OHF Stories is a new initiative from the Oxalosis & Hyperoxaluria Foundation intended to heighten awareness of our rare disease through the stories of families living with it. Our first author is Kristi Ouimet, who many of you may know, mother of two children with PH1.
We invite any family with a story to tell to contact us. The more information available to the public, the scientific community & legislators, the better chance we have for more research, more understanding and, eventually, a cure.
By Kristi Ouimet:
Matthew needed several medicines that would take me all day to get him to take without spitting them all up. He also needed more nutrition then I was able to provide. We needed to get a G Tube (gastrointestinal tube) placed in his abdomen that would allow us to get the meds and nutrients directly into his stomach. Our nurse said we would love it. I thought how could we possibly love something that was going to be surgically placed in our son? Need? yes, love? No. Less than a week after getting the G Tube I proudly declared I did indeed love the G Tube. Matthew could be sleeping and I could give him meds or feeds. He didn’t taste it and it made life so much easier!
Matthew’s team explained to me he would need to have a peritoneal catheter placed and begin daily peritoneal dialysis at home in conjunction with his daily hemodialysis at the hospital. The surgeons wanted to make sure Matthew’s abdomen was large enough to accommodate adult size organs. Matthew had so much oxalate in his system they feared if he had a pediatric kidney translated, he would destroy it with all the chemical still in his system. They said he needed an adult size kidney that would be able to withstand that type of hit when it was transplanted. Once the peritoneal catheter was placed, I would be trained to administer peritoneal dialysis every night for several hours and gradually increase the amount of fluid so that it would help expand Matthew’s belly size. I was very upset when I first heard this plan. I was already stretched very thin, I was exhausted and overwhelmed. However, I realized I had no choice. It was what was needed.
We scheduled the surgery date for the catheter placement in Matthew’s abdomen. We stayed a few days in the hospital and then continued with our daily outpatient trips to the hospital for dialysis. I learned how to do perform the peritoneal dialysis through training I received during our hemo dialysis treatments. It was a lot to learn. We had the same exhausting schedule, up at 330AM, back at 2PM and home around 6PM. I would put Matthew to bed at 8PM and begin sterilizing everything to start 4 one hour “dwells” of peritoneal dialysis once Matthew was asleep. I would turn on his feeding pump and finally climb into bed next to him around midnight for 3 hours of sleep then start all over the next day.
As much as I tried, I often could not sleep on our drive to the hospital because Matthew ALWAYS got car sick. We had to make sure his catheters always stayed dry and clean. His team wanted me to continue nursing him as much as I could because it helped keep him calm during the treatments. If a baby is agitated or crying it causes the blood pressure to go up. If the blood pressure is up, they cannot clean the blood and have to stop dialysis. We were always finding ways to keep Matthew calm and happy.
Our nurses became our extended family. We spent more time with them then we did our own family. It didn’t matter if it was a holiday or birthday or special event. We had dialysis Monday through Saturday. There were no sick days or vacations or coming in late. We had days we would bring Molly and Patrick along with us. They loved coming to dialysis days because it was family time. The staff all spoiled them and they could pick anything out of the cafeteria to eat. We thought it was important they know what was happening with Matthew. I especially wanted Molly to understand the dialysis process and not be afraid of it. I knew deep down that there is a high likelihood that Molly will someday need dialysis and I wanted to prepare her for that so she wouldn’t be scared.
We also met other patients that we have formed life long bonds with. There is something powerful that connects patients together as well as their families with others who are going through a similar journey. It doesn’t matter what caused the organs to fail. The treatment is the same. Transplant. We lean on each other with each set back and hold on to each other with each possible “call”. We share our fears and hopes and even have the same warped sense of humor. Its how we deal when everyone else just doesn’t get it. There are days we talk all day and night and other days we sit in silence. These are the friendships that get you through the times you don’t think you can go one more step.
When Matthew was finally big enough to be listed for the transplant, we knew it would be a roller coaster of emotions on when and how we would get the call. We were told it could take days or weeks or maybe a month or two. Matthew was at the top of the list because he was so young and because he needed two organs.