Just a cough is what we all thought. Why could it anything more when just a few days ago he was running around with his 3-year-old. A cough that didn’t want to budge even with antibiotics and cough medicine.

This forced us to A&E, several tests were done at the local hospital, final tests showed blood clots within the heart. He was then taken to a specialist London hospital ICU. They fought to keep him stable as his condition was deteriorating.

After a few days they told us it was heart failure and that’s all we would know until they had him stable. After a long journey in the London hospital, it become clear that they didn’t have the skill set to save him and it was clear that he needed a specialist cardiac hospital. This is when Harefield opened their arms and took his case on. This is where the major life changing opportunities started but we weren’t to know how much of a rollercoaster he was going to be on. He started his journey on Rowan ward on a Monday, they did everything they could to make him and supporting family feel comfortable with keeping him in their care.

Tuesday we had consultants come round and talk about their plans. Thursday, they decided to take him for a heart catheter and CT scan, from these tests Rowan ward wasn’t the best place for him and he was admitted to ICU. Friday was the start of something new he was taken for an emergency operation to fit a BiVAD.

Bit of an insight to what a BiVAD is; this is a mechanical/electrical device it is a pump that is fitted over the heart to take the strain of the hearts work off. 4 tubes 2cm in diameter to take oxygenation blood and deoxygenated blood around the body, these tubes come under the rib cage and out of the body. Into a machine that is quite intimidating when you first set eyes on it due to how big it is, and it being plugged into the mains.

He was sedated after the operation, and they kept him sedated as he had to go back into surgery on the Saturday for a bleed. When he finally came out of sedation, he was fine in bed resting. Wednesday, he had physiotherapy come and get him out of bed. He marched on the spot, and we all had very high hopes everything was going in the right direction. Thursday was day the everything come crashing down.

We phoned for a check up on him and was asked “Are you coming down?”. They kept me calm the whole way to the hospital. Barking - Harefield. It wasn’t until we reached the hospital, that we were made aware how serious he was.

Phone calls to the family were made and everyone made their way to Harefield. We were made aware that his condition had deteriorated so much that they had to crack open his chest and operate bedside as they didn’t have time to go back to theatre!

They left his chest open so they could see what was going on, but they kept his dignity by covering him. Sitting beside when alarms started buzzing and going mad, he was in cardiac arrest for the 2nd time. THEY SAVED HIM TWICE!

He wasn’t ready to leave his family and he showed his strength throughout it all. Friday he was back into surgery for a washout. Fast forward to Monday he was back into theatre for a bleed and his chest was closed up. He was woken up on the Thursday from sedation and was awake under light sedation until Sunday when he went back into theatre for a blood clot blocking the BiVAD. Back in again on that same day for a bleed and chest was left open again. Monday he was taken back into theatre again for, yet another bleed and his chest was still left open. Wednesday he went back into theatre again and they finally stopped the bleed and closed him up.

Friday 23rd December. He woke up. After waking up he was still on a ventilator for a few days before they decided that the best option for him was to put a tracheostomy in. He had to go back to surgery 1 more time for fluid round his lung, he started physio again to regain strength. They came and had a chat with us on Tuesday 10th January 2023. They told us they were going to TRY and get him on the transplant list. We had to sign some forms and had a chat with the transplant coordinator on the Wednesday and that same day they told us HE WAS ON THE LIST.

FRIDAY 13th we was told late evening that there was a possibility of a heart! Little did we know that 6. O’clock Saturday morning we would be woken up with “He’s going down to theatre, we have the heart”

We are still on a rollercoaster and will update this throughout our next steps and journey.

Samantha Truby