Our intensive care story

What a difference 10 days makes. To go from the most extreme thing you've ever experienced to almost total normality is a strange feeling. It almost doesn't feel like it can have happened? Like it's just another story I've been writing in my head like I have done my whole life. i find it hard to truly believe that our little family have gone through something so extreme but we did. I feel like stopping everyone on the street to tell them what we just went through. So far I have only stopped one person, which I think shows great restraint. 

The main thing I've learnt this week is that when someone comes out of major surgery  a lot of people assume it is the end of the ordeal, when in fact it is only really the beginning. The morning before his op I had a bouncing, happy and on the surface of it, healthy 10 week old. By the evening I could barely recognise him. Nothing could have prepared me for what I was going to see but I knew as soon as I got the call that the operation was a success, that shit was about to get real! I felt the world expected me to jump for joy, I had expected me to jump for joy but instead I was filled with fear. The thing with an operation like this is you can almost dismiss your fears. Don't get me wrong  there is of course a big worry that it could go wrong but you basically feel sure that it will work, that he is in the hands of people who know what they are doing, world experts for whom this rare condition is something they deal with all the time and you sense their confidence if will succeed even as they have to tell you the percentage it may fail. To an extent you know the fear surrounding the outcome of an op like this is, on the whole unfounded. But the fear of seeing your child after such a huge operation is totally  legitimate. You're never going to walk in there and be like "oh cool, he's actually laughing and rolling around and loving life" No. Whatever you're presented with is going to be scary and for us this was maybe more the case than most. If you've read anything about our experience so far you will know I'm just not in the habit of self pity and that is true now more than ever. I remain overwhelmed by how lucky we are, but in this one aspect I do think what we have experienced and more importantly what he has experienced, is especially terrible. And it was especially terrible on the back of something especially good, which I know sounds weird but let me explain. 

The day before they prepared us for what we would see and we were told that when he came up from surgery he would be intubated: a big tube would be down his throat, attaching him to a ventilator. This was going look scary but he would be totally sedated and wouldn't feel a thing. So we prepared ourselves for that. It was not what we saw. Theo responded so incredibly well to the surgery that they took the seemingly unique step of removing the tube whilst he was in theatre. This NEVER happens! We spent the whole week hearing about how unusual this was. Everybody from the surgeons to the consultant doctors, to the nurses, commented on how brilliant and unusual this was, and don't get me wrong I am grateful they took this step. They made me totally understand why they want to extubate as soon as possible. I am so glad and proud that they could take that step when they did but it does have a horrible side affect. Once they extubate they can no longer completely sedate. I won't describe the details of what we saw because it is something I am trying to forget but suffice it to say when we went in, he was awake and in agony and this lasted about 36 hours. He wasn't in agony the whole time, sometimes the huge amounts of pain killers appeared to give him some respite, but basically they couldn't maintain the right balance. They needed to keep him awake enough so that he would breath by himself but asleep enough so he wouldn't feel it all. What I hadn't really realised before is that this is not a paint by numbers type of situation. I have never seen a team of people work harder to achieve something than the 20 or so medical people who tried to get him comfortable. Our only comfort was knowing how hard we were all fighting for a solution. I sang to him they provided hard drugs- we were divided by skill set but united in what we were trying to achieve. My son will never seem more the centre of the world than he did during the first few days of his recovery. 

On Saturday morning at 5am I got a call that we needed to come in because things had taken a turn for the worse in the night. While they are in intensive care you're given accommodation in the immediate vicinity so you can get some sleep but be on hand. We raced over to the ICU to learn that his heart, which had been experiencing rhythm issues since the op had entered into a different kind of arrhythmia called PSVT- his heart was racing at about 250 bpm and they were close to putting him back on the ventilator, an almost unbearable backwards step. Again at that point the world seemed to revolve around him. Doctors from many different departments, several of the top nurses, matt and I all stared at the screen and waited for something to work. In the nick of time something did slowly we began to realise that the crisis was fully averted. We had to wait several more days for the other types of arrhythmia to disappear. One morning it just clicked back into normal rhythm and for the first time we could think of life outside intensive care. What began as a huge bank of machines all pumping different things into his tiny body dwindled to two machines, then one and finally none. They moved us out of the ICU on to the high dependency ward, then into a cubicle by ourselves and now home. He still has a couple of meds but I can give them to him orally. Gone are the many tubes running into veins and arteries and around his heart. As he shed each one he began to seem more and more himself. One morning I spent what felt like hours just staring into his beautiful eyes. It was like he was searching me for answers and the only answer I could give that he could understand was love. I just tried to pour love into him with that look to assure him that this was all somehow an act of love. Of course I will never know for sure that he understood but it seemed to me he did, that he relaxed and grew more content the longer I held his gaze. I can't explain it but it was probably the most profound moment of my entire life.

How is he now? Firstly he has the most beautiful scar I've ever seen. It's so neat and delicate. The bruising has gone completely now and it doesn't seem to hurt at all. I've even caught him gently stroking it, which quietly freaked me the hell out but he didn't seem to mind at all. The scars where his chest drains were aren't so pretty nor are the scars on his neck where they had to run drugs right into a big artery but they'll look fine in time I'm sure. In himself he seems a little on edge. When we first went to hospital nothing phased him, you could draw blood and he'd be cool with it. Blood pressure no problem. 3 weeks and a hell of a lot of discomfort later and the mere sight of a stethoscope is enough to freak him out. He's just not quiet as relaxed and calm as he usually is. I have to keep confident that he will be back to his old self soon, but I do wish this would happen soon, for his sake. The most important thing is that his heart is doing really well. His oxygen levels are as good as any of ours, his skin is rosy where once it was grey and there's every reason to hope that this will be the only surgery I ever have to see him through. Of course there are no guarantees but we're  quietly hopeful and loudly grateful. 

I have a lot more to say about our experience. Hopefully the next blog can be a little more light hearted but I wanted to get down my intensive care experience while it's still fresh. One day, when he's a lot older I will read all this to him, if he's interested. For now I plan to make a picture book for him so he can understand in a basic way how impressive he was, how much he went through, how much he is loved and how grateful he should be to all the nurses and doctors who helped save his life. I hope he will be as in awe of them as we all are of him.