After my enquiry as to why Kaden was being exposed to other unwell children, they moved us to our own room on another ward. Our length of stay will depend on how he gos on the antibiotics they’re administering.
Kaden has had a few very rough days. Yesterday morning he gave us a fright spiking a fever. We called the liver team & drove him into the hospital to be reviewed. His temp dropped back down to around 37 so they let us come home. He seemed to be back to his old self most of yesterday. This morning he was up at 5am with a headache. We took his temp again & he was sitting up around 38. We have kept him home from school again today so we can keep a close eye on him.
His rash is improving very slowly. As you can see from the pic below, he’s just not feeling his normal happy self!
Late last weekend, Kaden started to develop a rash. On Monday, Kaden went into PMH for his weekly check up. The rash was shown to both teams (oncology & liver) who both were not too worried about it. As the week went on, the rash started to look redder & nastier. We were pretty sure it was a result of the new drug Kaden has been on. We contacted oncology again & sent through photos & also took Kaden back into PMH for a review. The oncology team has advised us to stop given Kaden the new drug so his body can recover. Once his skin has settled down, they will look at starting him back up on it at a lower dose.
As you can see from the pics above, his skin is slowly improving.
During the week, we also received a call from “Make a wish”. They will be coming to meet Kaden in early March. Kaden hasn’t yet decided what he wants to do for his wish as he’s still very restricted in regards to public swimming, waterslides, travelling etc.
We have had a busy, fun couple of weeks. Last week, Liam received a Honour certificate at school. We were so happy & excited for him. This week Kaden received a very special Valentines gift from his gorgeous friend Jay-Lee.
On the weekend we spent some time with the Camp Quality crew. They do such an amazing job organising fun events. We went & saw “The little mermaid” in Kwinanna on Saturday. As part of the Camp Quality guests, the boys were able to meet the cast & take photos. On Sunday, we joined in with the other families at the Mandurah boating & fishing club where we went out on the boats, fished & the boys took part in gold search. At the end of the day, the boys were each given their own fishing rod 😃We all had such a fantastic weekend enjoying the activities 😃
Today we received a call from the gastro team. They are happy with Kaden’s liver numbers & now only wanting to see him fortnightly 😃
With the hot weather here in Perth & Kaden not being able to swim in public pools, (due to the risk of infection after the liver transplant), we have been spending our evenings at the beach 😃 We have been having a fantastic time & enjoying quality family time & getting outside in the fresh air.
The boys have both been going great at school! Kaden has done well keeling on top of his school work & Liam has been behaving amazingly in class 😃
We have also started Kaden on a new drug. It has been used in trials as an inhibitor. He’s been experiencing an upset stomach occasionally from it, but he also understands how important it is to continue taking it & has been doing a great job with little complaints about the horrible taste.
On nights like tonight where we are able to enjoy ourselves, we think of our donor, their family & the amazing gift they gave to Kaden. I haven’t mentioned the words ‘liver transplant’ or ‘organ donation’ much on previous posts, however I think it’s time. I myself have been listed as an organ donor since converting my licence from p’s to full licence. It’s not something I really ever spoke to anyone about, it was a question that was asked on a form at Vic Roads. After a little consideration I ticked the box thinking “my organs are no good to me when I’m gone & someone else can use them” & that was pretty much how I became listed as an organ donor. It wasn’t till our world was turned up side down, that I realised just how much being an organ donor would matter to us. It’s not always a subject that families want to talk about, I had mentioned how I felt & that I was listed, to Lee over the years. If it’s not a discussion that you have had with your family or something that you have thought about, please do so. Without our donors amazing family, Kaden would not have this second chance at life. If you would like some more information on becoming an organ donor, please visit www.donatelife.gov.au
Kaden went under today to have the stent removed. The procedure went really well. He was a bit cranky when he woke up but has since settled. We also decided it was time to remove his ng tube, so good to see his handsome face 😃 Kaden has also started to grow lots of hair 😃
Early this morning, Kaden went & had his regular blood test done before school. When he arrived home, he was so good & took all of his meds orally without any complaints 😃
Today was a huge day for all of us, as our boys returned to school! They both had a fantastic day making new friends & settling into their classes. We felt very emotional but super proud of them as they walked into school showing us how it’s done 😃 Seeing their smiling faces & hearing their excitement & joy as they told us all about their day was priceless. These are the moments that are truely so precious ❤️
We have slowly been getting around to catching up with friends. The boys have had a great time enjoying being kids again & playing with their friends. It really is so special to see them having fun, like like ive said before, it really is the simple things in life that are the best!
We have also been going for rides in the evenings as part of Kaden’s physio therapy. We had some fun last night taking sunset photos. We truly do live in a beautiful place!
We have also been encouraging Kaden to take all his meds orally instead of down the tube (much to his dislike) so that we can take it out.
Today was a pretty quiet one for us. Kaden woke up feeling pretty miserable so we cancelled our plans as he relaxed & recovered at home.
Tonight after dinner, he surprised us saying that he felt better & was up for a bike ride. He did so well. Upon arriving at the park, what did we see? A family playing cricket! Kaden being the social butterfly was off his bike & joining in the game. We have have met so many new families at our local park. It’s great that the boys are meeting more friends & are able to join in the fun 😃