Today on Bristol Mum is a guest post written by Luke Compton, dad to a little boy named Kaleb.
Luke is running to raise money for Ronald McDonald House, Bristol, an independent charity which provides Home from Home accommodation, free of charge, to the families of critically ill children receiving care at the Bristol Royal Hospital for Children.
Below, Luke shares his sad story.
On Tuesday 12th November 2013 at 18:05, our world changed for ever.
Kaleb Jason Peter Compton was born at Exeter’s Centre for Women Health, weighting 4lb 9oz in an amazing 6 minutes, unsuspected breach labour.
Myself and my partner, Alana, spent the first 6 weeks of parental life in the Neonatal Unit with 2 weeks in intensive care. Kaleb was so small, he was being helped to breathe, being kept warm & in the environment of the womb as he was 13 days early.
After the shock of the labour, we were allowed to visit Kaleb, currently unnamed & reality started to hit…. That was our baby, little did we ever know the journey he was about to take us on. We agreed and decided to call him Kaleb, with a ‘K’ but from the moment he was born I have always called him ‘Scrat’ which has stuck and it’s become a Daddy/Son bond.
We finally got Kaleb home for the 1st time on the 23rd December 2013, we never told anybody and we hid in the house, just the three of us and enjoyed every moment we could and then on Christmas morning we surprised the family with the best Christmas present any of us could have wished for…. Kaleb finally home.
Kaleb struggled to put on weight over the Christmas and New Year period and it became a constant struggle to get him to take milk and keep it down, in the end at beginning of Feb 2014, he had a NG tube placed so the pressure was lifted from us and he didn’t have to be fed through his mouth anymore and instead right down the tube in his nose.
Kaleb was diagnosed with a rare chromosome disorder on 1st April 2014 called XQ28 duplication.This is very rare in the UK and across the world and there isn’t much information. We were guided to the ‘Unique’ website and we have since gained some knowledge of what we have to expect but mainly we have to be guided by Kaleb himself.
The chromosome disorder’s main problems are:
• Failure to thrive, feeding difficulties
• Respiratory Difficulties
• Developmental Delay
• Life Limiting Condition
So you can slowly start to see the challenges ahead of us as individuals, a family & also parents to a child that isn’t going to do everything by the book.
We found out in April 2014 that Kaleb also has pulmonary hypertension in his heart, which is when a vein in your heart starts to narrow, in Kaleb’s case he has 2 veins, his top right and top left.
Between June & Sept we spend our time mainly on the M5 going to and from Exeter and Bristol with illnesses such as Adenovirus, Rhinovirus and Bacterial Pneumonia.
He finally came home in September but with permanent oxygen to help with his breathing so his oxygen bottles are always close by.
Between all the hospital stays, Kaleb had many outpatient appointments so you can see the world we have been thrown into isn’t easy & takes everything out of you, whether that’s mentally, physically or even emotionally.
Kaleb had spent most of life in & out of either Bramble Children’s Ward at RD&E or Bristol Children’s Hospital. The time spent at home Kaleb is a laid back, charming, happy, cheeky chap who loves to play with Ozzy the Jack Russell, he also loves music, lights & bells… Pretty much anything that makes a noise or lights up.
Kaleb is also very fond of his Gromit teddy & takes him everywhere he goes. He is a true inspiration, he doesn’t let anything bother him, he just accepts what has to be done & some how just gets on with his little life.
The world he lives in is such a happy place and a lesson we could all learn from. The fact he has many tubes or wires doesn’t make him any different to an other child, we all still love him dearly, if not more.
Back to Bristol again in November for a few days for his 1st operation which was a heart catheter to look in-depth at his heart & the pressure of the narrowed veins.
Over the winter months we have found it safer to try and keep Kaleb indoors and in the warm as much as possible because any little cold could and has meant weeks in hospital because his body can’t cope with it.
In February 2015 we returned to Bristol for a CT scan of his lungs which ended up becoming 4 weeks on the intensive care unit (PICU) due to a few operations (lung biopsy and a gastrostomy) and a couple of weeks on Ward 32 before his discharge.
While in Bristol Kaleb become so poorly it became life threatening and every second, minute, hour became so important. The amount of stress, worry and pain we felt as parents, who couldn’t do anything but keep a bedside vigil, keep the faith and want our little boy to continue his fight…, which he did and continues to do.
As much as Kaleb is the most important thing in the world to us as parents, all of a sudden we found ourselves in a City we didn’t know overly well apart from the hospital, a child that was very poorly & the fact home was about 120 miles away, what do you do?!
Well, the answer was given to us in the form of Ronald McDonald House.
The Ronald McDonald House Bristol helps give parents a room to stay in while their child is in hospital, it’s totally free, without Ronald McDonald we would have had to find a hotel, B&B or even go home.
Coping with everything that has happened and continues to happen is the hardest thing I’ve ever had to deal with and I hope nobody ever has to go through half of what we have. Mentally, physically and emotionally it takes everything out of you and is draining & exhausting. The roller coaster of worry just doesn’t go away as much as you try to hide it.
About Ronald McDonald House:
Ronald McDonald House, Bristol is an independent charity which provides Home from Home accommodation, free of charge, to the families of critically ill children receiving care at the Bristol Royal Hospital for Children.
When a child is very ill, they may need to travel away from home to receive the treatment that they require. Having a child who requires medical care away from home can be a very stressful experience; imagine being in a strange city, miles from home, with nowhere to sleep and without the support of your family and loved ones around you. Their aim is to keep families together during what is probably one of the most stressful times of their lives.
Over the eight weeks we stayed in Ronald McDonald, we met families in the same situation as ourselves from all over the South West & Wales, everybody helped support each other through good, bad & difficult times.
Everybody was in the same boat but maybe a few steps ahead or a few behind but everybody had the same love for their poorly child & that is what the spirit of Ronald McDonald and also PICU is about.
I’ve decided to run 4 half marathons in 6 months to support Ronald McDonald House in Bristol, all the money I raise will go to helping the house. I have already run the Plymouth Half Marathon that was on the 19th April and I finished it in 1 Hour 57 Minutes, then I completed Torbay Half on 28th June in an hour 41 minutes and 46 seconds next up for me is Bristol Half Marathon on 13th September and finally Exeter’s Great West Run on 18th October.
In between the half marathons I will be completing 10k races around the South West to raise awareness for Ronald McDonald house & also to keep my training up, recently I did the Bideford 10k and finished that in 45 Minutes and 53 Seconds.
I’ve always been keen on sport, I played football since I was little, (supporting Everton and Exeter City). I only stopped playing a few years ago, I love playing squash and I have always been a keen runner but always for fun so after finding out about Ronald McDonald House Bristol and being treated so well at there I decided to give something back & running was the answer.
I’ve used running as my escape from everything going on and it also gives me my own head space so I can deal with everything that is being thrown at us…. Trying to hold down a full-time job doing 45 hours a week, training as much as possible, worrying about Kaleb and then also driving to whichever hospital he maybe in or attending as many appointments weather that is Exeter or Bristol and all the normal things life throws at us in a general day-to-day basics.
I’ve been asked many times if I’m mad for running all these Half Marathons and my answer is simple ‘I’m not mad, I’m the Dad of a critically ill child.’ We have sat and watched our little boy go through so much over his little life to date, I have found so much drive & determination to make him proud and to realise we can all do something special if we put our minds to it.
I know times are hard but any donation is massive, it doesn’t matter if it’s a few pounds or £5 or even £10, whatever you can give is all appreciated. I want to raise as much money as possible for a charity that I feel doesn’t get the credit it deserves.
I’m not raising money for myself or not even for Kaleb, I’m doing it for all parents who have used Ronald McDonald House Bristol & sadly all the parents that will need Ronald McDonald in the future.
Without this wonderful charity, parents will have an extra worry on their shoulders at the worse time possible, Ronald McDonald House Bristol relieves the stress and give you the extra time to spend with your child.
Raising money for Ronald McDonald House Bristol is so important to myself and also the charity but I’m so passionate about raising awareness for the charity and getting their name known.
We aren’t looking for pity or for anybody to feel sorry for us, we are so proud of Kaleb and we firmly feel we have been given him for a reason.
I just want to help as many other families as possible who are going through the toughest time in their lives.
‘They say every little boys first hero is his Daddy but I can honestly say this Daddy’s hero is his little boy!’
* * *
Sadly, since Luke wrote this blog post, Kaleb passed away in Exeter Hospital.
Please donate to Luke’s Just Giving page, and help other families who are going through a similar situation to what Luke and Alana went through. Visit www.justgiving.com/LComptonRMHBristol
You can also donate to Luke’s Just Giving page from your mobile phone. Simply text RMHB89 (plus the amount you wish to donate) to 70070.