vomit repeatedly. I was distraught, until doctors at the Children’s diagnosed the condition.
On top of end-stage renal disease, Mathias has Dumping Syndrome. Thanks to their expertise, the doctors were able to prescribe an appropriate course of medication and tailor his diet to his needs. But it took some getting used to.
For the first few days, Mathias reacted badly to his new nighttime diet. I spent Christmas Eve on the phone with Dr. Zappitelli, who recalculated Mathias’ treatment to increase his comfort, determining how many millilitres I should give him per hour and for how long. When the doctor and nurse clinician give you their number and answer your text messages as soon as you send them, you know you’re at a hospital that goes above and beyond.
This might surprise you, but despite all these challenges, Mathias doesn’t feel different from other kids. He goes to school and plays in the park with his buddies. He gets to be a kid and to be a part of his community.
We’re able to raise Mathias in our home town, surrounded by his friends, with access to expert healthcare. We were able to keep our family together, all because you support the Children’s.
I can’t ask you to donate a kidney, but I can ask you to make a donation so that families like mine can continue to receive expert healthcare and outstanding support. In a way, when you give to the Children’s, you’re giving the gift of life to sick children and their families, whether they come from Montreal or elsewhere.
Stéphanie, Mathias’ mom
P.S. Your donations allow pediatric doctors and nurses to remain experts in their field, benefitting parents like me. Your donations have kept Mathias alive while we wait for his transplant. Please give!