Too Little…Too Late With Caleb

 Every few months I get a message here on the blog. Ironically, it usually comes from a mother. A mother whose child has recently suffered a spinal cord injury and they are looking for answers. Answers I do not always have. Answers I wish were simple and are not. Many want to know if stem cells work, others want my advice on whether or not they should get stem cells. Some are just fumbling in the dark looking for some sort of direction now that the doctors and therapists have sent their baby home. It can be a tough and heartbreaking conversation.

I have noticed a recurring theme in all of these exchanges and it baffles me. It is the sheer lack of preparedness and practical, useful real world how-to information they are sent home with by the medical establishment. They simply have no clue and judging by the information they are given the doctors and nurses have no clue either. It’s a crime when you really think it over.

In five days it will be twenty-one years since my accident. I am in astoundingly good health and due largely to the fact that we noticed very early on that with a little common sense and forethought many potentially dangerous situations could be avoided. The truly interesting fact is that 80% of the time doing the exact opposite of what the nurses did or suggested was the safest route. While I am very thankful to be healthy that little bit of info I just shared does not paint a very reassuring picture of the medical profession or its understanding of living post-injury over the long term.

I’ll give an example of what I am talking about. One of the major problems to watch out for post-injury health is skin breakdown due to sitting or lying in a particular position for a long time. However, many other skin issues can arise from dry skin, heat rashes, insect bites, burns, soap residue and so on. It is vital that the skin be kept perfectly clean and dry. So in order to maintain proper skin health someone like me must constantly shift their weight, reposition in bed, stay clean and stay dry.

Now here’s the mix up. Nurses are taught to prevent skin breakdown by keeping the skin soft and moist by covering their patients with copious amounts of lotion. A technique most commonly used and developed for the elderly. It does not apply across the board and it simply does not work with spinal cord injury. What happens is that more often than not lotion is not given time to dry, especially in areas that don’t often see the light of day. Instead of that morning dew glow like Beyoncé you get whole areas that never get totally dry. Warm, dark and damp equals a breeding ground for stuff I don’t want to discuss. Not only that, but most moisturizing products use mineral oil and not essential oils. The cellular walls of our skin does not absorb mineral oil, but what’s worse is that mineral oil keeps water and oxygen, the two things your skin needs most, from moving both in and out of the cell membrane. It’s like spreadable cellophane wrap. So why do the nurses use it? Even more, why do they tell us to use it? 

I could provide example after example. Each more disturbing than the other and sadly the cause of great physical and emotional suffering, and even loss of life. Sometimes I think we need a cure for spinal cord injury more to be protected from outdated, careless medical practices than the injury itself. The entire system needs a dramatic overhaul before it’s too little and too late.

If you are reading this and you or someone you love has a new injury, get online, do more research. Study the products and medications you are using. Talk to those of us with older injuries. Don’t be afraid. If you are a nurse or a doctor, listen… LISTEN… think things through. Observe. We don’t need any more parrots spouting what they’ve been taught. We need healthy, bold innovators. Network and find practical, useable resources for your patients. If you are one of these medical professionals who got into this because of job security then God help you and I hope you sleep at night. Yeah, I just said that.I realize this month’s post is short, but hopefully it is to the point and made you think.

Thanks for reading.

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