Fun after the Fontan

As you probably know by now, I am not the best at updating but I can not actually believe it has been over a year since the last update on Sam! 

What can I say… Life is good!

Samuel is 4 years old and growing up fast! He is very much looking forward to starting primary school in less than 4 months time. 

Since the last update, we took the kids on their first big holiday on an aeroplane, we celebrated Sam’s 3rd and 4th birthday, had another Christmas been and gone and more recently we went on our second amazing holiday to Ibiza! 

Health-wise, Sam has had no admissions to hospital and has had two very positive check ups with his cardiologist. He is due again within the next couple of months.

In June last year, Sam took up Martial Arts and has worked his way up to an orange belt and has won medals and a trophy in a competition. These are just unbelievabely huge milestones that we never expected to be experiencing at the beginning of this journey. 
I currently work as a Care Manager specialising in home care for clients with Spinal Cord Injuries. Rich works for a local housing association providing garden maintenance to vulnerable tenants. And Emmie is thriving in her first year at primary school. Sam enjoys three days at nursery and copes generally well. They are supportive of him and his condition and they handle any restrictions he faces very well. 

I continue to feel very passionate about supporting others who are on a similar path and will always welcome new parents or parents to be to contact me. 

We also continue to support the Evelina and other organisations that support families with HLHS. My next adventure is an abseil down St Thomas hospital to raise funds for the Savannah ward. 

Watch this space for photos!

Thank you as always to everyone who follows Sam’s journey and supports us along the way. Of course, we know that we have an uncertain future ahead of us but for now, we are so full of joy and contentment in life that we don’t like to think about the future too much. 

Enjoy every day, cherish the special moments and celebrate every milestone!! 

All our love,

The Davy’s

Xxxx

 

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Evelina Abseil to raise funds for Savannah Ward. 

We are abseiling 250ft down St Thomas Hospital for Evelina London Children’s Hospital because we are supporting the amazing Savannah ward

http://www.justgiving.com/savannahheart

Latest Update:

Thank you to all who sponsored us and donated gifts for the ward. We raised £550 and delivered 4 bags of craft materials, books, games and toys for the children on Savvanah ward.

 

 

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Ted needs your blood!

teddyhasaspecialheart

Blood-Donation_0

So many wonderful people have asked how they can help Ted and our family. We are so grateful for the meals some of our kind friends are making as it is so so so helpful! Another way to help is to donate blood.

It is really easy to go to your nearest Red Cross Blood Bank. It doesn’t take long.

Every time Ted has open heart surgery it is necessary for the surgeon to stop his heart. He is then hooked up to an amazing  heart-lung machine (cardiopulmonary bypass) that then takes over the job of his heart, lungs and kidneys for the duration of the surgery.

The operating room will be packed full of people tomorrow including a team of perfusionists who operate the bypass machine aided by loads and loads of donor blood. So if you are able to spare a bit then please save a life or two.

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Milestones come in all shapes

Recently Sam asked to look at pictures of himself in hospital as a baby. He asked lots of questions mainly about about the wires and tubes and why he needed them. He looked at his scars and compared them to now. I guess it’s the start of many chats we’ll have about his life and journey.

We have always known that the time would come to answer his questions, and I’m sure the questions will evolve as he grows up. And I also know how important it is that we answer his questions in an age appropriate manner. I’m not going to confuse him with baffling terminology, I just simply tell him what it is. For example, Sam asked what the tube on his face was for. I told him that it put milk in his tummy as he wasn’t able to drink it. And that he had medicines down it to help him get better.

Despite it being a hard conversation and one of the last things you want to discuss with a 3 year old, it was quite humbling and I feel as though we must also celebrate it as a milestone. I know it’s not your typical proud parent moment, but I can’t help feeling so humbled by his curiosity and strength, he is almost fearless and I can tell that he is proud of himself.

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The Fontan completion!

I write this message as I sit at home watching Sam play with his Christmas presents. Yes that’s right, we were at home for Christmas!!

Not only were we home for Christmas but we were home way before it was time to put the tree up! Samuel had his third open heart surgery, the Fontan completion, on the 5th of November and we were home for the 13th!! 8 days post op!!

This boy is truly AMAZING!!

It’s hard to really explain what happened as Samuel was expected to be in recovery for 2-3 weeks but he recovered miraculously well and to everyone’s surprise we were able to take him home!

The time we spent in hospital was still extremely tough but somewhat easier than previous stays. I think the hardest part was seeing Sam in so much discomfort and having to comfort him as a child and not a baby. Explaining why he had to do things that were painful for him and negotiating with him. But I made this my main focus and he certainly kept me busy!

Here’s my account of those life changing 8 days…

On the 5th of November at approx 8.30am, we carried Samuel, dressed in just his surgical gown, down the corridor of the hospital ward and in to the lift. Accompanied by two nurses, we went down 2 floors to the operating theatres and walked up the long tunnel toward the room where Samuel’s Fontan surgery would be carried out. This was a familiar walk, we’d been here twice before, but this time was different. Samuel was over 2 and half and he knew something was happening. Our minds were not on how we felt at that moment but on how Sam felt. We tried to keep our minds occupied so that neither of us would fall apart in front of him. I remember pointing out the pictures of disney cars on the wall trying to distract Samuel from the intensity and the anxiety that surrounded him.

When we got to the anaesthetic room, Sam was familiar with the procedure of the gas and when asked to do so, he put the mask over his face, not forgetting to take his dummy out first! Little sweetie. He took a while to go to sleep and did fight off the gas a little towards the end. But he was soon fast asleep and we were asked to give him a kiss goodbye and leave pretty promptly. I had his dummy, bear and blanket in my hand. Please bring my boy back safely I thought.
I managed to hold back my tears until I reached that long tunnel and I cried all the way back to the ward.

We collected Sam’s empty pushchair and went back to our accommodation to pack our things up. Our anxious minds were temporarily distracted by the mouse we’d found and trapped in the bathroom the night before, the manager I reported it to apologised, grabbed a towel and firmly told me that he’d ‘deal with it’, we then heard him whacking a towel on the floor to try kill it! It was shocking but we had to laugh at the whole situation (not at the poor mouse) but at the way the guy was ‘dealing’ with it! I was glad Sam wasn’t there as he’d become quite attached to the idea of the mouse living in the bathroom! Our belongings and our emotions now somewhat gathered, we went for a LONG walk around London, I think we covered around 4-5 miles and ended up back at the hospital for around 11.30am. I remember as I walked, I quietly sang a song called Voice of Hope by Lara Martin. It’s a Christian song that was written for the families of the 9/11 victims. It was really quite powerful and kept me going, if at any point my mind wandered to what was physically happening to Sam, I refocused on to the lyrics, I remember feeling a mixture of adrenaline and anxiety, more adrenaline though. I had faith in the doctors and hope that Sam was going to be okay! We just had to stay patient, focused and positive.

Generally I think we coped amazingly and that this wait was possibly the easiest so far. We knew the expected timeframes, we were familiar with the environment and we had trust in the team but we also knew that the anxiety of the last couple of hours would start to eat away at us. Thankfully, as we got on to the ward, we were approached by the Cardiac Liaison Nurse who told us that they were just finishing off with Sam in theatre and that they would call us within the next 30-60mins. Wow – it was only 11.45am! So as we waited, we waited with a little more ease, watching the live parliament debate on bbc1, which was surreally taking place just across the river. It was approaching 1.15pm and we knew Sam should be settled in PICU by now, why hasn’t they called? maybe they have had trouble stabilising him? No there’s probably a good reason for it but I couldn’t wait any longer, I asked the ward clerk to call down and was told that they had a hold up in PICU (not Sam related) and we could make our way down in the next 10-15 mins, we grabbed a coffee and headed to see our brave boy!

All was well when we arrived, we’d just missed the cardiologist but one of the PICU doctors filled us in. All had gone to plan and Sam was already waking up asking for mummy and daddy. He was so much more ‘with it’ than I’d expected him to be. He wanted what he always wants- milk! He wasn’t allowed any fluid just yet so I made an excuse up and told him we needed to buy some from the shop, in true Sam style he replied ‘I want to come mummy’. He still had his breathing tube in, three chest drains and several lines feeding him different meds – he wasn’t going anywhere just yet bless him.

It must have been such a shock to wake up like that. He was too young to fully understand what was happening but he understood to a certain extent, and that was clear in the way he listened and behaved when he had to have painful things done to him. He was so strong and would endure things that you could just not imagine!

Within a few hours and after several tubes/lines removed, Sam was propped up in his PICU bed watching Peppa Pig. He was still a bit out of it and would doze in and out of sleep. It got to 1.30am and I was literally falling asleep on my chair, Sam wasn’t really settling and the nurse said that we should go to bed and she would call us if he was upset. I was so pleased when I came back at 6am, she said he’d slept straight through after we’d gone and had only just woke up asking for mummy 10 mins before I arrived.

Later that day, Sam was well enough to be moved to the ward where we stayed for another 7 days.

Generally Sam recovered well, although it was extremely tough for him especially with managing his pain in the first few days. Getting the timing right for removing his drains was a challenge for the doctors. If taken out too early, it ran a risk of a fluid build up and would result in another surgical procedure to re-insert the drains. If left in too long, the risk of infection is higher. Sam also needed antithrombin injections due to a blood deficiency he was recently diagnosed with. This made his blood very thin, and he was suffering regular nose bleeds. There came a point where Sam had just had enough, and he refused to let anyone near him and wouldn’t take his medicines. This was the hardest part for me, I could see that he was fed up and in pain, I just wanted him to get better! Sam enjoyed a visit from his Auntie Sarah, and then his Nannan and Grandad came with Emmie, he really benefitted from the visits and especially from having Emmie there. She really cheered him up and I believe that she played a big part in his quick recovery. She would encourage him to eat and also get out of bed. Emmie did struggle to deal with it all though and I felt so bad that I couldn’t give her my attention. I had to concentrate on Sam, he was my priority and it was so difficult to spend any time mentally or physically with Emmie. Rich was fantastic! He made Emmie feel extra special and treated her to a lot of daddy and daughter time, having evening boat rides and meals out. Around me, she was very quiet at first and I think she didn’t really know how to act, she knew that Sam needed mummy but I could tell she’d really missed me. She wasn’t herself and misbehaved a little in the hospital but again I just think she didn’t really know how to behave in such a strange and anxious environment. Thankfully, this only lasted temporarily and things got back to normal at home.

As soon as Sam’s drains were removed on the Tuesday, he was quickly becoming his old self, walking around the ward entertaining staff by wearing a sick bowl as a hat and covering it in stickers. By Wednesday- 7 days post op, we were allowed to take Sam out of the hospital. We couldn’t believe the change in him! He hadn’t eaten properly in days nor taken any meds, but as soon as we mentioned going to macdonalds, he couldn’t swallow his meds any faster. He ate all his macdonalds, even dipping chips in his icecream! Amazing!

The next day – 8 days post op. We were discharged home! So surprised by how well he’d done, we got in the car and drove home (forgetting to pay the congestion charge)!

Sam had his follow up on the 15th of December, where Dr Bell confirmed that his surgery had been a success and that his heart was functioning well.

Plans for the future are to monitor him on a 4-6 month basis until next year where he will go to annual check ups!!

I can’t believe the 3 years has passed and that Sam has gotten through it! Remember when Doctors told us that Sam had a 50% chance of making it to the age of 5? Well that figure is now around 99.9%!!

Unfortunately, there are many little ones that haven’t been so lucky and are still battling to get through it. My mind is never far away from the families and children who are still fighting.

Looking back over the past three years, and revisiting some of my posts, it’s really hard to see how we got through it at times. We have been so blessed with this journey, blessed by Sam and amazed at the lives he has touched.

Every moment I am thankful for what God has given us.

‘Samuel’ meaning ‘God has heard’

He certainly has.

Xxxx

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Faith in the future

When you are told that your child may not survive and you witness so many children with a similar diagnosis who sadly don’t make it. It’s sometimes hard to fully believe that your child will be ok. At times, it’s hard to believe that you will even take your child home from hospital, let alone thinking of his or her future.

Will they go to school?
Will they live a normal life?
Will they get married?
Will they have kids?

It’s a dream that you almost daren’t dream, a dream that can make your heart ache when you come back to reality. Often your mind goes in to defensive mode and you can only take each day as it comes.

But why is it so hard to believe? Why does it hurt so much to believe?

I have been struggling with this recently and in my last post I spoke about what dreams are made of.

I have many dreams and at the moment it is that he makes it through the next stage of surgery but my biggest dream has always been to dance with Samuel on his wedding day.

I wish to share with you something quite personal. It’s a prayer I just started writing down when I was feeling rather down and hopeless, it was when we found out that Sam would be having his surgery within the next few months and it was quite a hard time. So I found myself writing down questions, and as I finished each question, I immediately found myself writing the answer as it quietly entered my thoughts. It was rather amazing and believe what you like, religious or non religious, it was exactly what I needed and allowed me to grasp that much needed Hope and Faith that I desperately craved for.

So here goes:

My head is pounding and my muscles ache. Help me Jesus for my child’s sake. I need to be fighting fit to prepare him for battle, I need to be there to hold him, to encourage him, to tell him all will be ok.
So please my heavenly Father, I ask You to do the same for me. I need your help as my child needs mine. I need your love, your strength and your peace right now.

Will all be ok? I ask.
Yes, God says.
But I’m so scared that it won’t be.
Do you believe in Me?
I do, but I am still scared…
Do you trust Me? God asks.
I do, I really do try…. I whole-heartedly trusted You before when I was pregnant with Sam, I put my everything in to believing he would be born ok.
And he is ok? God replies.
Hmm… Yes he is, I remind myself.

I then remember that God never promised it would be easy, but He did promise to be there. “It’s in His Hands” I would always remind myself. That is Faith! God rooted the strength, peace and hope within me. He was with us each step of the way.

Sometimes when you are thrust back in to the reality of this journey and you have to face the monster of surgery again, it’s easy to forget how far you’ve already come and how you managed to get through it before.

I am learning to grab hold of that Faith again and trust that Sam will get past this next hurdle. I have peace in my heart again and believe that Sam will not only survive his next surgery, but his heart will recover well, he will go to school, he will grow older, he will live a happy life, and… my biggest dream for Sam… I will dance with him on his wedding day!

Sam has his final stage of open heart surgery on the 5th of November 2014. This will be the completion of the Fontan.

Love, prayers and thoughts will be gratefully received.

I will update you again as soon as I can.

All my love,
Rachel (Sam’s Mum).

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Saving babies lives

This article was published in the Evening Standard London as well as our local paper, it also appeared in the Evelina’s ‘Together We Can’ magazine.

Very proud that Sam has played a small part in such a massive breakthrough for babies going home after the Norwood.

Saving babies’ lives…

Parents of babies who have had heart surgery are being taught simple medical knowledge in a bid to save lives.

Evelina London Children’s Hospital has launched the country’s first trial of a home-monitoring programme for babies with serious heart conditions.

Babies born with hypoplastic left heart syndrome – where blood cannot flow properly through the left side of the heart – need three operations in the early years of their lives.

Dr Owen Miller, consultant cardiologist at Evelina London, says: “Up to 10% of these babies sadly die without warning after the first operation because the condition is so serious.”

The ‘home-monitoring programme’ teaches parents how to monitor their babies after they’ve been discharged from hospital, meaning they can alert the hospital as soon as they notice any abnormal changes.

Dr Miller says: “We discharge the babies when they have recovered and are well after surgery. However, their heart condition means they can have breathing problems and can sadly die without any obvious signs.

“By simply educating parents and giving them simple equipment to measure their child’s vital signs, they can tell if something is wrong before it’s too late. We hope it will save lives.”

Parents are given the equipment they need to monitor their baby’s weight, oxygen saturation levels, heart rate and fluid intake which they can then record daily in special diaries.

Nurses on the wards train parents how to use the equipment, and a team of nurses visit the families in their homes.

A dedicated phone line means parents can speak to a nurse at the hospital at any time if they are worried. Dr Miller adds: “Even slight variations can increase the baby’s vulnerability.”

Sam’s story
Parents of Sam Davy, now two-years-old, think that the programme would have made a real difference to their experiences after he had heart surgery at Evelina London at 13-days-old.

Mum Rachel says: “We spent nearly six weeks in three different hospitals, all in which Sam was closely and continuously monitored.

“By the time we were allowed to go home we were overwhelmed with emotion, we were both elated, but then extremely nervous to be leaving the safe environment at Evelina London.”

Rachel and her husband were advised to look out for signs that Sam wasn’t himself, “but we barely knew him”, she says. “He was five weeks old so we didn’t know what was ‘himself’ at that point.

“The first few months at home were extremely hard. We tried to stay positive and do our best to help Sam thrive but in all honesty we were just living in hope and desperate to get to the next stage of surgery.

“It was a very stressful and exhausting time for us and when Sam did make it to the second stage and he recovered very well, we felt like a huge weight had been lifted from our shoulders.

“Having the training and medical equipment would have given us more control, more understanding and that reassurance.

“As a parent I would rather have the security, the control and the understanding of my child’s condition than to be second guessing his medical state.

‘If this programme is proven to save lives and it alleviates the pressures that we feel as parents then it’s a programme that is so desperately needed and welcomed.”

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