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.