4 days into the new year and Romeo was admitted to hospital again with worsening heart failure. He was extremely puffy all over due to fluid overload and was kept in whilst they adjusted his medicines and kept an eye on some arythmias he was having. This worked in our favour as it hurried up his long overdue operation for his stoma reversal, peg and skin biopsy. After a couple of days in hospital we were discharged for a week before we were due to come back in for his surgery. His cardiologist had decided it was best to admit him a couple of days before so that he could be started on Milrinone to help with his heart failure and to give him the best chance possible as this surgery was extremely risky due to his poor heart function.

20th of January was the day of surgery, originally he was on the afternoon list but there was a lot of different procedures he was going to be having all at once and due to him being so risky they wanted to get him done first. Although this wasn’t cardiac surgery he was so high risk that he had two senior cardiac anaesthetists looking after him. The night before Romeo’s consultant had come to see us and explained that due to his heart, the risks involved and Romeo’s poor overall prognosis that a decision had been made that if anything happened to Romeo during surgery they would resuscitate him but they would not offer him ECMO. This was a devastating blow as this made this surgery even scarier but we had no choice but to go ahead with this so that once and for all we could finally move ahead with transplant. That morning we both walked down to theatre with him and the anaesthetists let us both stay and kiss him whilst he was going under, once again they promised to take good care of him and they did. Within the first hour we had a phone call to say that he handled the anaesthetic well and that they were about to start the list of procedures. He was in surgery for about 4 hours in total and we were finally able to go and see him in PICU. To both of our surprise he was already extubated and awake.

He spent one night in PICU and the next day was taken back up to the ward, it was the biggest relief knowing he had made it through this surgery. We’ve had a lot of conflicting opinions from different doctors telling us he would not survive this op so to have him back on the ward safe was the best feeling. Unfortunately within 24 hours we were brought back to the stark reality of how ill Romeo could be. It was decided that night that he would be admitted back to PICU; where we still are 3 months later.

Over a couple of days it was clear he was declining, his oxygen requirement was getting higher and higher whilst he was working harder and harder to breathe. Within 3 days he ended up on the ventilator. This was the start of our nightmare. The day after he was ventilated it became apparent that Romeo was in big trouble, he had sepsis. Looking back now it almost seems a blur, so much happened it’s almost hard to remember but visually it was very apparent that every organ in Romeo’s body was shutting down. He swelled up like a balloon due to his heart and kidneys failing, his skin yellow and translucent as his liver was getting worse and worse. They were getting the blood ready to put him onto dialysis as by this point his kidneys had started completely shutting down.

You don’t realise at the time but all of a sudden there is a box of tissues next to you, you never noticed them before. The consultant is asking you to come to a room so they can talk to you. The kind of room you know exists but you never think you will find yourself in. Strategically placed sofas, a box of tissues on the table, posters on the wall very fitting with the conversations you know you’re about to have. They told us that this was probably it, they were getting ready to put Romeo on dialysis but the chances are he wouldn’t survive, they would arrange for palliative care to come and speak to us about our wishes. At that moment then the ground swallowed us up whole. We took a moment to process everything that had just been said to us, we sat and cried and spoke about how we would want to proceed. Conversations you think you will never have as parents. We had it all planned out, we shouldn’t have to but we did because this was now our reality.

I’ve always said Romeo is a cat with 9 lives, I’m sure he can sense when we’re having awful conversations about him. By some miracle shortly after that meeting with the consultant Romeo’s kidneys started working again, it was slow, really really slow but it was progress. His urine output was 5mls an hour, a couple of hours later it was 10mls. We never in our lives thought we would be so obsessed with a catheter and urine but this liquid was like gold to us, this was our hope. Our baby was there fighting, he wasn’t ready to give up. He was still very critical and it was very much a case of taking it hour by hour. The next day it was decided that we would get him baptised and also palliative care arranged with the ward for his sister to come visit him. Despite the situation we had a lovely afternoon memory making and doing handprints. He remained very critical for the next couple of days on every inotrope going. He had more infusions and lines coming out of him than I thought was possible but day by day he slowly started getting better. He showed us all what a fighter he is.