Earlier this year we reported that Darian, mum to Wesley, who was awaiting a liver transplant, had raised an amazing £1600 on Big Yellow Friday We’re delighted to share that three-year-old Wesley received his new liver in May. Here Darian tells us about the difference this has made.
In terms of the transplant process, I think overall we were quite lucky. We waited a total of seven months but in that time, although we had plenty of hospital checks and worked closely with his dieticians to ensure we were increasing his nutrition as much as we could, Wesley was generally well and didn’t need any hospital admissions.
We were fortunate not to have any false alarms, we got the call at 2am one morning and by 5pm that evening he was prepped and waiting to go to surgery. We spent a total of 16 days in the hospital and Wesley’s health completely flipped! I didn’t expect it to happen so quickly. So many symptoms he was dealing with pre-transplant such as itching and lack of appetite just disappeared as soon as he woke up!
The biggest change has been his eating. By the time transplant came around, he was fully NG supported, and we were lucky if he would eat a cracker every two to three days. His weight was down to 13kg after transplant and today it’s 15.4kg! We’ve been seeing the dietician weekly and today his NG support is down to 150ml daily, as opposed to a litre pre-transplant, and the aim is to remove it very soon.
Overall, his energy levels are through the roof, and he has so much more capacity for playing and engaging with toys and learning.
The things we enjoy most now are just the little things! Sitting and eating meals together, going out for walks with our two dogs and not having to have my phone constantly on loud in case I miss any calls!
We did have a short stay in Birmingham recently as he had a little bought of rejection and CMV but that was nothing we didn’t expect and nothing he hasn’t handled either! He responded well to treatment and has continued to be his charming and lively little self.
Knowing that his liver is working well and he has this opportunity to grow means so much to us. Every day we just thank the selfless donor who has given him this gift of life. It’s been such a blessing and without them our little boy wouldn’t be doing what he’s doing today or have the future opportunities he has now. The thought of transplant was so scary and so many times I wished and wished he didn’t have to go through it but looking back and seeing him today, it’s been the best thing to happen to us!
