April 4th, three years on

My original blog post was subtitled; “When I was scared of my son” and looking back that does still seem like a fair assessment. You see, April 4th was the day Oscar had his surgery and honestly, seeing him afterwards he could have been a different baby. He went from breathing independently (although with a little oxygen at times) to being completely dependent on a ventilator. 
The operation that Oscar was due to have was relatively minor. He was going to have a catheter inserted into his groin and up into his heart. Once there, the surgeons would put a hole between the top two chambers of his heart. They also planned to put some bands on his pulmonary arteries. I’m not a medical professional. I’ll probably get medical details wrong here, but this is what I understood was going to happen. 
Of course, Oscar didn’t follow the rule book and during the surgery he had a cardiac tamponade (don’t google that unless you are feeling brave!) which meant they had to open his chest to fix that and complete the procedure. 

Many hours after Oscar went for his procedure, we were called back to the PICU. When I first saw him, I was so underprepared for the amount of equipment around him and how different he looked. That’s where the “being scared” part comes in. I don’t think any amount of preparation can make you ready to deal with that.  

For reference, here are before and after pictures: 

The after picture, I have copied from Oscar’s diary. It was taken by one of his nurses. I only took one picture that first night after surgery, and I think the distance I was away from Oscar shows how scared I was:

In my original blog I described the equipment surrounding Oscar:

“I realise now that I was never scared of Oscar, just of the mountain of equipment that surrounded him. Over the days that followed, I found that I became so used to the equipment that I could look right past it.
The PICU equipment is scary, but it is also very necessary. I would like to share what equipment Oscar was connected to here…it’s likley I will forget something (all I have to work from is this one picture) and since I don’t have a medical degree I may not be entirely correct, but this is how I understand it.

The Ventilator – The green tube coming from his nose, connected to a machine not visible in the photo. At this point it was breathing for him, but in later days he was able to do more of the work for himself.
The monitor – Shows readouts of his heart rate and oxygen saturation among other things. The heart rate probes were little sticky plasters attached to his chest, and the oxygen probe was usually around one of his hands or feet.

Medications – Those fine clear tubes are all various medications going into lines in his body. In the early days these were in his hands, but pretty soon they just had to switch to anywhere they could get a line in. The oblong grey boxes are the automatic pumps for each medication (there was another stack that isn’t visible in this picture.) On his return from theatre he was on so many medications. These included sedatives, pain relief, fluids, heart medications and blood pressure medications.
Urinary Catheter – Pretty sure this one is self-explanatory!
Also out of sight there were:
A suction machine – used to clear secretions from his chest (a side effect of the ventilator.)
Bags of a saline/salt solution – Used for a form of dialysis when his kidneys stopped working.
A chest drain.

And probably more things I can’t recal now.”

I think when Oscar returned from that surgery was the point when my mind finally realised “yes, Oscar belongs in the PICU.” It was the first time, looking at him, you could actually see how sick he was. 
One of my last, pre-surgery memories of Oscar was carrying him in my arms into the anaesthetic room. Those few steps were the last I was ever able to carry Oscar for. After that point I was only ever able to hold him in his PICU bay. At the time I remember wishing I could just turn and walk the other way with him. How as much as he hopefully felt safe and loved being held by me, I hope he was never aware of exactly what I was carrying him to. 
When I placed Oscar onto the bed in the anaesthetic room, I needed to take his beloved dummy away. Oscar decided to take this job away from me, by hooking it out of his own mouth with his finger; I don’t know which one of us was more surprised. That was typical Oscar though, doing things in his own way. 

I said earlier, that on returning from theatre Oscar could have been a different baby. While I felt that way initially, over the days that followed it was very clear he was still my Oscar, the baby with endless facial expressions. 
Below are a couple of pictures of Oscar’s frown face pre-surgery. His nurse was standing in the direction he was looking, so we may have a bit of curious and distrustful in with that frown as well:

And lastly for today, his diary, today written by Lisa:

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