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Excerpt for And Then The Snow Fell by , available in its entirety at Smashwords



And Then The Snow Fell



Vikki Hammond






Smashwords Edition


Copyright 2018 Vikki Hammond





This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.





DEDICATION


For Kai. For teaching me all I know. For showing me a love I never thought was possible, a love so fierce and pure. For teaching everyone you came across what a special, amazing boy you were. For being so brave, sometimes for the both of us. For giving me 15 wonderful years that I will treasure forever, and for living life as hard as you did. I love you always. Until we are together again. x

For Bailey, Honey-Mae, Daisy and Lola for being amazing children and making me proud every single day. x




ACKNOWLEDGEMENTS


Kirsty Moseley, yet again going out of your way to help me put our story into a book.

Katie Stead, for proof reading my books.

Hilda Reyes, for designing my cover exactly how I wanted it.




A NOTE FROM THE EDITOR


With kind permission of Vikki, I wanted to add a few words of my own. This is the final chapter in Kai’s story. I feel so privileged to have proof read all three books for Vikki, and I hope I have done them justice.

Vikki’s story of bringing Kai into the world and raising him as best she can, despite all the obstacles in her way, is truly inspiring. She is an amazing woman who fought to the bitter end to ensure Kai had everything he ever needed.

When I was first introduced to you through Kirsty I didn’t know your story, but through reading these books for you your story is now forever etched in my heart.

Stay strong forever Queen Vikki, your King will be waiting for you when your time is ready.

Love and strength to you always.

Katie xx




AUTOR’S NOTE


Some names have been changed to protect people’s identities.







CHAPTER 1


RECOVERY

2015/16



Looking after a very poorly child is hard at the best of times, but to be left with no support was bloody frightening.

After Kai came home from Great Ormond Street hospital, I thought we would be inundated with appointments, support and someone to contact for advice.

The reality was me home alone with Kai constantly worrying if he was healing well, if his bowels were opening enough and trying to teach him to walk again.

Kai had been rushed into surgery after a very serious bowel blockage which then caused him to have a cardiac arrest, sepsis and septic shock. We got told so many times that Kai wouldn’t make it and asked if we wanted to turn off his life support machine. We refused, and after a whole month on life support we finally had our boy home where he belonged.

We later found out that Kai’s event could have been due to the drugs trial he was on. Everolimus, a cancer drug, showed signs of helping those with Tuberous Sclerosis Complex. The drug showed signs of shrinking tumours that Kai’s little organs were riddled with. His heart, kidneys and brain had so many tumours. His seizures were also very bad and there was evidence to show that this drug helped.

We spent months getting up at 5am every Monday to travel to Addenbrookes hospital. We were not told if the drug was a placebo or the actual drug itself. We were to record all his seizures in a diary. His weight, blood pressure and bloods were done every week to make sure he was OK.

The drug trial was not something we had taken lightly. We read up on it as much as we could, discussing the pros and cons. As it was a drug trial we were putting Kai onto something that had very little information with regards to TSC patients. We were running out of options, and watching Kai having so many seizures helped us with our decision.

At the time I really thought this could be the answer and Kai would be able to continue the drug after the trial ended. Unfortunately, after Kai’s bowel blockage Dr James, Scott and I agreed that we couldn’t risk him going through something so dangerous again.

The drug has done wonders for other patients, but for Kai it nearly cost him his life. The side effects aren’t well known. Kai didn’t have the usual ones such as mouth ulcers - he had become very constipated, which when I pointed out to professionals was met with sachets of Movicol. This didn’t shift the hard lumps, it just caused the overflow to go around. I felt such guilt that I had put him on a drug that had caused his bowels to become impacted. There really was no other option and, unfortunately, Kai was unlucky. I know many others to which this drug has been a life saver.

We were told Kai would need regular appointments at Great Ormond Street Hospital, as well as home visits from the community nurses and a local support team.

As the weeks and months went by we had none of this, the physio team only came twice. They showed us how to strengthen his legs and gave us a support belt to assist when he could stand up. Kai could barely stand at this point, it was like having a baby all over again, a 5-foot-tall baby!

Kai had lost so much weight he looked and was classed as malnourished. It was a constant cycle of giving him high fat foods, lots of snacks and fluids and then worrying if he could go to the toilet after. Touch wood his bowels after the operation were better and he was filling his nappy up as he should.

Throughout this period, we were sleeping alongside Kai in his room as we were worried in case he needed us or filled his nappy during the night. When Scott went back to work it was hard for those few months being housebound with a child as big as Kai. I cherished every moment together though, knowing he would soon be back to school and I would be worried sick about leaving him.

Over time, Kai was able to sit up, that moved from sliding off the sofa and scooting across the carpet on his long ‘bambi legs’ as I called them. He was so chuffed that he was able to move about and I can’t take any of the praise as it was all him. Sheer determination and strength on his part, Scott and I often said if that was us we would be bed bound for months after. Not Kai he wanted to be back up and causing mischief as soon as he could!

It wasn’t long before he was trying to stand up alone, which very nearly sent me grey. If I left the room I would hear a bang and come back to find him on the floor smiling. He was so determined that Scott had no choice but to hold him up and walk him up and down the room every night until he got it all out of his system.

Around six weeks after his operation Kai was walking with Scott when he shrugged him off and walked alone, very unsteady but alone. His little face beamed, and he shouted, “Mum, Mum.” We were all cheering and laughing and managed to get it on video. Nothing kept our boy down for long!

With no sign of a follow-up appointment, I was chasing the hospital daily. I felt angry that we were forgotten about with no concrete plan in place for a child as poorly as Kai was. It took a lot of shouting, screaming and threatening to finally get our appointments through.

They were pleased with Kai and couldn’t believe how a child so close to death was now happy and walking about as if nothing had happened. In fact, the only reminder, physically, for us was his scar running up his tummy and the weight loss. We started to increase his milkshakes to 2-3 sachets a day adding double cream and full fat milk into them.

Trying to get weight onto someone is harder than it sounds. Especially as someone as active as Kai! Even if he was sitting on the sofa Kai would be rocking away and bouncing up and down. I would sit and wonder how many calories he was burning off after all my effort!

Three months after coming off life support Kai went back to school, he was so happy sitting in his wheelchair waiting for his school bus to come. I was sat in floods of tears worrying about the phone ringing with another message to meet them at the hospital like before. His school were amazing and kept in constant contact with me. They were equally as nervous as I was, knowing that so much could change in an instant with Kai as we had seen months previously.

I was so happy to have Kai home where he belonged, but mentally my mind had taken a battering. Night times, again, were the worst and panic had started to seep out of every pore. I was obsessed even more so with Kai and what could go wrong next. A slight worry would build up in my head and flow out in a horrid built up panic. My heart would race then slow right down until I was convinced it would stop at any moment. I would shake and tremble, have flash backs of Kai wired up to all those machines, and my kids crying down the phone at me to come home.

It got to a point where I was driving myself mad and Scott, Beckie and Terri told me to go to the Doctor. I felt horrid, everyone could see Kai was now home, back to school, walking and gaining weight. I felt like screaming that this wasn’t the end, I was still terrified inside and all the responsibility of looking after Kai was on my shoulders. What if I missed that he hadn’t opened his bowels today? What if he had opened his bowels and it wasn’t enough? Had I given him enough calories today? I felt horrid taking Kai out so obviously underweight as I felt people would think I wasn’t doing my best for my son.

I took everyone’s advice and went to see the Doctor. He was amazing and listened to how I felt, listened to my explanation of flash backs, panic, dread and not sleeping. He diagnosed me with post-traumatic stress disorder and depression.

It sounds silly to say but I felt like I had let myself and everyone down. Here I was at home with my family and everything I ever wanted in life. Children, a loyal husband, a home, our own business and I still couldn’t be happy. Why, after Kai was home and, on the mend, was I sinking into a fog of depression again? I hadn’t felt low like that in years and struggled to understand how a mum of five could be diagnosed with PTSD. At that time, I thought it was what only soldiers got! The doctor prescribed some anti-depressants and put me on the list for counselling, which I knew I needed more than tablets. The tablets I put in my cupboard and they stayed there; I was never any good with trying medication!

The months rolled past, and as well as dealing with my children’s emotions I had started to deal with mine. The girls were especially worried every time Kai had a hospital appointment. Daisy would sob and cry and beg me not to go as she was worried I would not come back, like in February when I told them I wouldn’t be long and ended up staying in Great Ormond Street Hospital for over a month. I often felt guilt over the things my children had seen in their short lives. Lola, for instance, knew from around 18 months how to deal with a seizure. She would push toys out of the way and get Kai’s mat for me to lay him on. Honey-Mae is very like me, she will put on a brave face and smile when inside she feels anything but happy. Daisy is the sensitive one and can cry at adverts (she gets that from her Dad!) and Bailey will go off to his room and work out his emotions alone.

I had started to feel a bit more in control of the panic and felt happier that I had shared with someone how low I was feeling. Of course, the flashbacks and panic were still there, but with every day it got a little easier to cope with.

The months flew by, Kai was gaining weight which was a big relief as I had become obsessed with it. Dietician input had been organised by Dr James which was an immense help, but there were still very few follow-ups regarding Kai’s bowel which worried me a lot. Surely a child that had been as poorly as Kai and still had on going issues with their bowels should be monitored closely with regular check-ups?

I could not understand it, and as self-pitying as it sounds I was fed up of my child always being forgotten about. Every single thing was a fight. It was exhausting constantly chasing appointments and results, medication and equipment, or an explanation for the lack of it! I couldn’t understand how some families had so much help and support yet we, like many others, had none.

Sometimes Kai struggled to open his bowels and I would try everything from massaging his tummy, warm baths, hot drinks and laxatives. He was still having Movicol and suppositories but sometimes he would still strain going to the toilet.

I wasn’t told how much he should be going or how regularly, there was no plan of action in place, no after-care and no one who seemed to give a shit! Beckie would help me sit him on the toilet and we would raise his legs up and sit for over an hour sometimes waiting for him to go. He would push and strain and sometimes we were lucky, then we would be dancing around the bathroom singing and cheering while as Kai sat bemused.

We still had plenty of other appointments to attend - Kai had an appointment for nearly every single organ in his body. Heart, eyes, brain, kidneys, spine and feet to name a few. He had now been diagnosed with Scoliosis of the spine, which is where the spine curves from side to side, this can be very dangerous in severe cases but luckily his was mild. He was also very flat footed, and his feet turned inwards slightly, another reason why we called him ‘Bambi legs’.

Kai had a very distinctive walk, it was so cute, he would slightly hunch over and would almost gallop his steps. We also found out around this time that Kai’s kidney tumours had grown quite quickly, this was a huge worry to us kidneys problems with TSC can be very complicated, and in some cases can be life threatening. Although not big enough to cause a concern, the rate they had grown in a year was enough to worry us all. It was thought that coming off the drug trial had allowed his kidney tumours start to grow again.

One of the very reasons we wanted Kai on the trial was to help with his seizures, but also to shrink his brain tumours and stop his kidney tumours from becoming a big threat to him. Now he was off the drug there was nothing stopping them picking up the pace and continuing as they did before. I felt sick, I couldn’t let him back on the drug due to the severe side effects he had from it, but now he was even more at risk.

That is the sick thing with TSC - it is so unpredictable and as soon as you think you have one issue under control another problem arises. We were also told that Kai now had new cysts on his kidneys, which again can cause problems later if they get to a big enough size, as they can interfere with kidney function and/or cause a kidney bleed. We didn’t know what to make of this; it was positive they still were far away from causing him problems now, but what about the future?

Kai’s heart was also a concern as from the cardiac arrest they were monitoring him yearly. We were sent a little box to monitor his heart overnight, which I was adamant he wouldn’t keep on, but Kai being Kai always liked to prove me wrong and he kept it on the whole time! This then had to be sent back to the hospital through the post and they would give you the results a week later.

Of course, it didn’t happen like that and I was chasing results for a few weeks after. They found that Kai had a few ectopic beats in the night which sent my anxiety through the roof. We were told that they weren’t concerned by this result as Kai was very active with his movements. It showed his seizures which they expected, but still it doesn’t stop the worrying.





CHAPTER 2


A YEAR TO THE DAY



Christmas was fast approaching and after the worst year ever I was so excited! I never thought I would get another Christmas with Kai after him being on life support, and we were determined to make the best one yet! My step mum, Terri, had now moved up from London to be closer to us, along with my brother, Harry, and my sister, Lily-Rose.

We had never spent a Christmas together before, so we decided that this year we would, after all we had so much to celebrate! My sister, Georgia, and Scott’s Auntie Sheila, were also going to be spending Christmas with us, so there would be 13 of us in total all at my house. I couldn’t wait and did a huge food shop, two huge bags of potatoes, a massive turkey and so many vegetables the kids all groaned! I filled up two trollies worth of food and all the things you deprive yourself of for the entire year, or never usually buy, but suddenly decide that you now need them for this one day!

We decorated the house and put up the tree, which Kai hadn’t really bothered with since he was very little, now suddenly he couldn’t keep his hands off it! We couldn’t have the chocolates in wrappers hanging anymore as he now knew what these were and would get up and help himself to them, wrappers still attached! Every time I left the room he would spring up and give the tree a slap, or run a Kai shaped hole into it.

Every Christmas eve it was our tradition that Beckie comes over with Jude, her son, and we would open our presents from each other and have a McDonald’s. We have done this since Kai was two years old, and of course it couldn’t be any other takeaway but a ‘Magic M’ as we called it.

Christmas came, and we had a lovely day. The children got everything they asked for and more; they had all been through so much I wanted this to be a Christmas to remember!

The tree was a sorry state, the balls had the glitter sucked off them by Lola and Kai, the tinsel was looking bare and there were so many Kai holes in it I gave up trying to reshape the branches!

We played games such as speak out! The kids all went up to Scott’s man cave and played pool, but Kai of course had to keep to his routine and wanted his bath. We were all so thankful that he was here with us, as I don’t think any of us thought we would be as lucky as we were.

After being told so many times to say goodbye to Kai here he was, a face full of chocolate, hiccupping loads as he was so full, splashing around in a bath full of bubbles and smiling in contentment. I would never take any day for granted again.





CHAPTER 3


2017



With a new year came a new us. We were determined this was going to be our year. After the horror of the year before I couldn’t wait to make new memories! It started off great! My lovely Facebook friend Teri had nominated Kai for a ‘be brave bear’ through a charity.

Kai had been accepted and was sent a lovely blue dinosaur with all the words associated to him across its tummy. Loved, beautiful, star, fearless, precious gift, cherished, courageous, special and brave. St Begh’s Junior School in Whitehaven had brought it for Kai through the charity.

I was so blown away by Teri’s nomination, and for the school for being so kind and buying a gift for someone they knew nothing about! I sent them a thank you email with a picture of Kai next to his bear smiling that cheeky smile of his.

Kai’s birthday was coming up and I couldn’t quite believe he was going to now be fifteen, today was an equally special day as Kai shares his birthday with Jude, Beckie’s son.

I never thought Kai would see this birthday, after the previous year in Great Ormond Street, and he was made a huge fuss of. We ordered a huge chocolate cake from The Cakey Lady who, as usual, went all out and made it that extra special. It had all Kai’s favourite chocolate treats on, such as Bueno, KitKat, chocolate buttons and Flakes. It was topped with a crown on, a big colourful number fifteen and ‘King Kai’. We all gathered at the table, video recorder and camera ready to capture another special milestone.

Kai’s face when the cake was brought out with lots of candles on was priceless. We placed it in front of him singing ‘Happy birthday’ at the top of our voices. He looked at the cake in shock and before any of us could react he grabbed a handful of chocolate fingers and stuffed them straight into his mouth as fast as he could. We were crying with laughter and the kids were all clapping while Kai sat beaming with a face full of chocolate.

Beckie had arranged a big party for Jude with a magician so we all went to that while Scott went off to work. Kai looked so smart in his vintage car shirt, green chinos and his hair neatly gelled. Every time I looked at him I felt such pride that I had made such a gorgeous child.

The children had so much fun joining in and playing games, while Kai was being fed sneakily, and early, from the buffet. Whenever Kai went to a party he would look around with his big eyes for a soft touch to take the bait and come and sit and feed him, it worked every time!

Kai then had a huge seizure in his wheelchair, it was so violent and aggressive, his body shook and he looked petrified. During a seizure he would now completely wet through his nappy. Even if his nappy was dry he would flood through it and he would be covered from neck to toe in urine. He would also sleep for a long time as the seizure was so aggressive.

Beckie and her mum, Dot, helped me lift Kai behind a curtain where we cleaned him up, changed him and tilted him in his chair so he could sleep it off.

While everyone was still running around having fun and eating, Kai slept through. Beckie made him up a huge plate of food to take home so he wouldn’t miss out on his favourite part of a party.

I was so angry that his seizures were now so unrelenting, any time, any day, including birthdays, Kai would have now very frightening seizures. I was used to seeing him have seizures from four months of age, but even for me the latest ones were scary.

They were uncontrollable and exhausting for him. He would drop and slam to the floor, shaking and banging his head repeatedly while I tried to protect him from further injury. Many times, he had a bumped head, black eyes, bruised back and split lips.

Even with his amazing helmet (my friend, Rachel, got him through a go fund me page) which protected his head so much, he couldn’t wear it all the time. Sometimes, it felt like the seizure knew this and would wait for that very minute I took it off to bath him or change his nappy.

Kai was so tall now, which he just loved to show off about it. This made it harder as when he had a seizure he was falling from a greater height. Kai was now 5ft 5”, the same height as Scott and I, but as he walked on tip toes he seemed a lot taller.

He found this hilarious and would come over and size us both up, he would stand right up to you on tip toes, raise his chin and laugh. We would then have to make a huge fuss about how tall he was, he would laugh and give you a smug smile. If he was sitting down and you went to cuddle him, again he would give you a smug smile and raise his chin to show you how small you were in comparison to him!

My brother, Harry, and my sister, Lily-Rose, were towering above Kai but he would still insist he was the tallest. Sometimes, Harry would prove him wrong and stand his 6’ 4” self over Kai, he would look at him in disgust and walk away! With Lily-Rose he would grab her in a head lock hug and then lift his chin above her as if to say, see I told you I was the tallest!

Sometimes I would be minding my own business and Kai would come up to me and lift his chin up, then smile down on me and run off laughing. He loved a swear word, he would cry laughing if you called him a little sod or a little shit.

So, I would call him a little shit and he would hold his belly crying with laughter. Beckie, Scott and I would often playfully shout an insult at him when he was naughty, and he would cry real tears of laughter and joy.

We used to say imagine if anyone heard how we talked to him, they would think we were horrid to him! If we were out and Kai was being his cheeky self, I would whisper a naughty word into his ear and that would set him off holding his belly, both of us laughing at our secret joke.

Kai’s bowels were still a worry, even though he was going to the toilet regularly I was concerned. He had started to bring his food back up after eating which set alarm bells off. He was still on sachets of Movicol, yet we still had no regular appointments or check-ups, and no community nurses coming in.

I hadn’t been taught to check his tummy properly, which even if I had I still wouldn’t have been happy, as so many times his tummy was checked and yet a two-litre blockage was inside him! One day as I was showering Kai I noticed his tummy looked very swollen. Instantly, dread washed over me in waves.

He was skinny everywhere else, still putting on weight at a steady pace, but looking at him now his tummy was swollen and protruding I called Scott into the shower room to look at him. I was known to over react when it came to Kai and over-analyse every little thing. Scott agreed his tummy was swollen, I instantly got him out of the shower, dried him and lay him on the floor.

Pressing his tummy, he happily lay chewing the towel while my heart hammered so fast in my chest I thought it would shoot out at any moment. I could feel a hard mass in his tummy for sure, I felt sick and confused. He was still opening his bowels why, and how, had this happened? Not every day but that didn’t concern me, not everyone has a bowel movement every day, and he was filling his nappy enough for me to not be worried.

Now I was questioning myself, did he do enough at every nappy change? Did it just look like a lot but if done in the toilet you could see it wasn’t? I took pictures of him laying down, standing up, on his side and sent them straight to Beckie. She instantly replied that yes, he did look swollen but maybe he was blocked from today? I dried and dressed him, the little monkey was loving all the attention and thinking mummy was tickling him.

I decided to give him a couple of days and see how he was, I didn’t want to rush in and look silly when he was opening his bowels and it certainly didn’t look or smell like over flow as it had before. I sent Kai to school as usual and phoned them explaining my concerns. They kept a close eye on him and agreed he looked swollen.

The next day I kept him off school and all morning he was sick. I knew straight away that this was not a good sign at all. I took him straight to the hospital, I wasn’t taking any chances. Last time there had been no signs at all that Kai’s bowel were blocked, he was happy, he was still eating, drinking and in no sign of distress at all. This time there were signs and to me that was a blessing.

As soon as I got to the hospital and explained why we were there I knew it wasn’t seen as urgent. I couldn’t understand how it couldn’t be when only a year ago to the very week we were being blue lighted to Great Ormond Street Hospital while Kai’s organs struggled to stay working.

After being observed they weren’t concerned enough to keep Kai in, I was exhausted and battered with the constant fighting and being over-looked. I was told they were at full capacity, to take Kai home and they would call me with a plan.

I didn’t like it one bit but had no other choice and did what they said. I had been at the hospital all day fighting Kai’s corner, and even given them a copy of his notes to say how dangerous and quick his last hospital stay was. No obvious symptoms yet Kai was on life support as quick as that, now he was actually showing symptoms and my gut was screaming at me to do something, anything not to take him home.

I had no choice so home we went. I kept Kai at home for two days constantly phoning our two local hospitals to try and see if he could be admitted, I was told that they were both full. If I was to take him to the hospital further away he wouldn’t be seen, as they too were full. At this point I was so upset and frustrated and I told my good friend, Paula, how I was feeling. Straight away she typed an email for me to send to the hospitals PALS department, which I did.


To whom this may concern,

My son, Kai Hammond, has a bowel impaction. He currently has a distended stomach, is struggling to pass stools and is lethargic. He has complex disabilities and a history of a rupture of the bowel, leading to life threatening sepsis and a lengthy stay in PICU and GOSH.

I am flabbergasted with this history we are now being left to cope alone with no back up. This isn’t because he is safe at home, this is because our local hospitals don’t have any beds for a child at such high risk.

What stuns me even more is the attitude of passing the buck and it not being anyone problem. It is my problem and Kai is at high risk of recurrence of life-threatening complications.

Please take urgent action before he becomes seriously ill. I am desperate for him to receive timely, and caring, medical attention, not to be used as a pawn between two hospitals, which seem to forget he is a person with the right to appropriate medical care. I look forward to a resolution between the hospitals by 3pm today.

Are you waiting for him to become so ill his life will be at risk again? I am sure that will make for an interesting court case for negligence in the future. I am a desperate mum of a complex child who is deteriorating, please someone take responsibility and move this on.

Vikki Hammond


Paula had always been great at the bureaucracy of hospitals and I always turned to her for help and guidance, which even today she is there for me.

The following day Kai was still throwing up, I was changing his tops constantly and now his nappy was also dry. His seizures had got to the point where he would be dry all day and then have a huge one that would flood through his nappy. I was told this was common with people with disabilities to hold in their urine, now I was worrying he had a blockage and it was preventing him from emptying his bladder. I phoned the hospital again, they were supposed to call me. I was told to keep him at home and they would call me once they had a plan in place. It wasn’t good enough and I marched him straight back to the hospital.

At this point, I think the hospital were fed up of seeing me and picking up my calls, they put me in a side room. I was told not to feed Kai or let him have anything to drink. We sat for hours, with them only bothering to check in on us once. I was now at boiling point and dangerously close to losing my shit, which takes a lot for me to do.

I hate upsetting people, complaining and making a nuisance of myself, but my mind was racing as all I could picture was Kai on life support, tubes covering every inch of his beautiful face. There was no way I was having that happen to him again.

By this point I had been at the hospital for hours and I completely lost it. I pulled a junior in and demanded to know why the hell I wasn’t being listened to - how serious did it have to get before they would act? Why were we placed into a side room and left all bloody day, with a child that had no idea why he couldn’t drink or eat a thing? We both hadn’t eaten or drank for seven hours at this point and I was livid.

The response I got made me shake with anger; they had forgotten about us. The entire day we were sat there with not even a nurse coming in to see us and we were forgotten! My face turned red, my heart hammered in my chest and my head was pounding. I’d had enough of this shit, it wasn’t bloody good enough, yes, I understood they were busy. I know how under-staffed they can be, the waiting room was jam packed with people waiting to be seen, but this was urgent!

This wasn’t a sprained ankle or a sore throat this was life or death and every minute counted. At this point they realised I wouldn’t be going home, not of my own accord anyway. I wasn’t leaving until Kai had been X-rayed and fully checked, I wasn’t taking no for an answer and I wasn’t being fobbed off with them just feeling his tummy as that isn’t an indication of what was going on inside.

The junior went to get a Doctor, who I could tell was pissed off at this angry woman who wouldn’t just take their word for it. I told them I wasn’t going home, I went home the day before and his symptoms had worsened, I had spent the entire night in his bed in case he was sick in his sleep. I had spent the morning waiting for a phone call that never came, and quite frankly wouldn’t come as I knew full well they didn’t have a bloody plan in place.

Busy or not, tough we were there now, and I wasn’t leaving until Kai was X-rayed. My pleas fell on deaf ears, although feeling for themselves they could feel his bowels were impacted yet they wouldn’t X-ray him. I told them to phone Kai’s bowel team in GOSH and come up with a plan with them, as I was staying put.

At this point Scott phoned me after sorting the kids out with my wonderful step-mum, Terri. When I explained to him what had happened he was livid and said he would be with us as soon as he could. I knew once Scott got to the hospital and had seen how we weren’t being listened to he would completely lose his shit as well.

I was constantly updating Beckie by text and phone, she too was disgusted. The Doctor agreed to transfer me into the children’s ward and keep Kai overnight while she phoned GOSH to see what they could do from there. Thank goodness we were, at last, one foot in the door and wouldn’t be sent home and ignored.

The children’s ward was amazing, and I could not fault them at all, straight away a nurse came over and apologised for everything. Obviously, it wasn’t their fault and now I had calmed down I knew the hospital was very busy, but all I wanted was for Kai to be checked over.

It was now evening time and Kai was placed on the ward. He had to sit and watch children eating and drinking, and I felt such guilt. He didn’t understand why he couldn’t have anything, and right now neither did I. No plan was in place, I had starved him all day for nothing and I mentioned it to the nurses.

By now, my beautiful friend who works at the hospital, and I won’t name, had been in contact with the ward and explained everything. I had been keeping her updated all day, as well, and bless her I will never forget what she done for us, as the nurses who were already so lovely to us went all out.

They moved us onto a closed ward and opened it just for us, they could see Kai was fed up of being stuck in his wheelchair all day. He had free run of the entire ward and had sandwiches, crisps, chocolate and drink brought out for him. He ate everything they had on offer and was happily skipping around the ward.

He walked straight over to the nurse who was sat with us, looked into her eyes and said, “Yeah baby,” in his Jamaican accent. This had us all in stitches and I think she fell a little bit in love with him. Kai would say ‘Lola’ and ’Yeah baby,’ in his accent, we called it his Patrick Truman voice (from Eastenders) as they sounded so alike!

We were soon talk of the ward with the nurses and one after the other they came in to apologise, to make us comfortable and ask for details to get things moving. They did more for us in one hour than A&E had done in two days.

They explained they were on the phone to GOSH as we spoke and that the current plan was to admit Kai for the night and give him an enema to see if that would shift the blockage. The Doctor would be down to see us soon, and instantly I felt like a huge weight had been lifted from my shoulders, finally someone was listening to us!

The nurse came back into the ward and was furious, she said the Doctor who was supposed to be dealing with Kai had now gone home for the day. She was so angry she was nearly in tears, which by now I very nearly was to! She was disgusted we had been left and forgotten about, especially after talking to Great Ormond Street Hospital and hearing how serious this situation was.

She had told one of the other nurses to call the Doctor at home and explain herself. She also told me that the bowel team from GOSH were taking no chances whatsoever and were to send Kai for an urgent X-ray. I cried tears of happiness, that’s all I wanted in the first place, just to know the size of the blockage and then come up with a plan of action.

I also told her that we had no social worker, no community nurses, no local support and no one to call if we had any concerns. She was outraged and straight away put in an assessment for community nurses, social worker, a local paediatrician and bowel team.

All I wanted was someone to listen to me and now they finally were, Kai went down for his X-ray completely oblivious to all the commotion fuss and worry. He loved X-rays as he got to lay down and relax in a dimly lit room.

Afterwards, we were taken back to the ward where Kai continued to make use of the completely empty space. Flapping his hands and running in circles, I sometimes looked at him and was so glad he would never feel pain, worry or loss. He would never have his heart broken, would never worry about money or bills or work. I would never have to share him.

Scott and I had plans for once the three of us were older. We would buy a camper van and drive around the UK taking in the scenes, eating chips on the beach with the sand between our toes. Just the three of us together. We couldn’t take Kai abroad as it was too much of a risk and a worry. If something happened while we were overseas, I couldn’t even imagine what we would do.

The nurse broke my thoughts and snapped me back to reality when she said the results were back. She took me over to her computer screen and pulled up Kai’s X-ray and straight away I knew this wasn’t good news. Kai had another blockage right up to his chest, I felt sick, my head started to spin, and I leant on the counter to balance myself.

I felt so much guilt, how had this happened again? How had I not seen the signs before? The nurse was talking to me, but I couldn’t hear her, I could see the tears in her eyes and feel the touch of her hand on my arm, but my head was spinning. I managed to compose myself enough to ask, “How?” How could this possibly have happened? Why was this allowed to happen? Where was our follow up care plan, and all the things we were promised when Kai had come off life support?

Things started to move quickly now, and it was decided we would be admitted onto the ward, which for one gave me great concern as Kai couldn’t sleep safely in a normal bed. He would stand up and once while in hospital two days after major brain surgery he stood up and fell straight off the bed and smashed his head. Ever since then I had asked for a room, with a low bed or a mattress on the floor which we would share.

For health and safety this wasn’t possible as all the rooms were full. This is one thing I find very hard to understand. If a child or adult has complex medical needs and requires a setting as safe as possible this cannot be made possible in a hospital.

I understand that hospitals are very busy places, and the cost of such equipment is high, but for those out there that couldn’t sleep in a normal single bed it is a huge deal. The nurses were amazing and trying their best to accommodate Kai’s needs as another nurse phoned GOSH to update them of his results. I rang Scott, Terri and Beckie and updated them on the latest news. No-one could quite believe this had happened again, almost a year to the very day.

The nurse came back from her phone call and told me there was a change of plan. Kai was now going to be blue lighted to Great Ormond Street hospital as the bowel team there explained how serious this could be. They wanted to give Kai the enemas and observe him for a couple of nights.

Now I had to phone Scott and ask for an overnight bag for the both of us. We were both livid that Kai, again, had been failed. I was in so much of a rage that at that point it time I could quite easily have gone on a rampage!

Scott came with my brother, Harry, and Kai was over the moon to see them both, he ran straight up to Scott and took him by the hand to the nearest door. Scott told him, “No, I can’t take you home,” and Kai was ignoring him and leading him to every door he could see. It was if he was saying “I’ve bloody well had enough of this place now”!

When that wasn’t working, he walked over to Harry who was still over six feet tall. He stood on his tip toes and tried to show Harry how tall he was - it failed! He didn’t even reach Harry’s nose, he gave Harry a filthy look and walked off in disgust. We were laughing at Kai’s facial expressions, for a child with very limited one worded speech the boy could say a thousand words with his face.





CHAPTER 4


THE FIGHT



We were transferred from our local hospital to GOSH, I had hugged Scott tight and felt sick that, yet again, the children would wake to no mummy at home. I always felt torn in two, I would never leave Kai’s side for a minute in hospital as no one knew Kai like I did. He would also drive everyone mad and get up to all sorts if I did leave him, all night parties and slapping nurse’s bums.

I was also fully aware that leaving the kids with no notice was having a huge effect on them all. Daisy and Honey-Mae took it the hardest and had become very clingy; I had to hide the fact that I had a hospital appointment as Daisy would get herself in a state and be convinced I would be gone again for weeks or months on end.


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