Exactly one month ago today I took Romeo to the GP, he wasn’t himself. He was crying constantly, was missing about 2 bottles a day and just impossible to settle. The diagnoses… colic. Now I know my baby boy and this wasn’t just “colic”, something was up with him. 2 days later I had text my nurse as I noticed he had thrush in his mouth and was starting to get really concerned about his feeding, she told me if I am really concerned to take him to the children’s unit in our local hospital. I took him there expecting to go home that night with some medicine, oh how naive I was.
They agreed he needed to have an NG tube fitted as he just would not take a bottle, we were then expecting to be in a couple of days until he had established feeding again.
It’s just thrush, it’s just a cold, he has had a viral infection, it’s the heat. They were trying to rule out everything until 5 days later when a student nurse was on shift. She noticed his head bopping whilst breathing which is symptomatic of respiratory problems. She must have told the doctors and thank god she spotted it, within a couple of hours he had a chest x-ray and an echo which confirmed his heart was enlarged. Knowing his condition I don’t know why it took them 5 days to check his heart and it makes me so sad to know he was struggling for that long without anyone picking up on it.
The next day we were taken by Ambulance to Southampton General Hospital, to the Ocean Ward where they specialise in paediatric cardiology. It was now obvious that we wouldn’t be leaving until he had his open heart surgery. The emotions hit me like a tonne of bricks once we got there, suddenly I am surrounded by really sick babies and children. Everything was a whirlwind and it all started to feel more real the gravity of Romeo’s condition.
The doctors do their rounds every morning, Romeo had a couple of outpatients appointments before but had never actually been seen by his named cardiologist, luckily that week he was the cardiologist on ward rounds. He took one look at Romeo and said he would need his surgery very soon within the next couple of weeks. He’s 4 months old and only weighs 9lb, this poor kid has been struggling for a while. He needed to be a certain weight for surgery, but could never realistically get to that weight because he needed surgery.
They have multidisciplinary team meetings every Monday, Tuesday & Wednesday. We arrived on a Wednesday so he wouldn’t be discussed until the next week. In hospital you come to realise the weekends are nothing days, no one is around and absolutely nothing happens which means no progress. It’s strange in real life your working week you are wishing away, in the hospital bubble you are wishing away the weekends just so you can start moving forward again.
The next week comes and now they have found a few more issues with Romeo outside of his heart, they arrange for an ultrasound to be done on his liver, kidneys and spine to rule out more related problems. This now pushes us back another week as this was not done in time for him to be discussed in this weeks meeting.
After another long weekend I’m excited it’s Monday, they will definitely discuss him and we are going to get some answers. “Do we have a date for surgery yet?” I ask the doctors. “Between me and you, he will be going down on Thursday but we will let you know for sure by Wednesday”. I feel excited knowing that finally my baby boy is going to be fixed, he desperately needs this surgery but at the same time it is the scariest thing we will ever have to go through. The surgeon is going to stop my babies heart and stick him on heart/lung bypass whilst he sews it back together, it’s the most horrible thing to imagine just picturing your baby laying on that operating table.
Wednesday comes around and we now meet the surgeon, we sign the consent form which feels like I am signing my child’s life away and then we shake the hand of the man who is soon to be holding my babies heart in his hands. I want to spend every minute of the day with Romeo, cherishing every second and enjoying his last proper bath. Thursday morning comes around, I am back up at the hospital at 7 in the morning, again wanting to spend every single second with him. Today is his big day, he is second on the list and I notice the first little boy didn’t go down to theatre until half 9. I thought this was a bit late as I know his procedure is really complicated, but still I am hopeful today is the day. The anaesthetist comes to see us around lunchtime and I am sure it’s still going ahead. At 3pm the liaison nurses started getting a bit concerned, time was ticking by and still no word from theatre. 10 minutes later the nurse in charge comes in to see us, “I’m so sorry, theatre have just rung and they have cancelled Romeo’s op today. The surgeon is going to be too tired.”
Yes I don’t want a tired surgeon carrying out an operation like this on my baby but I have literally been on an emotional rollercoaster all day long, every sound of a trolley I think is a porter coming to get Romeo, every time I see someone in scrubs I think they are coming to collect him, I have been on edge all day and now I feel like we have taken a massive back step and are now going to have to go another week without a date for surgery. Later on that evening the doctor came round to see us and told us we were now on the list for tomorrow, we were still second on the list so there was a high chance the same thing was going to happen to us again.
Friday morning I felt a lot calmer, it felt like Groundhog Day but we had been through all the emotions already. I felt like if it happens it happens but I’m not getting my hopes up. The little girl who was first on the list went down a lot earlier than when they started the day before, this felt like they were heading in the right direction this time but then it started getting to about 2pm, they had already started sewing seeds in my head at this time the day before that surgery would be cancelled so I started giving up hope. At 2.30pm one of the doctors had come out of theatre, he said the surgeons were all up for Romeo’s op and felt a lot better than the day before and that they would be ready for him in an hour.