Ethans Loving Fund

From the mother of the beautiful late Ethan:

Hey all, I created this page so I can share our story with you about Ethan. Even though this part might be sad and full on we also wanted to share the most memorable and happy moments with you guys while we can. We just want to thank all our family and friends for everything that you guys have done for us over the past year. We really appreciate everything that you all have done for us.
Ethan went into Chronic Renal failure on the 8th February 2019. Ethan was also born with Prader-Willi Syndrome, if you don’t know what that is please do some research on it, you will then realise that Ethan isn’t a normal boy(he has extensive needs). We got rushed via an RACQ jet to the Brisbane airport where an ambulance was waiting for us and rushed us to Lady Celento Children’s hospital. When we got to the hospital they rushed us up to PICU (paediatric ICU) the whole team was there waiting for us. His renal team, anesthetiser, the icu team, social worker and the rest. They explained to me what was happening all while they were working on him. They sedated And incubated him and this was when we first met the green machine (haemodiaylsis machine). You can just imagine my emotions at this stage. I was there by myself until Owen turned up early that morning and then Ethans dad and step mum turned up later that night. They put his first vas cath into his neck and they had him on his green machine and he was on it for three days straight. He hated that vas CATH in his neck and he was forever trying to pull it out. After he was stable enough we tried to to take him down to the renal unit where they do all the haemodiaylsis with the other renal patients, but 2 hours in he cracked and they had to disconnect him very quickly. He lost a whole circuit of blood and he had to receive a blood transfusion the very next day. That’s when they decided that it would be safer for him to have a peritoneal dialysis tube put in. Which meant another surgery. He had the PD and a Portacath put In, between this time they found out that Ethan had a blood clot in the left side of his heart. Which meant more injections to add to his huge list of medications they started him on. He had lines and wires in everywhere to monitor him. Back up to PICU where he stayed for just over 2 months. We finally got home after his first long stint in hospital. Settled In doing home dialysis 4 times a day. We were home for just a little over a month when he decided to cut his tube with a pair of scissors. We then got rushed back to Brisbane where they sedated and incubated him for a week, he was back on the green machine for the week before they decided to put a new tube back in(the surgeons didn’t want to). We were there for just over a month this time. Finally got home and was home over a month and he cut his tube again. This 2nd time was very serious, the surgeons said that they wouldn’t put another tube in. We nearly lost him this time, he would’ve been gone within 2 days). He had 8cms hanging out of his tummy and the renal team were able to selvage this tube (thank god). This was when we found out that Ethan wasn’t able to get a kidney at all. Those words that came out of the renal team broke me that day. Both Owen and I broke down, we didn’t know what to think or say. Ethan is now end of life. We had a lot of meetings over the next couple of days with social workers, palliative care team and the rest to put things in to place before we returned home for the last time(no more hospitals for our boy). It has been a very full on and hard year for all of us. Please keep Ethan In your thoughts and we hope we can keep him around as long as possible.

So now please sit back and relax and check out all our happy memories.