When Brian gets home from school, the meticulous bandaging process begins. High-absorbency pads line the floor and a stool in the bathroom in anticipation of the blood from Brian’s open wounds. The bandages from the day before must come off, but it’s not always easy.
“Is it stuck? Do you need some tickle water,” says Diane Brayer, Brian’s main at-home nurse.
Being on for 24 hours, the dressings can become embedded in Brian’s skin, but Brian doesn’t take any pain killers for his EB. “My butt hurts so bad, as weird as that sounds,” says Brian.
Brayer sometimes lets Brian unwrap his own bandages, but when they become lodged, Brayer gives him saline to help loosen the bandage. On Fridays, the atmosphere is more relaxed during the dressing change, but on any other school day, Brayer says the nurses have to be more aggressive about getting through the change quicker. The pain Brian experiences during the dressing changes varies from minor to extreme, but he takes it all in stride. “He’s a good trooper about it,” says Brayer.
Once Brian’s bandages are off, his nurses have to get him in the bathtub, but being completely naked, Brian is extremely vulnerable during this stage. If Brian has blisters on his knees, he can’t bend down to get into the water. “If he even slips a little – he has no bandages on. You’ll tear the skin right off of him,” says Brayer.
Brian likes to get in the tub when it’s dry and have the water fill up around him.
“Do the Brian Jig,” Brayer tells Brian.
Brian wiggles left and right to help the water glide over him.
“I’m too fat,” Brian says in the tub. “I can’t get my stomach in.”
“You’ve got a little Buddha belly, Brian,” says Brayer.
Brian responds with Katy Perry lyrics – “Skinny dipping in the dark.”
Brian soaks in the tub and is gently rinsed with Cetaphil. Instead of exfoliating, the nurses add diluted amounts of rock salt and bleach to the water to help with the debridement process. Debridement is the medical removal of dead skin to promote healing.
The key to the dressing change is to pop any existing blisters and cover all his wounds. After the bath, Brian’s nurses help him into his bedroom where the dressing change takes place. “I have two favorite parts of the dressing change,” says Brian. “One is playing with my friend Joseph, and the second part? It’s coming up.”
Brayer preps Brian’s back, buttocks and shoulders with bandages, and he plops backwards onto his bed. Then he pulls out his phone to play Minecraft virtually with his pal Joseph.
Each dressing change is slightly different from the last.
Brayer snips Brian’s bandages into different shapes to match the wounded parts of his body.
“Look, a Christmas stocking,” says Brayer holding up a bandage cut in the shape of a boot.
“Brian, how many days until Christmas?”
“Seventy-seven days until Christmas. So you tease me by making a piece of a stocking? A white, fluffy stocking?”
The nurses use two different bandages – brown Mepilex Lite and white Mepilex Transfer. Brian explains how the white bandage “absorbs more stuff quicker.” “And the brownie absorbs less stuff slower,” says Brian.
Brian’s nurses have to be careful about the bandages sticking to him. They used the white transfer on his knees in the past, but it got stuck. Now, they only put it on his thighs and hands. It’s softer and more pliable which makes it easier to mold. Brian’s nurses apply Aquaphor directly to his skin before they put the bandages on him.
“Ow, ow, ow,” Brian’s voice can be heard from outside his bedroom. But this time, he’s not complaining. He’s just playing Minecraft. “Joseph, can you get me some wood? ‘Cause I need sticks to make a shovel.” The video games help keep him distracted during the dressing change.
“This is the best time to pop a blister,” says Brayer. “If I don’t pop ‘em, they’ll be twice the size by tomorrow.”
Insurance covers a large portion of Brian’s medical care and supplies, which is critical for the Ilgs. In order to prevent the spread of infection, Brian’s nurses use a different needle to lance each of his blisters, which average about four per dressing change. But needles are on the low end of the cost spectrum. Other items like the Mepilex Lite foam bandages cost $20.10 each, and using eight per dressing change can quickly hike up the bill.
“His medical supplies can cost up to 10,000 a month,” says Arlene.
List based on Arlene Ilg's monthly supply order for Brian's epidermolysis bullosa dressing change supplies. Prices provided by Health Care Information Technology Medical-Surgical Supplies and Pharmaceutical Distributor: McKesson (formerly National Rehab). Jennifer Levasseur, R.N. assisted with item descriptions.