I've been careful to hide my opinion.
This little girl has a wonderful chance at being cured. We wish her well!
On Holiday with CRPS
29 December 2014, 07:21
This year we debated where to go for our summer vacation. We didn’t feel bound to be anywhere and that was liberating. Our older children were doing their own thing and we only had the two young ones to take with us. I don’t have a real job and so, we could plan and fantasize and in our minds, we could go just about anywhere. We contemplated various destinations but ultimately settled on the Red Cross Children’s Hospital in Cape Town. The views of Table Mountain, its proximity to the Atlantic and well, the service, somehow just met all our criteria.
The very old and somewhat irritating adage of our grandparents “man plans and God laughs” came home to roost for us when our little girl of 10 was diagnosed a few weeks ago with CRPS (Complex Regional Pain Syndrome). At first we thought that she was doing what all ten-year-old princesses do best when living their life through a Disney lens. “You don’t understand my pain!” was met with rolled eyes and a look of “please deal with this cause I am going to lose my mind” aimed at my wife who has been a girl her whole life. I just couldn’t figure out where the emotional pain (caused by uncaring parents) began and the physical pain of whatever it is that she had ended.
And then we were told she had CRPS. The doctor explained that in order to understand the level of agony that she is experiencing we should immerse our hands in a bucket of ice water and keep them there for 60 seconds. We should not remove it for the full period and when we can take it no longer, at the end of that time, and when we are able to remove our hands, we should know that that is what she is feeling and that she is unable to remove hers. Another explained that what a normal person feels when a feather brushes one’s skin, feels like a blow-torch to the CRPS sufferer. This is not an illness for the faint of heart.
One of the doctors in Johannesburg told us that many adult sufferers beg for an amputation of the affected limb and that he has only seen one child with this in his entire career. His distress at seeing our child with this condition made me realize not only how tough it must be to be in the medical profession but also how serious this is.
And then we were recommended the Red Cross Children’s Hospital in Cape Town where the unit has treated CRPS kids for the last 10 years. We waited eagerly for a text to confirm the appointment and the confirmation was the turning point for us. The deterioration over the last two weeks has been tragic. Unable to even use crutches she has been confined to a wheelchair. Now even a walk outside in the beautiful Cape, along stunning shoreline is too painful for her and she remains in her bed waiting for her medication or for the pain to subside enough to move to another room.
They have treated seven CRPS patients to be exact and our daughter will be the eighth. Their approach is multi faceted with traditional approaches to pain (she will be on a drip for 10 days) as well non-traditional methods including art therapy and music therapy. They understand the suffering of these and other children in their care, and you know that the minute you walk into their sanctuary.
The thought of being reliant on the SA public health system (something I have written about), filled me with dread, and it was only after spending two hours with the Head of the unit, after seeing the ward and hearing about the care and the approach, did I begin to relax. It is December in the Cape and the children’s ward is busy and it is filled with unimaginable horrors. And yet it is calm and busy and loving. It is clearly an efficient operation. A full team will be assembled prior to her arrival, which will take place in the first few days of the New Year.
We spend a lot of time (at least I do), lamenting the woes of living in this country. And there are many. They trip off our tongues as we list the crime and the electricity and the post office and the corruption. And, as important as it is to discuss these things, it as important to acknowledge the good that exists for us in this country. The best of intentioned people, the care for our fellows and the lengths that we will go to for the children of South Africa.
In the meantime, as our little girls suffers, waiting for her treatment, what keeps us positive is that there are the people of Red Cross Children’s Hospital who are waiting for her, who will be ready for her and who will do their best, with the help of God, to make her well.
© 2014 L. Ryan