It’s been a long time since I’ve updated this blog, mainly for a good reason as Romeo had a really long run of good health. 7 months without a hospital admission, he had seemed the best he had ever been although looking back at pictures of him now I can see that actually he looked very sick and had been deteriorating over time.

December the 18th started as any normal day, he seemed his happy and cheeky self and gave us no cause for concern. It was his sisters last day of school and we were excited to go and pick her up with him ready for a couple of days of Christmas fun at home. Myself and Romeo stayed in the car whilst Daddy collected her from the playground, they had an assembly that over ran so were taking a bit longer than usual. Romeo started getting unsettled in his car seat so I jumped in the back and gave him a cuddle, he seemed to get really hot so I took off his hat and jacket. He was unusually upset, something didn’t seem right with him. As I put him back into the car seat he made a scream that I didn’t recognise; I had never heard this noise come from him before. Immediately I sensed something wasn’t right. I jumped back in the drivers seat whilst his sister and daddy got back in the car. I was driving home fast, I could just sense there was something wrong with him and I needed to get him back home to assess him. I hurried us all in the house, Jimmy had Romeo in his arms. As soon as we walked through the door I asked how is he and I noticed that he was completely floppy on his right side, I immediately shouted he’s having a stroke. Jimmy told me to call an ambulance straight away. I’m normally so composed in medical situations with Romeo but this one completely blind sided me, he was fine this morning, how is this even happening? I was stood in the garden on the phone to the ambulance screaming for them to hurry up, collapsed to my knees begging for them to get there as soon as possible. I probably didn’t even make any sense to them but I was in complete shock, we all were.

The ambulance arrived quickly, I explained he was having a stroke, he was overdue a prescription of aspirin as he was high risk for blood clots due to his restrictive cardiomyopathy. We were blue lighted to the hospital but unfortunately this is where the urgency seemed to end. Maybe I didn’t make it clear enough, maybe they’re not used to seeing babies having strokes, maybe I wasn’t assertive enough either way after being blue lighted to hospital in 3 minutes it took 3 hours for a doctor to assess Romeo. Luckily by the time a doctor came to asses him he started to regain some movement in his arm and leg. He had a CT, Angiogram and and Echo but they could not find a blood clot anywhere so it was decided that he had a mini stroke. He remained in hospital for a couple of days and started on his overdue prescription of aspirin, thankfully he regained full movement after this event.

I would love to tell you that this is where the story ends when it comes to his stroke but unfortunately not. Unbeknown to us this mini stroke did in fact damage his brain, he has a small area of scarring on this part of his brain which affect the movement in his right limbs. After being discharged from hospital just before Christmas we thought things would go back to normal but this stroke was just the beginning of Romeo’s decline in health.

In the next post I will go into our journey in intensive care but for the purpose of keeping this post about his stroke we will fast forward to the early hours of St Patrick’s Day otherwise known as Daddy’s birthday. Romeo was already intubated at this time, he was due to be extubated on Daddys Birthday but unfortunately we were woken by a phone call from PICU. Romeo has had another cardiac arrest.

We went over to the PICU to see Romeo straight away, they had resuscitated him and sedated him further. I don’t think the doctors had noticed as they were more concerned about his heart rate and blood pressure but as soon as I saw him I could see that his right arm and leg weren’t moving again, once again they were complete dead weights. You could lift them and gravity would take over, he had no control over his limbs even just a cough would send them flying in the air almost like a puppet on a string due to him having no control over his reflex. We were hopeful this was just another mini stroke and that by the morning he would have regained movement. Morning time came and he was exactly the same, no control whatsoever. I started getting concerned now, last time he had regained movement within hours; 8 hours had passed and still nothing. They had arranged a CT scan to have a look.

A short while after he came back from CT the neurologist came over to see me and explain the findings from the scan. She had his previous scan from December on the computer to crosse reference with this one. On the scan from December she showed me a small area of scar tissue, to the untrained eye it would be impossible to see but as they know what they are looking out for she managed to point it out to me. On his latest CT she showed me the same area of brain but this time the scar tissue has expanded and changed colour. This is the area of his brain that was affected. Unfortunately there is no way to tell whether it would be lasting damage, it was a case of wait and see. It also put him at higher risk of this happening time and time again.

Nearly one month on from this latest stroke Romeo still does not have full movement back. His leg moves quite freely and his arm is gradually moving more and more, the main issue now is his hand. He doesn’t have any strength and has lost his grip. His left hand is his dominant hand now and he will use this all the time. It’s heartbreaking watching him and his lack of confidence with this hand now, he was always playing and inspecting toys with both of his hands and seeing him lose that is difficult.

For a child his age his brain is still developing, this part of his brain may not work properly at the moment but they are constantly evolving and creating new pathways to learn how to do these things again. We are hopeful though that with time and physio he can start to regain this strength and grip.