Harrison's Second Heart Surgery (2000)

Harrison had a frustrating habit of becoming unwell a few days before or even the night before a scheduled surgery. It’s a surreal feeling when you‘re waiting for your child to deteriorate sufficiently to qualify for the next stage of surgery to improve their quality of life. Until you receive the date, you try to carry on with your usual routine, doing your best to balance developmental and socialisation opportunities with protecting them from infections and viruses which invariably lead to further hospital stays. 

Just before my second surgery. My uncle took full advantage
of my reduced mobility by introducing me to video games aged two! 

The first date scheduled for Harrison’s second heart surgery was in June 2000. This was the first time that we became aware that rather than summer being a healthier time of year for Harrison, it seemed this was when he was most prone to develop pneumonias. It was a pattern that presented for several years throughout his childhood. Another round of antibiotics and time to recover, then another date was diarised. The second time, we made it to The Royal Brompton and during the pre-op checks the night before surgery, Harrison spiked a high temperature. Further symptoms swiftly developed so he was sent home again, this time with a plea from the surgeon to Harrison’s local consultant paediatrician, to get him well enough for surgery!

It was not only incredibly frustrating for the surgeon, but it was difficult emotionally for us too. As soon as the surgery date has been confirmed (we usually have a couple of weeks’ notice), I can’t help but start thinking about what might be. It’s really difficult to explain; I feel relief and optimism that Harrison’s being given the chance of better health but at the same time, I think about possible complications that might arise during or post-surgery. With so many surgeries behind us now, I have too many experiences to draw on! From the time the date for surgery is confirmed until he’s safely breathing on his own again, I’m functioning on autopilot; feeling empty / numb. So, you can imagine how stressful it is when surgeries are cancelled for any reason and we’re back to being in limbo not able to resume our life because we need to keep a very vulnerable child free from infection in anticipation of an imminent surgery date. 

Anyway, after a few false starts, Harrison’s second surgery (a right-sided unifocalisation of the multiple collateral arteries) went ahead in August 2000. 

How do Bernard and I fill our time whilst we're waiting for Harrison to return? Our routine is always the same. He’s more often than not first (or the only patient) on the surgery / procedure list for the day. 

We never eat before Harrison is taken to the anaesthetic room. It doesn't seem fair when he's not been able to eat anything since midnight the night before. We established a routine from the first diagnostic cardiac catheter when he was about 8 months old. 

After leaving Harrison anaesthetised, we eat breakfast in silence in the hospital restaurant. Next we amble (no need to rush; we've usually got at least eight hours to fill) across Albert Bridge to Battersea Park and sit on our usual bench backing onto the Thames. We try to busy ourselves by watching the world go by (land, water and air) whilst trying not to look at our watches more than 100 times an hour! We barely speak a word to each other but when we do, it’s never to make any post-surgery plans. At lunchtime, we head back across the river to get a main meal. Not because we're hungry, but in case we don't get a chance to eat later because we want to sit next to Harrison's bed. 

Battersea Park or the Peter Jones department store at Sloane Square (if it's raining) are the furthest that I’m willing to be away from the hospital when Harrison is having surgery. They’re both approximately 15 minutes’ walk away in different directions but close enough to be able to run back to the hospital in a few minutes. After lunch, we wander back in the general direction of the hospital pausing for another couple of hours in St Luke’s Gardens. It's another tranquil spot which happens to be conveniently located directly opposite the hospital! 

St. Luke's Gardens.
The building in the background is the Sydney Street wing
of The Royal Brompton Hospital.

When we can bear it no longer, we saunter into the hospital failing miserably at pretending that we haven't a care in the world! We always return to the hospital far too early but we’re forever optimistic that Harrison’s surgeries and procedures may be without complications. The only places for us to hang around and wait in the hospital are the parent room or the coffee shop. The bed space that Harrison had previously occupied on the ward would have been reallocated to another patient. Even if the pager we’d been loaned and our mobile phones haven’t indicated that it’s time, we impatiently head to the intensive care unit to ensure that we're there at the estimated time for Harrison’s return and to see if we can catch a glimpse of him on his way back from the operating theatre. 

We follow the same routine every time……

Thankfully, for this second surgery, Harrison didn’t follow his usual path and recovered very quickly. He was extubated the following morning and discharged from the general ward eight days after the surgery. This was the first of only two out of five textbook heart surgery recoveries for Harrison, so he took everybody by surprise!

He was sent home still requiring oxygen, but it was hoped that his need would diminish rapidly soon after. 

Completely spoilt by my grandparents
but very handy when you're too tired to walk!

This was not to be the case. He became more and more irritable, and soon needed more oxygen than ever before. To ease his breathing overnight, we raised the head end of his bed. He still sleeps on an inclined mattress today. 

He was extremely breathless, and couldn’t walk two metres without his oxygen levels in his blood dropping to low 40%. This was while he was being given THREE litres of oxygen per minute. This amount gave Harrison severe headaches, and the extreme breathlessness caused vomiting and weight loss. He was sent back to the Brompton only two weeks after going home. The Brompton staff decided that Harrison should remain with them until he could undergo a total correction for his heart condition.