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Dennis’ Liver Journey

Our son underwent a lifesaving operation, a liver transplant which wouldn’t have been possible without the generosity of the kind young man or his family making the most difficult decision to donate his organs in a most devastating time. We couldn’t be more thankful for this precious gift of life you gave to our son.

Dennis was born with a condition called biliary atresia which means his bile ducts aren’t formed properly, blocked or even exist. He had an operation called a Kasai when he was just nine weeks old to correct this, as all babies born with this condition do. Dennis was very lucky, and went almost seven years without any complications. He had ultrasounds and blood tests every 3-6 months to check how his own liver was coping.

However, in August 2015 Dennis had been fairly unwell; very tired and no appetite. That evening we put him to bed early but he woke around 4 hours later, mentioned he felt sick and instantly threw up blood. I called 999 and explained everything down the phone, his medical history and what was happening with him right now. We ran around packing a bag, caring for Dennis as he continued to throw up.

Dennis asked me, ‘Am I going to die?’ My answer was simply ‘no, but we need to get you to a hospital and fast to make this all better’. Dennis was taken to our local hospital where he picked up a bit for a while and was even cracking jokes with the nurses. Blood results showed a very different situation going on inside of him. The doctors put plenty of blood back in him and fluids to keep him hydrated then we were transferred to King’s, our liver specialist unit in London, for assessment and an endoscopy. Being nil by mouth Dennis was becoming more and more grumpy and agitated at not really knowing what was going on with his body and in all fairness as his mother I had much the same emotion.

Awaiting a blood transfusion

I discussed with consultants at King’s the next step, transplantation. It was a subject we had been building to for some time and with recent events I wanted to get the hard truth even if I didn’t want to hear it. Dennis needed to begin the transplant process soon. Everything is just a balancing act in the world and this was no different. Dennis needed to be declining in health (which he was) to be put on the transplant list but not too far otherwise he wouldn’t be able to receive a new liver. Dennis was sent home and we were told that the doctors would put the wheels in motion.

The first step of the transplant assessment was a heart assessment, to make sure Dennis’ heart was strong enough to sustain the 8-12 hour transplantation surgery. We made it a family day out and did the tourist stuff like the London Eye and aquarium. This helped calm his and our nerves about the journey we as a family were about to begin. The assessment went perfectly and the consultant assessing him told us she would recommend he had the surgery.

In November he had a transplant assessment with his future transplant coordinator Justine. She had given us a pack made by CLDF about everything liver transplant related, told me to give it a read and make a note of any questions. Well Dennis being Dennis, he wanted to know everything that was going on with his body and what was going to happen and quite rightly so, he was seven after all and able to understand so much about it all. So Dennis made a question book and wrote down any questions he had too. At the assessment we met every kind of professional you could imagine, coordinators, anesthetists, consultants, sonographers, psychologists, nurses, dietitians, pharmacists, play specialists, dentists, had several blood tests done, scans done, tour of wards and PICU. Justine was amazing and answered all our questions and more. Dennis was then presented to the transplant board who decided they would list him in January 2016.

Just 4 days after being listed we had a phone call at 2.45am – there was a potential liver for Dennis!!

HANG ON!!! NO WAY!!! I must have been dreaming this. We didn’t have anything packed and now there was an ambulance on its way to take us to London as a potential liver was coming in. The rollercoaster of emotions Dennis and I felt, and the adrenaline pumping through our bodies kept us awake the rest for the night. Once at King’s it was the usual blood tests and x-ray. The rest for the time dragged, the wait seemed to last an eternity. Dennis became bored and frustrated at being told he couldn’t eat or drink as he may go to surgery soon. Around 12 hours after we had received that phone call our hopes were broken when a coordinator came and delivered the news it wasn’t a good liver. Now of course we didn’t want anything less than perfect for our boy but all that waiting almost seemed cruel. Dennis broke into floods of tears and couldn’t understand why he wasn’t getting that liver. We went home and got more organised, had our bags packed and ready to go, had childcare plan for our other child. Really got everything together.

Life continued as usual, Dennis became weaker and weaker only attending school for half days. We saw his coordinator and others again including the psychologist. Only when talking to the psychologist did he reveal that he had been having nightmares about dying during surgery, or before a liver came up. He hadn’t told us about them because he didn’t want to stress us out, but the worry was making him emotional at the slightest thing. I was heartbroken that he hadn’t been telling us this but also loved him, for caring so much not to want to worry us further. All this did was spur me on and want this process to happen.

In April another early morning phone call – another potential liver! This time round Dennis was still excited but I didn’t raise my hopes. I learned that this liver would either go solely to Dennis or be split between two babies. Dennis lucked out this time again as the liver wasn’t big enough for him but was ideal to split between the two babies. As it happened only one of those babies got their gift that day as the other was too ill. We later met the little girl who received that liver and she is still thriving, and I am truly happy for her and her family and enjoy seeing her progress. Dennis and I returned home the same day we got the call. We needed to be with family after yet another disappointment.

Waiting for the ambulance after call number 2

May bank holiday Monday started as it should with a lazy morning with films and pyjamas, little did we know what was coming that afternoon. Once my partner Carl had finished work we went for a bit of shopping. My phone rang at 3.30pm and it was another potential liver!!! Just ten days since the last call. It felt different this time but I really believed it would happen. I mean third time’s the charm, right? We were in King’s for 7.30pm and adrenaline kept us all awake for a while, all we had been told was they were waiting on the liver to arrive.

At 3am on 3rd May the coordinator, the surgeon, ward nurse and the anesthetist marched down the hallway to Dennis’ bed and told us ‘IT’S TIME, we need to take Dennis down now, we are ready’.

We cannot explain the relief that washed over us knowing that this was actually happening. Dennis was getting his second chance, he was going to be a healthy, energized little boy soon enough. There was a whole rollercoaster ride of emotions we all could feel but because it all happened so quick we were all in positive head spaces. Dennis went to sleep to receive his new liver at 3.30am. Are you seeing the trend with the number 3 here… bet you can guess our new lucky number?

Never has time passed so slow, we just sat around in chairs on the ward catching a half hour snooze before waking again until it was actually considered morning. We received a phone call around 6am from the coordinator to say that they had taken his liver out and were about to start putting the new liver in. They like to give you brief updates on how things progress so parents don’t go out of their mind with worry. It was reassuring that things were going well and as planned.

We went for a walk to get some breakfast, fresh air and to escape being cooped up on the hospital ward. This passed a couple of hours, walking around the park next to the hospital where we could see nature springing to life, ducks and geese waddling around with ducklings and goslings. The best thing we saw was this huge old oak tree but it looked like the life tree from those Disney films. It seemed very apt that Dennis was in theatre receiving his gift of life and here we were stood looking at a life tree and new beginnings starting all over the park.

Soon after passing that very special tree we received the second update on Dennis. The new liver was in and working well without any complications, they would be closing him up and sending him to recovery before returning him to PICU where we could finally see him. We moved our belonging across from the ward to PICU and were about to head out for another walk when we saw Dennis being wheeled in completely sedated with tubes and wires covering every part of his tiny little body. We couldn’t see him straight away as the staff needed to get him settled and make sure he remained stable.

Finally, just before 1pm we were allowed in to see him. As his parents this was probably the hardest part of the whole thing, seeing him completely lifeless being looked after by machines so that his body could focus on settling his new liver in properly. Carl was so calm, reminding me that each machine, with all their wires, cannula and breathing tubes were doing an important job for our son which kept me calm. We sat with him holding his hands, making sure his favourite teddy was close by but not so it was in the way of all the various coloured wires and tubes.

Dennis in PICU after transplant

Dennis’ body reacted well to his new liver and his blood work showed this. The nursing staff told us to go and get some sleep as the next day they would probably begin waking him up and we would need plenty of rest before then. Before going to sleep I called for a final update on Dennis. He was doing fantastic still. We definitely slept a lot better knowing this.

Dennis was looking amazing when we returned the next morning. Overnight they had lowered his breathing support so he was helping to breathe for himself. His skin colouring was noticeably pinker and his eyes were actually white, something that gave us great hope that he was doing well, which was later reinforced when his surgeon Hector Vilca- Mendez came to visit him. We gave this man the biggest handshake you can imagine for giving our son a new lease of life by doing the surgery Dennis needed.

Later that day they began to wean the sedation down to see if Dennis would wake, and he responded to our voices and our touch. He was moved to HDU, a step closer to ward, which was a great sign. Again, we were told to go and get some rest as tomorrow he would be fully awake. The following morning when we walked into his room it was a complete shock to find him sat up and playing with some Lego!

Moving back to the Rays of Sunshine ward on day 3 was like coming home again, all the staff who knew and loved him were amazed at how well he was doing and how much better he looked. The next step was getting Dennis out of bed, standing to help fluid drain away from the wound but given that Dennis can’t stand unaided this was a job for the physiotherapists of the hospital.

The next few days we spent learning how to take care of a transplanted child, learning the medication, what each was for and when to give them as some of them had to be exactly 12 hours apart. We also learnt about possible harmful side effects from the medications and all the risks they may pose to Dennis in the future. We always knew transplant wasn’t a cure but a treatment!

Hector came back to see Dennis on ward on day 5 and was also delighted with how he was doing. Dennis began getting in and out of bed to get in his wheelchair or to do some drawing. On day 7 he even went down to the playroom and joined in with the singing lady called Annie who visits all the children’s wards on a Tuesday. This was the highlight for Dennis’ hospital stay as he loves music.

Each day Dennis was getting back to himself and then some as he had more energy than before. Each day more and more lines came out until he was left with just one singular line in and this was only to take regular blood samples from and to put any pain medication he needed through.

On day 10 infront of the life tree

Dennis was allowed home on day 14! His remarkable recovery continued and he went from strength to strength. Dennis returned a month after transplant for a general check-up and to take part in research trial we had signed up to. We as a family are all for the progression of medicine and if we can help by being a part of it then we will. Everything was perfect, as we had expected it to be. Dennis had thrived since transplant both physically and with his confidence. He was now attempting things he wouldn’t have dreamt about like swimming and taking part in family outings without becoming exhausted. Dennis was eager to get back to school so we asked the doctors to make sure it was ok, they explained that his immune system was particularly weak but as long as the hygiene of the school was exceptional then they had no problem with him attending without pushing himself too far. So just 6 weeks after transplantation he was back at school and thriving there too!

After his transplant Dennis went for weekly blood tests and was constantly being evaluated by his local liver consultant so we knew he was doing well. He had a couple of moments at the beginning of 2017 where his blood levels were a little off but a quick dosage change in his main medication and the levels righted themselves in a couple of weeks. Dennis has even had illnesses like sickness and diarrhoea that should have possibly had him in hospital but he fought them all by himself at home with just plenty of rest and over the counter medicines like any other child.

Celebrating his 8th birthday – pink cheeks!

Dennis has truly been lucky with his new liver and blessed by the angel donor that selflessly gave his organs to save others in such need. Every day when we watch Dennis do the simplest of tasks, we think of this kind young man and his family who are now without a relative and how hard it must be without them. We will forever be grateful to this young man and what he has done for our soldier son Dennis.

On organ donation week

Sincerely

A liver transplanted family