This is a photo of my central line incision site after removal.
I completed my first round of five days, three liter Plasma Exchange in London Hospital of neuroscience and neurosurgery, in December 2012. I was then transfered back to my local hospital.
In total , myself and my husband had been away from our precious tot’s for two months (they were staying with my sister , who love them dearly)
My heart was breaking, I was empty without them. I fought with everything I had to be home with them for Christmas. I just wanted to be able to hold them close, gently kiss their little cheeks.
My husband and I finally was allowed home, but on very strict terms, late in the evening via ambulance on the 23rd of December 2012.
I was released with oxygen, as my o2 continued to drop during spasm. I had to have a hospital bed downstairs, for easy access for the paramedics when need again, a finger prob to monitor my oxygen levels and heart rate ( wish we had to buy, as this piece of equipment isn’t provided by the NHS. Jason was given strict guidelines to follow with regards to how much o2 to give me depending on my Sats. My respiratory system doesn’t reboot itself, so oxygen is required during spasm to prevent cyanosis.
Saturation less than 92%, administrator 4 L o2 for 1-2 minutes. If no improvement of o2 Saturation o2 must be increased to 10 L for 1-2 minutes. Reduce o2 to 4 L when o2 Sats improve to 92%. If there is no improvement within 1-2 minutes on 10 L , call paramedics.
Further more, call paramedics if at any time I show evidence of cyanosis or there are concerns relating to my air way.
So , as you can see, with each spasm I am fighting to live, fighting to breath, fighting against the ghost of Stiff Person Syndrome xxx