Do you remember that time we went all the way to London for heart surgery and instead only stayed for a Pizza Express?

Elijah's OP Part 1

Sitting here and looking at the photos it feels like just yesterday. The feelings are still raw, slightly dulled but still fresh. It has now been 12 months, 365 days since we first went down to London for Elijah's Tetralogy of Fallot repair. We had been waiting for this for 6 months. 6 long tainted months. Now it was here. We had the date. We were ready, well as ready as we could be.

 

I've been told again and again not to dwell on the past. To not sit there thinking, this time last year we were packing for London, this time last year we were taking him down for surgery. With the anniversary coming up I cannot stop myself thinking like this. The emotions are still there eating me up. It's hard to explain that although I have a healthy, funny and clever little boy that I can still be sucked into the past again, but I can remember everything about this time last year.

 

We had known the op date for a couple of weeks beforehand as I decided to put Elijah on the cancellation list. The reason for this was that his surgery date wasn't looking like it would be for another 3 months and we couldn't go on like this.

 

We couldn't do anything, I didn't know if I could go back to work. I couldn't even tell them a rough date. It was something that was hanging over us, and we couldn't shift it. So, if we went to Great Ormond Street and have all of the pre admission tests done, blood tests, ECG etc ready for when a spot would come up, we would get a call and he would go down for the op. However, turns out we had a surgery date before we even went home after pre admission.

As soon as we had the date, I cried. A lot. We had been waiting 6 months for this, it's all I wanted for it to be over. But now the date was here, I didn't want it. It was too real.

 

The next two weeks went in a flurry of emotion, worry, arguments, packing and a full blown breakdown. Family and friends came to visit Elijah, bringing him cards, presents but it was almost like a goodbye. I couldn't cope with people being there, I was convinced my son was going to die. I spent my time locked away reading and re reading the surgery details, and survivor stats. I scoured the hospital list for the things that we would need and spent hundreds of pounds getting ready to pause our lives and go down to London.

We were told all being well Elijah would be in hospital 7-10 days. He would go down for the op, and go onto The Cardiac Intensive Care Unit and then be moved onto a recovery ward. We would be put in a flat down the road when Elijah was in Intensive Care and then one of us could stay next to him on the ward. The worry about leaving our lives and dealing with all of this hundreds of miles away added to the whirlpool of emotion I was feeling. Greg had to book annual leave from work so it left me to deal with most of the organising, speaking to the Cardiac office, packing our bags and arranging it with my very lovely and generous friends to take us.

 

There was so much to think about, the tube journeys, when Elijah would eat, did we have enough toys to keep him happy, did we bring enough clothes, what was the hospital accommodation like we were staying in the night before? The fact we had to wake Elijah in the night for a last feed as he wasn't allowed anything past 6AM the next morning. Would he even sleep in the room? Would we? How would we cope with this?

After a hot and struggling journey on the tube after my friends dropped us at Epping (we majorly over packed and had 2 suitcases, 1 kid's suitcase, a weekend bag, my handbag, Greg's backpack, and a stroller) it was a NIGHTMARE. We had no where to put our bags and we hadn't eaten in hours and been up since 6. We went for something to eat as we didn't have to go to the hospital until 14.00. We must have just looked like a normal family on a family trip. Not that in a matter of hours my son was having open heart surgery.

 

As he had already had pre admission tests, we only had to sign consent forms and have some more blood tests. A lovely Nurse Doreen (who we had met previously) was with us again and did everything she could to make us laugh.... but Elijah was doing this himself by weeing all over the toybox when he was being weighed.

 

I signed the consent forms, I signed permission that they could cut open my son and 'repair' him. The surgeon came to see us, a fleeting visit in which we were kindly reminded of the risk of death. Had I just signed my son's life away? Someone came to ask us if they could have our son's Thymus Gland as this is something that gets removed and normally thrown anyway. We agreed, I had also previously donated my cord blood too.

 

Then we were free to go, with the instructions for the morning. When he had to start fasting, when we had to be here. It was surreal. We went over to the family accommodation and checked in with Greg going for a walk to find out if there was somewhere we could eat.

We decided to go for a meal, something to mark the evening. It was odd we were walking around London as a 'normal family' but nobody knew why we were really there. A couple of ladies looked over at us feeding Elijah in his highchair they must have thought we were all so happy. They even smiled as if to say I know how you feel when he started having a tantrum. A normal family. I wanted to scream at them, this may be our last meal as a family. I wanted to be normal. I didn't want to have to do this, or my son to have to go through this. It wasn't fair.

After a couple of drinks and tea at Pizza Express I was at my breaking point. We went back to the room and Elijah went to sleep and we tried watching some rubbish program. I couldn't relax so took some tablets and I think we were asleep by 8pm.

The room was hot, Elijah woke early and I felt so bad he couldn't have a bottle when that's all he wanted. We had to get him ready and take him over the road by 7.30AM.

 

This was it.

I felt sick to my stomach.

Doreen came to get us to change Elijah into a gown. She said that there is a chance the op might not go ahead. They were waiting to hear the outcome of a heart transplant as it takes precedent. Elijah's op would be cancelled. As time went by, a doctor came and looked over Elijah and listened to his chest. Elijah had the all clear.

But, it was not to be with 30 minutes to go before he would go down we were told Elijah's op had been cancelled. The heart transplant was going ahead. We were told we could go. Go where? Do what? We had travelled hundreds of miles for our son to have this and we were going back home. My child was not 'repaired'. A child had died to give a heart, another would live as they got a heart but my son had not had his operation. I felt hollow.

 

How on earth could I do this again? We had to get home, we had only brought enough food, milk, nappies for one night as the hospital would provide them after surgery. We had nothing for Elijah. The nurses were lovely and brought us milk while Greg went out to call our friends and get nappies, food etc. We would need to get home.

As the hospital cancelled the op if we purchased the train tickets home they would reimburse us. We had to pack up and come home. To wait for another surgery date. To carry on feeling like I was drowning in this, I didn't think I could go on with it. I almost thought about saying we shouldn't have the surgery. It was needed though, it would save his life. So we waited, waited like we had done for 6 months for another date. Ready to do the exact same thing all over again.

We didn't have to wait long. Two weeks. We had to wait another two weeks and go down again. Go down the day before for blood tests, to stay in the same hotel accommodation and to go over in the morning again after fasting him through the night. I didn't even believe it would happen this time. I couldn't face the fear of it being cancelled again.

I made Greg take the time of work while we waited, I couldn't go through it on my own again. I felt like I was literally going insane. We spent the next couple of weeks spending time as a family. I needed him there. I didn't have this last time and it helped. We also knew how much to take, how to make the journey easier etc. My beautiful wonderful friends were on hand once again to take us down. They were there for us through all of this in a way I can never be grateful enough for. I knew how I would feel and I got some more tablets to try and cope with those feelings when we had to go down again.

 

So there it was, a trip to London, a cancelled op and a Pizza Express.

There was still so much for us to go through with our Heart Warrior, yet never once did he stop smiling through all of this.