A pressure sore might also be called a pressure ulcers or bed sores. They occur when the skin and underlying tissue becomes damaged from too much pressure or an injury that does not heal correctly. Individuals who uses wheelchair are at risk for pressure sores due to decreased blood flow, poor or no sensation and poor or misalignment of body parts. The biggest area of concern for Mel was and is her rump area.
With all the knowledge about pressure sores in the medical community, I am surprised about how little I knew about them prior to Mel getting her first. We had been told to check her skin, and given mirrors and lessons but no-one every showed me pictures, or described the processes of healing. Or maybe I lived in fantasy land and just ignored the possibility this might happen.
Mel got her first pressure sore in 2009. She was 14 years old. She was developing scoliosis. (Her medical team had basically indicated she could have rods put in her back if she wanted but the risks did not seem to outweigh the benefits). The scoliosis was shifting her pelvis and thus the bones were no longer balancing her weight over a large surface. At that point, I think the medical team should have shouted PRESSURE SORE PREVENTION. They were not.
I recall Mel was in her room and starting screaming. I rushed in and she was holding a mirror attempting to get a better view of her rump. At least she was looking. She was looking at what would later be called a level three pressure sore. The physician could stick a probe into the sore and feel bone. At that time, I really did not think it looked that bad. In my mind pressure sores were grosser and just different from what I saw. In my mind, we could go to the medical clinic and Mel would be fine in a few weeks. Boy was I wrong!
The medical community describes pressure sores in levels.
- A grade one pressure sore is the most superficial type. The affected area of skin appears discolored. The area is different colors in people with different skin tones. The area stay discolored for 10-15 min after it happens. The Medical Team presses on the area but I am not sure what they are looking for. Anyone know? Why do they push on the area to assess it?
- A grade two pressure sore is when some of the outer skin and the deeper layer of skin is damaged. The outer skin is gone. It kind of looks like a bad sore one might get if something scraped a chunk out of our arm/leg.
- In a grade three pressure sore, skin damage occurs that is so deep entire thickness of the skin and the underlying tissue is involved. The underlying muscles and bone are not damaged but in Mel’s case the bone could be felt with a prob. It’s a deep hole in the skin but the deepness can be deceptive. I was so stunned to see how far the probe went into Mel’s body.
- A grade four pressure sore is GROSS. The skin is severely damaged and the surrounding tissue begins to die. The underlying muscles and/or bone, may also be damaged. Infection risk is extremely high. You can sometimes smell on odor and that is BAD.
Many asked where Mel got her first sore. The truth is, even the medically community could not figure it out. At first they thought it looked like an insect bite that had developed into a sore, then a burn. As they interviewed us we discovered the following possibilities.
1. Mel had been at a sleep over and had slept on the floor – Bug bite?
2. Mel had sat on a towel at the edge of a pool – bug bite, pressure area from small rock, burn from the pool edge?
3. Mel had played wheelchair tennis for 15 min while I ran back home to get her cushion. She had sat in the chair without a cushion. – Pressure area?
4. Mel was sitting on an un-cushioned toilet seat at school – pressure area?
5. Mel scooted on her rump all over the place as she pleased – pressure area or sitting on something she was not aware of?
6. Mel had recently gotten a new wheelchair cushion. – pressure area?
Exploring the cause was the best way to put preventive measures in place. Once a pressure wound heals, the area is only back to 80% of its past density. The child is twenty percent more likely to get a pressure sore in that area. Because of her sores, Mel has to always sit on a special cushion. She even has to have a cushion on her toilet seat. She is not supposed to ever, ever sit on any hard surface for any amount of time. Quality of life decreased dramatically due to all the preventative measures to prevent a second sore. It would have been easier to prevent the first. Just being honest!
No matter what the cause, the sore had to be medically treated. Mel has had at least 4 pressure sores since 2009. Most level 2 and then one level 3 again in the same spot as the first one that occurred in 2009. It takes 2-3 month minimum to heal a pressure sore. Prior to 2009 I do not think anyone told me this. Two to Three months of no pressure in that area. NO FUN.
Two of Mel’s sores were level 3 and required her to be in hospital for 10-12 weeks. We could have elected for nursing care in the home but that seemed worse. The last pressure sore was surgically covered with a skin graft that required 4 weeks of Mel in a bed with a special air type mattress that could not be moved from her room. Yes, 4 weeks of lying in a bed, no showers, no sitting up, no getting out of the room. BRAIN DRAINING EXHAUSTION.
So how did Mel get the other pressure sores?
1. She got one on her big toe from stuffing we put in her shoes. We have always bought her shoes within a range of sizes. We simply stuffed the toes to prevent the toe of the shoe from caving in. As her foot grew, we had forgotten the stuffing in one of the shoes. This sore required regular doctor checks and shoes that did not press on the toe for 2 months.
2. She had one on the back of her leg from dropping her foot over the foot plate. As she pushed the area o her leg rubbed until a sore formed. 2-3 months with the leg raised, in a protective boot and regular doctor visits and treatments.
3. She got on the side of her leg, down by the ankle. Honestly, I have no clue where that one came from. Just writing this all down is draining me.
4. She got one on her heel. She had a callous for some time. Her right foot was stiffer and the foot tended to lift upwards when she was not in a shoe. The foot plate had holes in it. The heel pressed into the foot plate holes when they were not protected with a shoes. Our doctor had told us to remove the callous. We just never got around to it. The callous seemed like protection right. WRONG. One day she spent just a little to long without a shoe. One day, after years of it being no big deal. The heel started to look a little different. Under the callous was a pressure sore. When the callous was removed, the probe went to the bone.
5. She got one while on a school trip to Disney. The sore was in the same spot as her original wound. I did not go to Disney, as she was a sophomore in high school. I think she probably got tired from all the transfers and was bumping her rump on the seats as she got on and off rides. It was almost healed and then I put a covering on it for a camp she wanted to go to (3 months after Disney). The covering was too adhesive and pulled her skin off as it was removed. YUCK. Hospital bag was packed as I called. I knew the routine. I was not longer ignorant as to the processes. I wanted to scream and cry at the same time.
I want to say at this point that Mel is a very active child. I refuse to slow her down or let life circumstances slow her down. I am not sorry she plays tennis, swims or went on the Disney trip without me. Life happens and Mel has fun. Life should be fun. You can not worry 24/7 about injuries and such. You can however take precautions. Knowledge is Power
The picture below is what one of Mel’s sores looked like. It’s a level 2 pressure sore. Level 1 looks similar but the skin may not be broken open. Level 3 is deeper and redder. I think all parents of kids who use wheelchair full-time need to google pressure sore and look at the pictures. I had no idea what a level 1 pressure sore looked like. It looks like a good old, regular, kid sore (an insect bite, small burn or scrape). Discolored skin that stays discolored for a time. When you see these, you have to explore the whys before the area gets worse.
I’m not saying be overprotective. Kids need to be kids. Just take precautions and teach the children to check their own skin daily. Parents need to know what a level 1 pressure sore looks like. Sorry for the picture. I know it is gross but unless we are educated we can not prevent.