Beautiful Riley has left us to rest. Please support Steph and Kane as they navigate this grief and try to find ways to heal and remember their perfect girl.
From Steph and Kane- It's with a very heavy heart that I need to let everyone know that Miss Riley has passed away this morning. She is at peace and there is no more suffering for her. She was such a brave wee girl and we are very proud to call her our daughter. We hope she enjoyed her very short life with us 💜🖤🩷
Our hearts go out to Steph and Kane at this devastating time. If you would like to support them with funeral cost please etc, please continue to use this page. Rest in love little Riley. Beautiful girl.
We were transferred back to Masterton hospital last week as a transition to home discharge. They have been amazing to us and we are allowed some home visits which had been so nice. Riley is still having some issues with fluid overloads but we are hopefully getting close to sorting that out and potentially getting discharged!
If everything goes well over the next couple nights then Riley is being transferred back to Masterton hospital so that we are closer to friends, family and support. Wellington will be in the background trying to get her parenteral nutrition prescription stable so that we can hope go home soon. We will have ongoing appointments with Wellington to monitor and help Riley be the best she can be with her digestive issues and we will also attend clinics here for her heart condition. Genetics haven't given us any answers so they are reaching out to colleagues in Australia and France to see if they have any suggestions. Very exciting news and we can't wait to see everyone again! Give us a moment to settle in there and then feel free to pop in for a visit 🏡😁🚑
Sorry there hasn't been a recent update but things have been very up and down with Riley's health. She is currently very unwell with a nasty uti and a fluid overload. There are suspicious that her bladder isn't functioning correctly so they may need to investigate that further. I haven't been coping too well, the exhaustion is horrible and it's hard to look after yourself. We are still in Wellington Hospital feeling quite isolated with no clear date of leaving. We have been told once she is medically stable we can go to Masterton Hospital to be closer to home and support but that's the golden question because they can't give us a timeframe.
Riley had to have another blood transfusion the other day and since then she has perked up alot. She's been sitting up and playing a little bit. Smiling at some of the nurses and doctors. She's even been given to all clear to have small amounts of puree and drink which she seems to be tolerating. Sounds like we might possibly be coming home in a couple of weeks if all goes well! 😊💜
Riley is recovering well from surgery and we sat her up for the first time yesterday. We have done some learing around looking after her new stoma and I have started my training to use and care for her central line. Hopefully we will be able to come home soon! Life will be very different for us but we will adapt and it will become our new normal. We still have alot of uncertainty to face and alot of learning to do but we will get there 💜🖤🩷
A message from Steph-
They may have discovered a diagnosis for Riley but we have to wait for the genetic test results to confirm it and see if there is anything else going on. It's not great news, it's something called visceral myopathy. It's rare and a lifelong condition. She will need a gastrostomy stomach vent, an ileostomy stoma and either full or partial iv nutrition for the rest of her life. She might be able to consume small amounts of food but they are unsure about that yet. Riley is having the surgery today to have a gastrostomy and an ileostomy done. Hopefully this will provide her with some relief and make her more comfortable. We have a heart clinic with doctors from Starship on Friday so hopefully we will get some answers in regards to her heart condition then too.
Sounds like we are going to be here for a few more weeks. We will be getting trained on how to do her TPN at home which is IV nutrition she receives through a central line in her chest. I can be trained while here but Kane will need to come down for a weeks training as the backup person. There is another medication they can possibly try for her digestive issues but that needs further investigation as it can interfere with heart rhythm and she already has the heart issue. Still no diagnosis and we are still waiting for test results so they know what's going on before they can treat her.
Hi everyone, just a little update on Riley. She’s is still in Wellington hospital needing ongoing care and treatment. Her digestive issues are still undiagnosed and they are waiting for many different test results to try and narrow it down, including genetic testing which has been sent overseas. She has also been diagnosed with a heart condition- cardiomyopathy. Steph and Kane will be tested for this too. They are very grateful for everyone’s ongoing support and kindness while they navigate this. Wee Riley is one tough cookie!!
UPDATE- Great news- Riley has been moved out of ICU today and to the surgical ward. She still needs close monitoring and her tummy issues are still undiagnosed and drs a still trying to figure out what is happening for her. It’s unlikely she will be returning home soon but at least she is out of ICU. Thanks everyone for their kind donations and messages of support.
