This is Riley’s story told by Mum, Danae.
Leading up to dialysis is a very daunting and anxious time…the not knowing what to expect, whether it will help improve our child’s well-being, how hard will it be to operate, the impact it will have on our daily lives…
My son Riley was born with mild renal failure and we knew from day two that he would eventually require dialysis and a kidney transplant…we just didn’t know when.
I remember seeing his Nephrologist in the Renal Clinic at the hospital and at the end of every meeting I would ask the $64 million question – “how much longer ’til Riley will need to start Peritoneal Dialysis (PD) and have a transplant?” He would always answer me with “still a way to go – perhaps in another year or so…”
Well we weren’t so lucky. We didn’t experience the gradual decline of kidney disease; Riley went from a Creatinine level of around 260 to 500. Then Riley got a fairly bad UTI and a cold which knocked him off his feet.
Within one week of being unwell we went from “dialysis probably next year” to “dialysis next week”. Riley was unable to keep anything down, even fluids; his whole kidney system had gone into shut down mode. I remember the Surgical Registrar telling us on a Sunday night that Riley would have to have the Tenckhoff Catheter put in the next day. They usually like to leave the catheter in situ for at least a month before they use it to allow the swelling and stitches settle down and heal, but we needed to start Peritoneal Dialysis and use the catheter 2-3 days later.
The nursing staff on the ward gave us all the assistance and training we needed to know how to prepare and care for the Tenckhoff Catheter site using sterile methods. I believe the procedure is a lot easier now compared to how it was in 2003/4.
Before starting dialysis Riley was always extremely tired and ate very little. He had little to no energy compared to other children his age. Unfortunately, the only food he liked to eat at that stage was custard and ice-cream – both were banned by our Renal Dietician but it was the only thing he could keep down and actually wanted to eat. He was fed via a Nasogastric Tube with Kindergen – a specific formula for children suffering Renal Failure.
I was very anxious about Riley starting Peritoneal Dialysis…the unknown. However, once he was on PD, I was wishing that we had started sooner. He had a bit more energy and a slight increase in appetite. There are, however, some down-sides to Peritoneal Dialysis. When Riley did PD, the procedure took about 10 hours so we would always hook him up overnight. We started dialysing 3 times a week but soon had to increase that to 5, sometimes 6, times a week to increase his well-being. That did restrict us in our daily routine – we had to always be home by dinner time to start the PD preparations…
We were very lucky and fortunate that Riley never contracted Peritonitis or any other problems associated with the catheter. We were extremely diligent about caring for the site and adhering to sterile procedures.
The best advice I can pass on to other families is to do stacks of research and ask your Renal Nurse to put you in touch with another parent who would be willing to answer questions. I was lucky enough to have this opportunity…it was a tremendous help.
Another thing you should do is to contact Energex or your electricity supplier for a rebate. When Riley was on PD we were entitled to a small rebate off our electricity bill due to using power for a life saving medical device. You can also register with them to be a priority so if power goes out in your home they make your house a priority for getting the power fixed. The power went out for us on our second night at home doing PD – the first bag had just gone into his abdomen and boom the power was gone so we had to drive Riley to the hospital with a very full belly – he was not comfortable at all…just one of the things you learn.
We did PD for about 9 months in total whilst a donor match tests for a transplant were being done on Riley’s Granddad. We were lucky enough for Granddad to be a near perfect match. Granddad went through a lot of invasive tests and he felt like a “pincushion” but he never complained once. Words cannot express the gratitude that both my husband and I feel about this incredible gift of life he has given Riley; he is a hero to us. Riley has had his transplant for 7½ years now.
The first few days post-transplant were great – no problem with the pain and for the first time in his life he was actually eating food. Of course he didn’t know how to chew or swallow solid food so we had to get help from the Occupational Therapists in the hospital with feeding therapy. It brought our whole family tremendous joy to see our son eating food finally at the age of 3½. Then on about day 5 he began to have reactions with the medications and suffered terrible diarrhoea. It took a bit of juggling but eventually a happy medium was found. This is a very common occurrence as the medications are so strong for their little bodies.
It didn’t take us very long to believe in the statement that “A Kidney Transplant is not a cure, it’s a treatment”. You are literally swapping one set of problems for another, but I would never go backwards.
So far, 7½ years on, the kidney is doing great; sure we have had our problems along the way and some of which were extremely serious but it is still going well and, most importantly, Riley is doing great. The biggest factor we have had to juggle with is the immunosuppression side of things. The anti-rejection drugs leave him with no or little immune system to fight off viruses and/or infections.
It’s hard to find a happy balance in everyday life too when you are taking care of a child with chronic medical issues. We constantly had to remind ourselves that our younger daughter also needs a lot of attention and time as do we as parents – you can’t look after someone else if you are not taking care of yourself. We had to learn that as parents we needed to ask questions, stand up to doctors sometimes and not accept everything they say as gospel. We are our son’s advocate and over time with increased knowledge we have reached a point where we can communicate with medical staff without being intimidated.
CKSN would like to sincerely thank Mum Danae and Riley 10 for sharing their kidney journey.