PICU was Romeo’s home for 117 days, this place will forever hold a special place in our hearts. Despite all the scary times, devastating conversations and just witnessing our little boy go through so much in there it felt like home to us and we made so many happy memories with Romeo there when he seemed his healthiest thanks to the magic wonder drug Milrinone.
I think in total Romeo was intubated 7 times in PICU, it was a long road with lots of ups and downs, he nearly left once but ended up with recurring infections and had to stay. He moved beds 8 times in there we often joked that he was going to try out every bed space. We were willing to spend over a year in there, however long it would take to get him a new heart. Gradually we started moving more of his stuff in there, toys, clothes, books, his playmat; making it more homely for him and he loved it. The nurses would fight over him at handover time and even if some of his favourites didn’t get to look after him for their shift they would be sure to come over, say hello and check on him.
From January to April he was very poorly, he had operations for his Hickman line, muscle biopsy and lumbar puncture. One day we were taken by complete surprise when the doctors came over during handover and told us he needed intubating again as his work of breathing had increased from another infection, this was the last ever time he was intubated but the scariest. They gave us 5 minutes to kiss and cuddle him whilst they sorted out all the trolleys but told us he may not handle it, this was terrifying and we were taken to the parents room to wait for an update. Luckily he handled it better than they expected and he spent the next 7 days on the ventilator, we were getting prepared to extubate him on the 17th of March which also happened to be daddy’s birthday but that night we were woken by a phone call in the early hours, Romeo had suffered a cardiac arrest. We rushed back over from Ronald McDonald to see him and I could tell straight away he had had another stroke. His central line had somehow fallen out of his neck so they had to anaesthetise him to put another one in which caused him to arrest, it was apparent from this that he probably wouldn’t have handled any more anaesthetics. The next day was torture, he was stuck in a prolonged SVT with his heart rate continuously stuck at 160bpm, baring in mind his resting heart rate should have been about 90bpm. He wasn’t regaining movement in his arm and leg and it was one of the worst days in there watching him struggling. He stayed on the ventilator for another 7 days after this and during this time he was moved from a cot to a bed so that we could lay with him.
When Romeo came off the ventilator this time he was so different, we finally started seeing his personality shine back through, he seemed so much happier and healthier. We brought his bath in from home and once his femoral line was removed we could give him his first bath since January which he absolutely adored, he gave us the biggest smiles which we hadn’t seen in months. It was incredible and a real turning point for us. From then on he had daily baths in PICU which everyone loved watching and it was often our favourite part of the day. It took a long time to get the movement in his arm and leg better but he was now able to play and roll around like he used to at home. The nurses would take him for walks around the unit and everyday he would go and stroke the elephants at the entrance of the ward, this became his daily ritual.
We celebrated Easter, one of the nurses had arranged an Easter egg hunt around the ward which he loved. The next day was his 2nd Birthday and the staff made it so special, they decorated his bed space with bunting and balloons and one of the nurses made a delicious cake for us all. 2 days later we then celebrated our Wedding at the hospital chapel which really was the most magical day made even more special having Romeo there with us. We could never thank all the staff in there for all the amazing memories they gave us and all the times they went above and beyond for our family.
Romeo was finally getting better day by day and we could start taking him for trips off the ward to the coffee shop or gardens on the hospital grounds, he had so much wonder in his eyes and it was beautiful just spending time in the fresh air with him. In the background there was a lot going on, we had asked for a second opinion from Newcastle with regards to listing Romeo for a transplant and we were anxiously awaiting results from his muscle biopsy to find out whether he would be a suitable candidate.
On the 30th of April we finally had some answers, but not the answers we wanted. Although his muscle biopsy had come back clear for mitochondrial disease the transplant team at Newcastle had decided that Romeo was not a suitable candidate for transplant and there was nothing more that could be done for him. Our hearts completely shattered knowing that the only thing that could save him was no longer a possibility. Our baby was now palliative.
In hindsight this was probably the best decision as much as we wanted him to have a chance at life realistically Romeo wouldn’t have survived another year in hospital, he would have suffered unnecessarily and that is selfish of us for wanting to put him through it knowing that we never would have got the right outcome. As much as I wanted to keep fighting back then I am so grateful that we did eventually take him home; no more suffering for him, surrounded by love with his family as he deserved and slipping away in the comfort of his own bed.