Brandons Story

Here’s a bit about my son Brandon
He was born on the 1st of June 2011,when he was born he wasn’t breathing, he didn’t actually take his first breath until twelve minutes resulting in him having severe cerebral palsy, he can’t do anything for himself, which includes, sitting up, walking etc, he has very limited control over his hands and arms, and is also non verbal, he can say the odd word like dad and yeah, but his main way of communication is through eye gazing, saying that he is very very intelligent and has a way of making it known exactly what he wants. He also has a heart condition called aortic stenosis, which means his main heart valve doesn’t work as it should, he had a operation on it at 9 week old, and will also need further surgery to replace his aorta at anytime, he has regular checkups to see if its still working sufficiently enough to keep him alive. He can’t eat so he has a gastro tube fitted into his stomach for this which he if fed through day and night.(another operation he had)
Brandon’s had major hip reconstructive surgery.
His hips aren’t developing properly as he doesn’t stand and weight bare…the op involved breaking his thigh bone ,breaking his hip bone, making a hip socket then re-set it all in a body cast with an A-Frame so he couldn’t close his legs. He was in hospital for 2 week and the body cast for 8- week. We will still had to carry him around the house in a body cast. That’s just one side, probably have to have both sides done, then have them done again once he has stopped growing…so technically he’s got to have the same op 4 times….(update 19-6-20)
We have been to an appointment with Brandon’s team of Dr’s and surgeons, he has got to have a major operation on his spine, this will hopefully reduce his spasticity and make life that little bit more manageable and less painful for him….there is a chance it could go wrong and he would lose what little head and body control he has….(29/5/21) Brandon’s had the operation and it was a success….
Most recently Brandon’s had further surgery on his stomach in October 2021 to stop him being violently sick on a daily basis, he was throwing up day and night, this surgery has so far been a success and we no longer have to take a sick bowl everywhere we go…in August Brandon got the dreaded Covid and had a massive seizure which again he ended up in hospital…..they sent him home a few days later only for him to have another big seizure and being re admitted back to hospital…again he was sent home a day or so later but he continues to have mild seizures every other day… we are waiting for him to be prescribed some medication to ease these fits….Well Christmas day 2021 was quite possibly the worst Christmas of our lives….8am Christmas morning Brandon was being rushed to hospital with internal bleeding from the stomach operation he had in October, he spent the next two days being investigated and observed… luckily the bleeding stopped of its own accord so he didn’t need further surgery, this has however left his blood count and immune system very low so he’s not been 100% well since then.. he’s on yet more meds at the moment for his bloods and we are currently waiting to see his neurologist for answers and where we go next….further updates in September 2022 Brandon was admitted to hospital with severe pneumonia, where he spent several weeks with a chest drain in, the Dr’s drained 3 litres of fluid off his lungs, then in December 2022 he was admitted again with an infection in his stomach, this led to severe diarrhoea and dehydration, the second Christmas spent in hospital in a row, as of May 2023 Brandon has been back to hospital several times with his bowels, he’s either constipated or has severe¬†diarrhoea, Dr’s can’t find the right balance of medication….He’s also developed epilepsy which has seen him admitted to hospital on many occasions…..This boy and my family certainly go through it….
He regularly attends hospitals for progress reports and checkups…in his first 9 week of life he was transferred to 3 different hospitals for various tests and life saving procedures. In his 11 years of life he has been through so so much, he has nearly always got a smile on his face and is such a happy clever little fella, I call him my little soldier…….