April 13th, three years on

April 13th 2014 was the day of the London Marathon. By this point we were staying at a Ronald McDonald house which was located at the sister hospital to where Oscar was. This meant a tube journey to see him each day and one back to our accomodation each night.On April 13th we were going in the opposite direction to the thousands of marathon runners getting to the race start points, so that made for an interesting journey!

This was our view from the hospital dining area that day:


It looks lovely and peaceful, and we decided not to venture out into the crowds.

After the race had finished we went out for some fresh air (ah, who am I kidding we went to a certain fast food resturant…cheap food options on a sunday were limited.) before the bridge was reopened to traffic:


Anyway, I seem to have gotten a little away from Oscar so far. While thousands of (slightly crazy) people were running around central London, Oscar was of course oblivious to it all.

Our biggest excitment today was that Oscar’s kidneys finally started to behave a little better. He still had a catheter and we became slightly obsessed with watching liquid flow down the tube. So obsessed infact that I took a picture…which I’m sure I don’t actually need to post!

This also impressed his doctors, so much so that his wee got a cheer from them during ward round!

Today was also the day that the tapes holding his ventilator tubes wouldn’t stay stuck. They had removed the line in the right side of his neck overnight and to loosen the glue on the tape holding that, they had used this amazing oil based product that basically disolves the glue. You can probably guess what glue they also disolved by accident!

Changing the tapes holding oscars ventilator and NG tube in place was not a quick or easy job, and I think he would have to have been sedated again, so as long as the tubes were still secure they weren’t too bothered about changing the tape because it looked a little untidy. They did however, try to stick it back down using tape.


You will also notice that he now has two new lines in his head. We knew when we left the night before that they were going to have to but more lines in overnight, and we suspected they would have to be in his head. It was still a bit of a shock the first time we saw him though.

They also had to shave more of his head, and they kept his hair for us in a pot.

I’ve mentioned before that Oscar was a big fan of the shiney heater above his bed. He would spend long periods of time looking up at ut like this:


Sometimes, he would also move his head from side to side, whilst still looking up. If Oscar had ever been moved to a bigger crib, I said they would have needed to find a way to attach that heater above him or he would have been so mad!

Like previous days, there aren’t many pictures I haven’t shared. There is one that I mentioned above:


If it isn’t clear what it is, never mind! If it’s obvious; this was a real proud Mummy moment! Some may think it’s gross (I fully admit it is a little, that’s why I’ve removed the colour) but I suspect others may understand how important every memory is; every photo is. 

I also have a random foot picture:


On Oscar’s left foot is the probe measuring his oxygen. Oscar was a wriggler, so you can imagine that even with the tape, this didn’t always stay exactly where it was supposed to! 

Oscar’s right foot has bruises and pin pricks. I believe they tried to get a line in here (remember this was getting increasingly difficult to do as days went by.) Most of Oscar’s vital medications were given via syringe drivers into “lines” in his body. Not having these medications was not an option. His “Dino-drugs” were especially vital, as they were doing what was supposed to be done surgically in the second part of his operation which could not be completeled. Oscar’s lines never lasted very long. They needed to find new entry points in his body frequently. Each new line usually took several attempts. Even a successful line would sometimes fail after just a few hours. He was covered in bruises and pin prick marks, but I could look past all of that, because he was still alive. Each mark, each bruise, each scar was just more evidence of how much he was fighting. And if I ever needed to see just how determined he was, I only needed to glance in his eyes: 

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