Well it’s been a while since I’ve written anything,so I hope you all had a great Christmas and have a wonderful New Year.Mine was quite eventful to say the least.
At the end of November I started to feel unwell,my “staff” did all they could as usual but I didn’t seem to get much better,eventually they had to call for an ambulance.The paramedics were great as always and took me to Peterborough Hospital. I get taken straight into resus as they know me well and I think I scare them a little bit.One minute I’m breathing then I just stop.They always find it hard to get a line in my veins,I’ve had so many needles in me that most of my veins are too difficult to access,now they don’t even bother they just drill into my leg bone and place what is called an I.O straight into my bone.I was then taken up to theatre to be placed on a ventilator,they always do this in theatre as It’s difficult to get the ventilator tube down my throat.
Then myself and my “staff” have to wait and see where an intensive care bed is available,Peterborough have no intensive care beds for children.A bed was found for me at Leicester Hospital.We then have to wait for a transfer team to take me , usually the CATS team take me.They have to come from London to get me so we all just have to wait till they arrive.
This time the CATS team were too busy so Peterborough decided to take me themselves.I arrived at Leicester in the early hours and was taken straight to intensive care.I spent nearly a week there.My “staff” made the journey to Leicester and back every day as there was no where for them to stay and they had to look after my brother and sister at home as well. when the consultants were happy I was well enough to go home,(I don’t go onto a ward because I pick up infections too easily so I get discharged from intensive care to home), they took me to my house in one of their ambulances.
My “staff” and my family were so pleased I was home,their pleasure didn’t last long.Two weeks later I was back in an ambulance on my way to Peterborough to be ventilated again.This time I was taken to Addenbrookes in Cambridge,my local intensive care unit.I spent five days there and was discharged home again.Just in time for Christmas.
3am New Years Day I was again in an ambulance on my way to Peterborough to be ventilated again.This time the only bed available was in Nottingham,I was lucky this was available because the only other hospital with a bed for me was in Belfast.
Nottingham’s tranfer team came and got me and I was taken to their intensive care unit.The consultants here were shocked at how hard it was to get a line in my veins and made some good suggestions to my “staff”,They also picked up on my electrolyte levels in my blood were low.My “staff” have been telling my local units this for over four months but they seemed to think it was ok.Nottingham on the other hand seemed to think that this could be one of the reasons I get ill.So I spent eleven days in Nottingham.My “staff” had to travel this every day as there was no accommodation for them.When I was discharged I had to go to Peterborough for a couple of hours, something to do with paying for the transfer,NHS politics.I came home with a port a cath which is a port placed under my skin and connected to one of my main veins,then my “staff” or a medical professional can put a needle through my skin straight into the port to gain access to my vein (no more drilling in my leg, yay ) .I also have three more medicines to top up my electrolytes and I must have weekly blood tests,but these can be done at home now thanks to my port a cath.
So as you can see the festive season was quite difficult for me and my “staff”,but I did get some really nice sensory lights and clothes for Christmas.My “staff” have told me that I’m not allowed to have a repeat performance of this on my birthday in May,(they didn’t say I couldn’t do it any other time though),so I will have to wait and see if my new meds will help me stay away from hospitals.
Well till next time,stay safe and well and I’ll try to do the same.
Amelia-Rose
Living With Ohtahara Syndrome 