Rory’s lifesaving kidney transplant

Many of you will be aware of our Rory's tough journey to date, but please bear with us for those who aren't...

March 12th 2021 was the scariest day of our lives... Rory just wasn’t himself. Although the Margaret River Hospital told us his vitals were “normal” we insisted he was unwell, so we were sent to Bunbury hospital for a blood test.

Once we arrived, we were left to wait for 3 hours – during that time Rory went downhill fast. After what felt like an eternity waiting with our sick baby, we were called in for his blood test. The next thing we knew an entire team had raced in, surrounded Rory and were rushing him to the resuscitation unit. It’s all a blur now but we were told Rory’s body was shutting down and we needed to fly to Perth immediately and hope that he will make it.

Rory and I were on a plane immediately to Perth Children’s Hospital, thankfully he was able to hold on. This was followed by 3 days in the ICU and weeks on the ward at PCH. Our poor baby was diagnosed with Stage 5 Chronic Kidney Disease and End stage Renal Failure… it’s still terrifying to think how close we came to losing him. He had a few setbacks during the stay in hospital, but finally he was stable enough to take home.

Fast forward to today, this is what life looks like for Rory and our family… most days start with vomit, poor Rory suffers with terrible nausea and it’s not unusual for the first thing I hear in the morning to be him dry-retching or throwing up from his cot (still in our room, for obvious reasons). This will be the first of many times I am racing over to turn him on his side and catch his spew that day.

Each day is an endless cycle of constant clean-up of vomit, milk bottles, plugging Rory into his feeding tube through his stomach when he can’t stomach his bottle, The Wiggles (despite being so sick, he’s our musical baby!), playing with his brothers, medications, medications, medications, more tube feeding, showers, washing, more Wiggles, attempting to get Rory to taste food (it hasn’t happened yet but I’m still hopeful!), more medications, snuggles, laughter, crying, blood tests, weekly visits with our favourite nurses, more milk, more spew, feeding tubes, The Wiggles. And so on…

The next chapter will see our beautiful boy finally receive his first, lifesaving (and what could possibly be one of many) kidney transplant. This is currently scheduled for March, only a few months away. And whilst this is of course such a relief, it will be a difficult time for our family for many reasons. Of course the doctors assure us it will go well, and we know it’s the best thing for our Rory, it’s still a major surgery, and with such a sick and vulnerable baby, of course we are a little scared. We will be 360km away from our home and support network for 3 months at least, partially home-schooling Tom and Billy while Mum and Rory are recovering from surgery with Dad needing to look after us all. Because Andy isn’t the one donating to Rory, he is unable to get paid for the full amount of time he is off work to look after us all. He will be caring for Rory after major surgery, staying with him in ICU. Caring for Chloe once she gets out of hospital and looking after Tom and Billy so that Chloe is able to rest. Tom and Billy will be so lucky to have schooling provided at the Ronald McDonald house for a couple of hours a day but the rest of their time will need to be occupied. It’s going to be a challenge for us all! In terms of accommodation, we’re so lucky to have an apartment provided by the Ronald McDonald House… but this is literally a single room apartment, which will at times be housing all 5 of us! This is okay for a few nights from time to time, but it will certainly be a challenge when we’re talking about weeks or months, especially for the big boys…

Those of you who know us well will know we aren't the type to seek handouts. We live a humble little life, we make do, we get by... and we know there's many others who have things much harder than ourselves.

That said, it's been brought to our attention by our loved ones that sometimes in life you need to ask for help... it takes a village they say.

So after much deliberation and reluctance, we've decided to start this go-fund-me page to raise some money to help us through the next few challenging months.

This could help make things a little easier by taking some of the financial stress off of Andy, knowing that he can take the time of to care for us all once his paid leave is used. Being able to take the big kids for activities and supplies to keep them occupied, all the while knowing our mortgage is still being paid back home. Helping us to shop for supplies that we won’t be able to access far from home.

We would truly appreciate any amount, great or small, and of course expect none.

We will be sure to keep you all posted along the way as Rory and our family enter this next chapter.

Lots of love, Chloë, Andy, Tom, Billy and of course our little Snory