We spent just over 2 weeks in PICU after we got told Romeo was palliative, during this time they arranged for us to go to Peppa Pig World with all of our family which was just the best day ever. Romeo stayed awake the whole day, didn’t cry once and just enjoyed every moment we were there. We are so glad we got these special memories with him that day, I have the sweetest video of him all excited in the ambulance kicking his legs the whole way there, he must have got back to PICU and thought it was the most boring place ever as he was so stimulated. We were also finally able to take Romeo off the ward on our own, we would take him for walks around the hospital, to the gardens, over to Ronald McDonald and every couple of days we would take him to the sensory room, as he was still on the milrinone and at this point he was in the best mood he’s ever been in, it was so amazing to see and we managed to capture some really lovely moments of us together as a family.
There were quite a few things that needed to be sorted to enable us to take him home, he still needed bi-pap at night time so they had to arrange the home ventilator and training for us, he was also coming home on a lot more medication than he had previously, some of which had to be ordered in specially for him. As he had been dependent on Milrinone for 4 and a half months we couldn’t just wean him off this, they arranged for him to go onto an oral version called Emoxinone, it wasn’t as good as Milrinone but the closest they could get for us to go home on, this drug helps with heart function. During the switch over on to this Romeo had to be monitored, it’s not a drug that is used very often and they had to get advice from another hospital in the UK as they had never sent someone home on it before. They also discussed Romeo’s pacemaker with us, initially they wanted to switch it off completely but we weren’t comfortable with this, he was the happiest and healthiest he had ever been and we weren’t ready to lose him if he just had an arrhythmia, we agreed they could reduce the back up rate down to 50bpm and I’m so glad we did as it turned out Romeo did suffer with quite a lot of arrhythmias.
On the 17th of May 2021 we were transferred from PICU to our local hospice, this was an emotional day and felt like the end of an era knowing full well we would never be coming back to Southampton with Romeo. We were happy it was finally one step closer to taking him home for good. We only spent 2 nights here, it was a step down from hospital to get us used to being in complete charge of his care but we were ready and fully capable and decided to leave early so we could finally see all our family again with Romeo with no restrictions in place.
Taking him in the car ourselves for the first time in 5 months was just the best feeling, when we finally got home and took him into the house he seemed quiet and subdued just taking it all in, he knew it was home and recognised it but it had been such a long time for him that I think it took him a while to adjust to the fact that he was finally back now. The first couple of days at home were so amazing, he still had the effects of the Milrinone in his system and was just the happiest, he had so much fun playing with his sister and cousins and for a while you would almost forget that he was palliative, he seemed so healthy and perfect it just didn’t seem possible that he was terminally ill.
There was an awful lot of admin that came with palliative care, lots of medicines needed arranging between our gp, pharmacy and hospital. We had weekly visits from the community nurse to take Romeo’s bloods, change his dressings and to monitor his condition and monthly calls at first with our palliative care doctors. We also had 6 weekly home visits from the GP and meetings with the agency that was putting our package in place for overnight care. I was on the phone near enough every day speaking to some kind of medical person but this didn’t hinder the time we had together, we felt more support than we had ever experienced with Romeo and all the teams we had in place were amazing and went above and beyond for us.
After about a month our care package was put into place and we started with 3 nights a week, initially they wanted 5 but it felt like overkill as we wanted to provide him with as much care ourselves as we physically could. A lot of his nurses from PICU joined the agency and it was so nice having people we knew and who knew Romeo in our home caring for him overnight.
Romeo had a few infections in his time at home which we had to take him to hospital for antibiotics due to him having a central line but as he was now palliative I made sure that the hospital never kept us in overnight, we were at home now and there was nothing that was going to separate our family unit.
Towards the end of July it was apparent that Romeo was deteriorating, his mood just generally seemed lower, he was a bit more breathless and tired than before so it was agreed with palliative care that he would be started on morphine. That first day I just remember feeling so upset, we had spent months in hospital weaning him off morphine and now here he was straight back on it but knowing that this was it now and he would be on it for the rest of his life. We started having calls with palliative care every other week which soon became weekly, more and more drugs were being added to manage Romeo’s symptoms and less and less milk was being given to him due to his gut slowing down. His mood was getting worse due to lack of oxygen flow to his brain so we started getting deliveries of the more controlled medicines. Unlike in hospital where you have doctors and nurses on hand to agree to administer drugs it was now all our judgement. We had to decide when we thought he needed something stronger. One weekend he seemed to be struggling, his mood was extremely bad and he was almost inconsolable, it was on his symptom management plan to administer midazolam when he got like that, we had spoken to the doctors and nurses lots about it previously and had tried putting it off for as long as possible but it was apparent he needed it now. Unfortunately I read the bottle wrong and gave him 10 times the amount he should have had, I noticed my mistake straight away and called the hospital for advice but it was just a wait and see how he responds situation. He had previously had much higher doses than this in hospital so it wasn’t overly dangerous for him but it was still terrifying for me and I felt awful for doing it.
During our time at home we tried to make as many memories as we could, we took him to the aquarium, we would take him to feed the ducks, spend time with our families and go for little car drives which he loved. We also managed 2 little breaks, we were due to go to a caravan park in Wales for a week but typically the day before Romeo woke up with a temperature. The hospital knew how important it was for us to get away as a family and put him on oral antibiotics so we could still go. Unfortunately the oral antibiotics just didn’t shift it for him and after a day and a half we made the decision to bring him home to have IV antibiotics. His health was more important. We then had another week at The Bluebells, our favourite place to take Romeo. They have lots of amazing facilities but our favourites were the sensory room and swimming pool. Our nurse agreed to meet us there one day to change his Hickman line dressing so we could take him swimming which was so special for me, I loved taking him swimming and to be able to do it one last time meant the world to me.
A week later in August just after his nurse had left one morning my waters suddenly broke 3 weeks early, I had polyhydramnios so there was an awful lot. I was stood out in the garden in the start of labour calling around everyone involved in Romeo’s care, even then he still came first. We had a backup plan of getting a 24 hour care package in place so he could stay at home but that was due for 2 weeks later when I was supposed to be induced. We arranged for him to go to the hospice for a couple of nights, this was the longest time I had ever gone without seeing him in my life, it was only 48 hours but I had spent every day of his life with him and having no choice but to leave him with someone else broke my heart. The hospital were great and knew our situation so made sure that once Lucia was here and we were both okay that we would be the first to be discharged so we could go and pick up Romeo. I’m so glad she did come early so she could meet her brother and spend time with him even if he wasn’t that interested in her at first.
It was a big adjustment having a new baby in the house whilst caring for a terminally ill child, as I was breastfeeding Lucia it made it harder for me to do as much of his care so during this time Jimmy had to do most things for Romeo now. At times I felt so much guilt, he would hold his hands up to me and shout for me but I couldn’t pick him up as much as I wish I could. From here on our care package started increasing and we soon went from 5 nights a week to 7 nights a week.
Romeo had started suffering from funny spells, these were basically arrhythmias. He would have them randomly the first one we noticed was during a bath one night, other times they coincided with medicine and sometimes they would come on if he was really upset about something. He would go clammy and pale and we could spot them straight away. We spoke to the consultant who warned us that these could be deadly for him and one day he might not recover from one which was horrifying.
Watching him deteriorate over the next couple weeks and months was torture and now that looming feeling of coming to terms with his fate was hanging over us. He was tiring a lot more and spending less time awake, his mood was generally lower and leaving the house with him was becoming more difficult as he just wasn’t up for it. I remember the start of September I had a conversation with his nurse and I asked her do you think he will make it through the month and she said sadly, “honestly, no”. This was heartbreaking but deep down I knew it myself, I could see it. I had started googling signs of death nearing, reading everything I could just to try and prepare myself.
September 19th 2021 – the day I thought I was going to lose him. The GP had just been round to observe him and he definitely seemed a lot worse than the month before, his colouring was awful, he was extremely lethargic and breathless but the thing that really struck me was that the sparkle in his eye was nowhere to be seen. He just looked vacant and like he had had enough. Our community nurse came over shortly after to drop some meds round and she was immediately concerned, she could see it to. He wasn’t right. We had a zoom call with the palliative doctor at the drop of a hat to discuss what was happening and how he was. I asked her how long we had left and I remember her saying if he’s deteriorating in days it’s weeks, if he’s deteriorating in hours it’s days and I remember just thinking he was getting worse by the hour. I was convinced he was going to die that night. I was petrified, I think even the nurse on that night was worried, but soon enough morning came round and he was still here, he still wasn’t great but he was here. In my heart I thought this will be the night he passes away. All our family rallied round us that weekend and the house was never really empty which to be honest I struggled with. I was scared that this was going to be my last day with him and I didn’t really get a moment to myself with him. I remember laying with him in his bedroom and saying to him if you’re ready baby you can go, I didn’t want him to suffer anymore. His body was tired. He was tired. Our care package had only just increased to 7 nights and they were struggling to get a nurse to cover that night, eventually they called to say someone could come but I declined. I thought this was going to be our final night together so we put his mattress downstairs, we set up an air bed next to it and the 4 of us all slept downstairs together as a family, not knowing what the night may hold. Then morning came round again, and he was awake, he was alive and he was almost back to his sassy self shouting at us to fill up his water bottle. He came so close but he wasn’t ready. Day by day he got better and that sparkle in his eye returned.
Knowing how close he came that weekend we soon realised that if he ever got poorly like that again then he wouldn’t come back from it. We now knew the signs and it made us appreciate every second, minute, hour of the day so much more. October came round and weirdly I didn’t feel that sense of dread I felt in the beginning of September, I felt confident in Romeo and his strength. He was now sleeping 20 hours of the day but when he was awake he was playful and chatty. We were looking to the future again and thought maybe he would make it till Christmas, little did we know we only had a matter of weeks.