His Story - 8 months - RSV and oxygen dependency

When he was 8 months old, Harrison contracted RSV (Bronchiolitis) which threatened his life. He had literally just been discharged from hospital following yet another stay for a diarrhoea and vomiting bug. The nurse came into our cubicle to say that we could take Harrison home but my instinct was that he wasn't quite right. Clinically, all of his observations were as expected so there was no reason for him to stay. 

We arrived home and I carried Harrison into the lounge. I sat on the floor with him to take off his coat and felt him go limp in my arms. At the same time, his eyes rolled back into his head. Bernard was outside just getting the bags out of the car. I shouted to him. We left the bags in the boot, locked the front door and headed straight back to the hospital with me frantically calling the ward on the way.

The doctors had no idea how Harrison could have contracted the virus and could only conclude that it was from literally being pushed through air containing the virus in the hospital or street. 

This was one of the scariest times for me; watching Harrison’s increasing struggle to breathe despite every intervention that our local hospital could administer. He was on steroids, intravenous antibiotics and virtually constant nebulisers but continued to deteriorate over the next few days. In the end a retrieval team from Guy’s and St Thomas’ came and collected him for a stay in their intensive care unit. I think this was the most helpless I've felt throughout his life so far. We couldn’t travel with Harrison in the ambulance due to the number of staff going with him in case he needed lifesaving treatment en route. They told us not to follow the ambulance directly so we left our local hospital a while after them. Bernard’s brother drove us up to London but given the congestion starting on the outskirts of London, we caught up with the ambulance. From the back seat of the car, I was silently willing the traffic to move out of the way so that the ambulance could get through. I couldn't believe the way some of the drivers used the ambulance as a tool to help them by pass the jams too! We arrived in Guy's hospital forecourt at more or less the same time as the ambulance. 

Accommodation was organised for us in the Ronald McDonald house close to the hospital and after a few days in intensive care, Harrison had improved enough to continue the intense hourly nebuliser regime on the ward. He was given a side room and as he was no longer in intensive care, we had to relinquish our room in the Ronald McDonald house. I moved into Harrison's side room and Bernard travelled up to visit each day. I didn't set foot outside the room until Harrison was transferred back to our local hospital a couple of weeks later. He remained an inpatient to continue his recovery and in an attempt to wean him from the oxygen that he’d become dependant on.

After another month in hospital Harrison had recovered enough to be discharged, but the RSV had damaged his lungs. It was clear that he would be requiring additional oxygen for some time. He was put onto continuous oxygen via nasal cannulae and stayed on this for 24 hours a day until November 2000. 

He loved his new winter hat!

We had an oxygen concentrator installed in our house with taps and tubing to allow Harrison to mobilise throughout. The concentrator was powered by electricity so we also had to store two large stand-alone oxygen cylinders in our garage for back up in case of power cuts. We needed to take them with us to provide Harrison’s additional oxygen if we wanted to go on a short break or an overnight stay. The two large cylinders were sufficient for an overnight stay but not for a short break. Given Harrison's track record for hospitalisation, we rarely strayed far from home. However, when he was 19 months old, we took him to Disneyland Paris where we needed four of these large cylinders for when we were in our hotel room and eight smaller ones for going around the park and travelling to and from Paris. Thankfully, we were only there for two nights because the cylinders filled our people carrier and we needed to use a roof box for our suitcase and Harrison’s pushchair!

The bag carrying the oxygen cylinder can be seen poking out the back of the pushchair.

Feed pump in the grey bag hanging from the pushchair handle.
Despite the tubes he still attracted the pretty girls!

Alongside the two large oxygen cylinders that were permanently in our garage, we had between six and twelve small portable oxygen cylinders delivered to our house each week. The purpose of these was to enable us to go out, not just for all the medical and therapy appointments but for pleasure too! Depending how ‘well’ Harrison was, one portable cylinder would last him from half an hour to four hours of continuous flow. On a ‘well’ day, if we’d planned a trip out, we would take three portable cylinders with us, which would in theory last for twelve hours. We had to allow for any unexpected traffic delays or a rare malfunction of a cylinder where we could either not undo the seal, or it was already empty.

Carrying around these weighty cylinders and a poorly toddler put a lot of strain on my body. Even now, I still suffer from hip pain on the side where I used to carry both Harrison and a cylinder simultaneously. I've also developed lower back problems.

After a while we were able to switch to liquid oxygen which made a big difference in several ways. Firstly, we didn’t need the concentrator, so no longer had to rely on electricity to power Harrison’s indoor oxygen supply at home. However, we kept the large cylinders in case we wanted to go away anywhere because the main liquid oxygen tank wasn’t portable. We now only needed one plastic portable oxygen container because it lasted far longer than the traditional small metal cylinders and we refilled it ourselves from our large liquid oxygen tank.

The portable liquid oxygen tank can be seen at the top of the photo

In addition to being far lighter to carry around, it meant that we didn’t have to rely on the weekly deliveries and find space to store them all. The main liquid tank was replenished every two to three weeks, which was a fun event for Harrison to watch. The oxygen lorry would park on our driveway and a long hose would connect from it to our tank which was situated just inside the front door under the stairs. 

Harrison would sit in his pushchair in the front garden with his ear defenders on (it was an extremely noisy process) and watch carefully. Afterwards the driver, who we got to know very well, would present him with the paperwork which Harrison (aged 2) would scribble on as acceptance of the delivery!

For the next three years, Harrison caught RSV each year. After that he had the pneumonia vaccine for the first time. He had to be given both the baby and standard dose of the vaccine for his body to produce a response. In theory, it's a one time jab to offer protection. However in Harrison's case, due to the problems with the way his immune system works, his level of protection wains steadily over time so he needs re-vaccinating every few years. It's one of the levels that's checked annually by the immunologist.