Luke’s Story

7th November 2023 posted in Hunters News

Thursday 12th December 2019 started like any other day, we awoke and started getting the boys ready for school. Luke kept complaining that his leg was sore but as he had done PE the day before we assumed it was just a knock he had picked up. I set off for work whilst my wife Christine took the boys to school. As they arrived at school Christine decided Luke didn’t look too well and took him home. Que a day spent on the sofa being under the weather and having a few rounds of sickness.

I returned home from work and immediately left again to go to Harry’s School Christmas play at Holy Trinity Church. Just as it ended I received a call from Christine saying that Luke had taken a turn for the worse that 111 had been called and they were sending an ambulance.

I set about getting his brother into the shower and ready for bed. Not easy with an excited 10 year old running on adrenalin from his lead role in the school play! Eventually he went to bed, not long after I had another call from Christine, I was expecting a ‘we’ll be home soon’ conversation, how mistaken!

Christine said Airedale are sending us to Sheffield you better come.... Please pack a bag for us. A couple of mad minutes followed trying to pack a bag and ringing grandparents to come to look after Harry. Needless to say once the cavalry had arrived I set off to Airedale.

On arrival I went into A and E to Luke’s cubical, I was told Luke had suspected meningitis and we were awaiting the Embrace team to arrive to transfer him to Sheffield, the Embrace team are basically a mobile Intensive Care Unit, We got to cuddle him and tell him we loved him very much before he was put into an induced coma not knowing if we would get the chance to say it to him again. Embrace arrived they helped to get Luke ready and before I knew it I was following the ambulance at a distance to Sheffield.

Upon our arrival at Sheffield we went straight to their Intensive Care Unit, where Luke was hooked up to many machines and drugs to help him in his fight for life.

Whilst we were in ICU Luke’s condition was confirmed, Meningococcal Meningitis Scepticemia (type Y) which normally affects only adults. It is Meningitis with the added complication of sepsis. By this time, Luke was also on a dialysis machine in order to keep his liver and kidneys functioning and to try and cool his blood to try to get his body temperature under control. Slowly the drugs started to work and fight the disease, he came of his ventilator after 4 days which felt like a massive step. However we were still waiting for what the doctor’s term demarcation, which was basically to see what areas of skin and limbs had not survived and what if any may return.

Around this time we were moved out of ICU and onto the High Dependency Unit. To start with our time here was mainly a waiting game for the demarcation to finish.

Unfortunately for Luke, the demarcation did not change or improve, all 4 of his limbs were completely affected, and wasn’t too long before a conversation had to be had about him losing his hands. As you can imagine not a good day. To start with Luke did not take this news well but over the following days and lots of conversations he came around the fact that his hands were no longer functional and Luke being Luke just as he was going into surgery said......

‘Thank you my wonderful Hands, you served me well’

After his hand amputations we were still hopeful for his legs, his left foot even started to return to a normal colour. But it wasn’t to be and soon we were having another conversation about him losing his right foot and leg to just below the knee and then after this his left leg and foot as well. As this leg was in a worse condition, the surgeons said they would have to amputate it through the knee joint. To enable Luke to get around without any prosthetic limbs on we had to make the decision of shortening his right leg to match.

After the removal of limbs Luke has undertaken many more surgeries to cover what had survived with a covering of skin. 50% of his body had no skin and so the remaining 50% has had to be donor. To get him healed and to minimise infection he has been going to theatre Monday, Wednesday and Friday, to have skin grafts and dressing changes. In between these surgeries there was physio, physiology and lots and lots of doctors and consultants prodding poking and checking. Luke had 23 surgeries over a 10 week period.

When Luke’s surgeries had finished we had the difficult task of Luke learning to cope without his lower legs and arms, we had the difficulty of this too along with learning how to best look after Luke’s skin, another steep and difficult learning curve. Luke seemed to take it all in his now slightly smaller stride!! He had his moments but for most of the time he just got stuck into whatever task he needed from tentatively trying to balance, learning to use cutlery, exercising to strengthen his core he mastered it all with a smile. Our little boy was returning. As Luke’s recovery progressed we were moved out of ICU / HDU and went to ward 2, on ward 2 is a speciality burns unit, however due to the number and fragility of Luke’s skin grafts this was the best place for his ongoing care.

All the staff at Sheffield Children’s hospital were superb the care Luke received was second to none. Whilst on ward 2 this care helped Luke to gain in strength and confidence to overcome more and more obstacles. Unfortunately just as Luke was making progress covid hit…..

At this point the resources in the hospital started to shift to deal with this unprecedented pandemic. For us it was even harder as I had returned home to take delivery of some medical equipment for Luke’s eventual discharge, the hospital went into lockdown meaning I could not return. Leaving Christine in the hospital to look after Luke.

Due to covid the number of staff on the ward, the physio’s etc etc plummeted dramatically, any patient’s that could be discharged were the whole ward turned into a ghost ship. Christine became Luke’s sole carer! The staff were not allowed into the room and Christine and Luke were not allowed out. This was an extremely tough time for Christine. The reason Luke was not discharged is because he had an open wound on his right arm that was not closing, the surgeons were contemplating further surgery to shorten his arm. Our prosthetics consultant wanted to keep as much length as possible as this would help Luke later in life to have better functioning prosthetic arms. Whilst we waited for this to heal Luke got an infection in one of his lines that they were using to administer medicines. This occurred on Christine’s 40th birthday so along with being alone in hospital, Luke was also back to being quite ill.  In the end the line was removed and Luke had to take all his medicines orally. Some of these medicines were not nice and generally we had to bribe Luke to take them with either chocolate or strawberry yoghurt.

As Christine and Luke were in hospital I was sat at home feeling like a spare part there was nothing I could do to help. As I had thought that I would be returning to hospital we had decided that it would be best not to tell Harry I had come home. Another tough decision but Harry had spent the last four months being looked after by both sets of grandparents. We thought it would be better for Harry to stay in this during this routine rather than interrupt it. Just as I thought it would be great for Harry to return to the family home I fell ill. I contacted our GP and after a phone consultation she was convinced I was showing several symptoms of covid. Meaning that although Harry was just at the other side of Skipton I had to isolate for twenty one days. We did tell Harry I was back and that I had covid. He was initially upset but understood he needed to stay where he was in order for him and the family to stay safe.

I did my quarantine and was eventually able to pick Harry up and bring him back to the family home. Meanwhile Christine and Luke were still residing in Sheffield Children’s. This was really taking its toll on Christine both physically and mentally. Harry and I found it tough not being able to visit and it was mentally difficult trying to keep some sort of family going whilst being physically separated and not being able to help.

Luckily for Luke and us, his arm started to heal the hospital started and 19 weeks and a day after being admitted on the 24th April 2020 Luke was discharged!

A relief in some ways as we could be a family again, however it came with a lot of worry and uncertainty as we would be leaving what was a safe place with experts around to help should the need arise. At this point the whole country was in lockdown amid the uncertainty of the covid pandemic. This was a bit of a double edged sword for us, on the one hand resources were squeezed as services were either cut or running with fewer staff meaning we had less support, which was not ideal for us. However it did mean that although we were isolating we had time together and didn’t have to worry about people wanting to visit us! It gave us the time to return to being a family.

Over the coming months we had started to sort many things out for Luke, However it became apparent that our house did not adapt well to Luke’s needs. We made the heart breaking decision to sell the house that we had spent the last 8 years extending and improving. The difficult thing was it was not finished, so with the help of various trades, plastering, joinery, landscaping, decorating and carpeting was carried out. The house went on the market and sold.

We found and moved into a bungalow which is more suitable for Luke’s needs. In order to achieve this move and as we are yet uncertain as to whether Christine and I could return to full time work, a lot of the money raised went to on the purchase of this house to enable us to be mortgage free. Securing the house for Luke’s future.

Whilst all this was going on Luke went from strength to strength and in the 11 months since leaving hospital has amazed the Doctors and us with everything he has achieved from learning to walk, pick up utensils, feed himself, and return to school!!

We still have many appointments back in Sheffield both at Sheffield Children’s and Sheffield Northern for check-ups and prosthetics.

We have been lucky that Luke has received some prosthetic arms from both Koalaa mitt and the charity Remap, these are slowly helping him to be more involved both at school and at home.

Luke also has his new Trekinetic wheelchair. This is an all-terrain chair that suits his needs. We had to battle the local authority to get his NHS funding put towards the cost of this chair, with help from Dr K Thomas at Fischer medical Practice we eventually secured the grant, although the grant barely covered a quarter of the cost of the chair we felt it was the right chair for him. This was another long 6 month wait, the chair has enabled Luke to have more independence, especially at school where he can now play with his friends without the need of an adult stood right behind him cramping his style!!

 

However Luke’s story is nowhere near the end, the professionals still say we are still just past the start. Luke’s grafts will take at least another 6 months to properly heal and start to toughen up, we will be under the teams at Sheffield until Luke reaches the age of 21. This is the time that boys stop growing.

During that time Luke will need at least two prosthetic arms and legs per year. Though we are able to get these through the NHS we are not sure how suitable they will be. Robotic prosthetic arms vary massively in price starting from around the £5000 mark going right up to an eye watering £100,000. We do not know what we will be offered or how much the NHS may grant us if we decide to look outside the NHS for a suitable prosthetic. If you said that we spent £15,000 on each arm that would be £30,000 per year. Luke is currently 8 years old, so thirteen years of growing would equate to £390,000 just on prosthetic arms. NHS funding for prosthetic legs looks to be good at the moment we hope that doesn’t change!!

This does not include any other equipment or as yet unforeseen costs…..

Once he does reach adulthood and stops growing the prosthetics would still require changing every 4 to 5 years due to wear and tear and hopefully to upgrade to better models.

As you can see Luke’s needs will continue for many years.

 

We thank you for your continued support.

 

Amendment

We have now been to Bristol to visit a company called Open Bionics, see their web page here: https://openbionics.com/en/

Luke toured the factory and saw them being built and asked lots of questions to the staff, we were lucky enough to meet Tilly who has a pair of hero arms so could see her using them and ask her lots of questions too.

After lunch Luke had a go at controlling a demo arm. The open bionics team put the sensors onto Luke’s arm and he was able to control the arm.

The Open bionic or Hero arms as they are also called are £13,000 each. From talking to the staff there they say that Luke will potentially have to change them between two and four years, though this depends how much growing he does in a given year.

Though this brings the cost down as mentioned above he has a lot of years left to grow!

The hero arms would transform Luke’s life giving him the chance to have functioning hands again and would mean that he would be able to carry out many tasks we take for granted on his own.

 

Luke thrives at school and loves to be involved in everything. At the moment depending on the activity his teaching assistants have to shadow him and step in to help him do various tasks, with hero arms Luke would be able to do so much more by himself which would greatly increase his independence.

We, together with his physio, occupational therapist, TA’s and the school are trying to make Luke’s life as independent as we can some of the main aims before he leaves primary school is to be able to dress, undress and toilet himself independently. These are big milestones and ones that before his illness Luke manged, Luke will not want other people doing these things for him but without hands these tasks are really difficult. Hero arms would change how Luke did these tasks.

 

The reasons we require help funding the Hero arms is that Luke will need all sorts of things during his life. Luke’s wheelchair costs £12,500 of which we get just over £3000 contribution from the NHS. At 16 years old the NHS will class Luke as an adult, so at that point they will no longer fund activity legs (better known to everyone as Blades) so we will then have to fund those.

Although the NHS do provide prosthetic legs any extras, such as add-ons to make the bottom of the leg look like a calf, are extra. I am not sure as yet how the NHS fund electronic type legs, however if Luke is to drive we will have to look into this.

Along with funding new arms as Luke grows, we will also have to fundraise for a new chair, potentially bionic legs and blades from 16 years on. I foresee that for the next twelve years I will be fundraising for something to make Luke’s life the best it can be. The smell list above doesn’t even include anything along the lines of a bike, adaptations required around the house, specialist equipment to help Luke carry out everyday tasks, the cost of altering clothing, extra costs to book family holidays in suitable accommodation the list is long and I could probably write many sheets of A4 on it.

There are probably things we still haven’t thought of or as yet encountered!