After fighting off a staph infection and adenovirus for 3 weeks Romeo was finally ready to get his permanent pacemaker fitted. Genetics and Neurology had requested an MRI of Romeo’s brain under the same anaesthetic to take place just before his pacemaker as once this is implanted he would never be allowed an MRI due to the magnets interfering with the pacemaker.

Romeo was first on the list for the day, with all the madness of Coronavirus we weren’t sure if Daddy would be able to see him before hand as the ward had restricted it to one parent only by this point. Luckily the nurse in charge allowed him and we are so thankful as this was his riskiest op yet; carrying a 5% risk of sudden death, major organ damage and stroke.

The minutes were ticking by and finally the cardiac anaesthetist came over to see us, he told us they were discussing Romeo in the MDT meeting that morning as the general anaesthetist was not comfortable with doing the MRI due to Romeo’s previous episodes of complete heart block. It was frustrating as this was our only chance to really get a better understanding of Romeo and his developmental delays and seeing the impact his lack of weight gain is having on his brain however I was happy that they were honest with us and if they weren’t comfortable doing it then we weren’t either, it’s not worth the risk. They told us if he went into heart block whilst he was in the imaging unit they would not be able to get him out in time to resuscitate him which just doesn’t even bare thinking about.

He finally went down to theatre about 10am, we were both with him when they put him to sleep. The hardest part of that was watching them put the defibrillator pads on him, they obviously were very concerned as to how Romeo was going to react to another anaesthetic and it immediately took me back to that day that his heart stopped in my arms. As the gas started working it’s magic I was warily looking at the screen just expecting the numbers to start plummeting however Romeo was on his best behaviour and went down with no issues. The surgery itself was about 4 hours and we got the call to come back up to the ward to speak to the heart surgeon. He came into the room smiling and we knew he was fine, he had no funny heart rhythms the whole time which was such a relief. We went down to see him in PICU an hour later and later on that evening he was extubated and moved back up to the ward the next day.

The surgery was a full sternotomy again opening up the old scar Romeo had from his first heart surgery, the device itself is 2 x 4cm and is situated on his right hand side below his ribcage. Due to Romeo’s size it’s fairly noticeable through his skin but hopefully as he gets bigger and the pacemaker settles in more you won’t be able to notice it.

I’m unsure as to whether Romeo has even used his pacemaker yet, we are due our first virtual pacemaker clinic next month so I will get a better understanding then. Initially I had an app on my phone which connects by Bluetooth to his pacemaker but that wasn’t working properly so they sent us out a box which records all the data and we can transmit to the clinic. His rate is set at 90bpm so any time his heart rate drops below that it will send a little shock to the heart to put it back in rhythm. Hopefully the battery should last around 8 years before it needs replacing.

We are so thankful Romeo has his pacemaker, it’s his safety blanket and should he ever have any rhythm issues again this will save his life. And once again we are incredibly proud of Romeo, this was his 4th surgery and he recovered amazingly well and finally 5 days after his op we were discharged from hospital.

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