Date: 10/05/2021

Q: My son (16 with EI) had to be hospitalized recently. We have had to get creative over the years because nothing can stick to his skin. He had to have a feeding tube and I wanted to share photos of what we created for him. It worked perfectly. Also, I took a picture of his IV with Coban and some gauze. Hope this helps someone.

A:

• Thank you so much for posting this! We are constantly trying to find alternatives for the stupidest little things like Band-Aids and temporary tattoos. I never even though about if my son ever needed an IV.
• Ask them (the Dr. or Nurse to use an IV finder it makes it so much easier to find the veins. If they don't have have one, then ask for an ultrasound vein finder.
• We haven't needed help finding veins in him, just in getting anything to stick to his skin. I was referring to how the OP dealt with the situation of attaching an IV to skin that doesn't work with adhesives. I myself, however, have my own rare disorder and have to have an IV team use the vein-finder on me every single time.
• Yes. That's awesome. I can't get doctors to understand how fragile our skin is. Glad you were able to figure out a way to handle the tubes and IVs and such. Poor guy, wishing him a speedy recovery.
• We also had to get really creative when my son with EI was in the hospital. Thanks for posting. Hope everything is ok and he is feeling well.
• So creative with the feeding tube. That’s a tricky one
• Hey, I make magnetic ear savers if he needs any more ideas to protect his ears.
• What are they used for?
• My son was in a school musical a few years ago, and all the actors had to wear small microphones taped to their cheeks. His wouldn't stay on. So, they finally made his character wear a hat all through the production, and that's what kept the headset in place!
• We have had that issue as well. One character ended up in a hat as well but we also created something for him in another show. We used a type of elasticated string/cording and wrapped a mic cord around it. It was hidden in his hair like a headband and the mic was on his forehead. All the women wore mics like this in our wigs.
• His character was an Alligator. There is a mic in his hat. I thought it was pretty creative.