As apart of Kaden’s rehab we have been trying to think of different ways for him to exercise. Yesterday after noon we took him to a friends house for a swim. Being mum I was nervous, but Kaden was just like the little fish he always was, even diving down to pick up a sinky toy 😃
Today we had a few things to get done so didn’t get a chance for another swim but we did get to enjoy an ice cream 😃
Over the last few days, we have been working on strengthening Kaden’s legs & encouraging him to walk as straight as possible. Kaden has been doing a great job & even played football with Liam. Kaden has also been amazing with eating which means we have been able to reduce his feed amounts 😃 Our aim is to get Kaden’s eating as normal as possible & to take his meds orally, so that we can remove his tube alltogether 👍🏻
On Tuesday, we received confirmation from Kaden’s oncology & liver team that they were happy to send us home to Perth! Yesterday was a busy morning packing, cleaning & making our way to the airport. We were all so excited to be finally going home after a long 5 months in Sydney. On our arrival at the airport, we were greeted by our amazing family, who were just as happy as us that we were finally home 😃 When we got home, the boys got a special suprise when they saw the Christmas lights that their uncles & aunties organised for them 🎄
Although our stay in Sydney was a long one, the doctors, nurses, social worker, physiologist, surgeons, play therapist, physio & occupational therapist were all absolutely amazing. They are an extremely special team & we will be forever grateful for all that they have done for us.
Today we received the great news that the docs were happy to discharge Kaden from the hospital 😀 Over the last few days, Kaden has been more interested in eating again & is slowly gaining more energy as his neutrophils grow.
We will be back in on Tuesday for liver clinic & bloods at the oncology clinic.
Today we have seen an improvement in Kaden’s numbers. His neutrophils are .1 & his liver numbers have also improved 👍🏻 Kaden still had a few fevers overnight. We hope that these fevers have now stopped & that Kaden is on the road to recovery 😃
Liam had his last day of Kinder today. He’s excited to be going into preprimary next year. He received a very special hand made book about spiders (he’s been obsessed about them) from his teacher. 😃
Kaden has had a few rough nights. On Sunday night he had bouts of pain & at 3am this morning developed a fever of 39 & was vomiting. Our son is doing it so tough at the moment, what I wouldn’t give to have him 100% healthy & getting excited about Santa coming, like all the other kids his age.
Over the last 24hrs, Kaden has unfortunately been having temperatures & feeling pretty rotten. He has slept for the majority of today as he didn’t get much sleep last night due to pain & obs requirements. He still doesn’t have any immune system but I hope that tomorrow we’ll start to see an improvement in his numbers & general well being 😃.
Kaden woke up later on this arvo & was excited to see the Pokemon toy that Lee found in the volunteer shop. He was also feeling up to having a chat to his friend Kit 😃
Kaden’s platelet levels are still lower then what the doctors would like, so he received his 3rd platelet transfusion today. He still has not built any neutrophils yet so the doctors would not discharge him, however they did give Kaden a gate pass 😃
Around this time of year, there are alot of families that don’t feel like celebrating Christmas for all sorts of different reasons. However, it’s amazing how many people go all out to make Christmas as special as they can for the children who are in hospital. Yesterday Santa made a special visit to the children in the oncology ward & gave each of them a special present. 😃 This morning, we heard the roar of a few Harley Davison bikes out the front of the apartment. At first it sound like just a few, but as the minutes passed there were more & more of them. To our surprise, when we walked out the front of the hospital, it was surrounded by more then 250 bikes! It was an amazing site, there were riders dressed up as Santa’s & his helpers, toys stacked up high on the back of trailers & lots of bikes covered in tinsel! The bikes were apart of the “Bikers Australia” club who make a special drive down to the hospital to deliver toys for all the kids. I spoke to one of the organisers who informed me they had been doing it for 35 years!
The nurses have been busy taking Kaden’s blood on a daily basis. Testing shows that he’s still neutropenic. Due to his previous history of infection (abscess etc), the doctors have decided that until his counts start to improve they will not discharge him. From memory, it normally takes from around a week for them to start climbing again. However he also has the extra immunosuppressants on board so this may take a while longer. Today they did let Kaden out on a day pass, which has been a nice break from the hospital. We have been trying to encourage him to start eating again, he does tell us he wants to, but his tongue is still a bit sore 😢. Due to the lack of food, we have been trying to run Kaden’s feed continually at a super low rate so that he does not loose too much weight.
Kaden has an ultra sound booked for Monday to check the abscess & then Vincristine (chemo drug) on Tuesday.