Day 63 – isolation

I write about EB here because that’s what I know. Much of what I experience, however, is not limited to families who have EB in the mix. Having a child with special needs of any sort can be mightily isolating.

“Can be.”

That makes it sound like it’s not an “always”, and that’s true to some extent. After all, we have our teeny tiny circles of friends who really try to get us and what we walk through. Many of us have people walking the same path. We find the folks who genuinely care, and we recognize the ones who surface-care.

I would put forth the idea that special needs IS isolating much of the time.

EB is definitely isolating.

There are things in my life that the vast majority of people will never understand. I know there are things I will never understand about others as well, but my hope is that this journey we’ve been on has made me more compassionate and more willing to go the extra mile to understand others and where they come from, where they are at.

Today we have to have a bath and bandage change that will likely be a special kind of awful. Julianne’s legs are crusting over with some sort of nastiness, and while we are used to the “normal” gross of EB, this is something different and new. In five years I’ve not seen anything like it on her. If I were a picture-posting person, you’d be grossed out. I promise. If I were a video-posting person, you’d get to listen to the soul-crushing screams as we care for her skin. You’d be able to see with your own eyes as she shakes with pain and grits her teeth. It wears a person down. It has worn me down.

Today will be bad. I know it will be. There is no amount of nice words or platitudes that will change it. Today we will need to de-crust her legs. Thanks to the online EB community (‘lil shout-out to these peeps who are my peeps for LIFE) and all of their vast knowledge for giving me a few suggestions to try out. Our hope is that we avoid having to have this done in a hospital type setting. So, here’s the plan.

  1. Medicate. Her, not us. This process is not going to feel lovely for her. So pre-medication is on the books.
  2. Clean. Duh. That’s every day. I’ll scrub the tub and bleach it shiny clean for her to use. Also wipe down massage table that has never been used for massages but makes a dang fine bandage changing table. (side note: when people share about getting a massage I giggle because I haven’t had one of those in I don’t know how long but I have a table in my house I use every day. Irony.)
  3. Remove bandages. This is her job. She has control & it works better than way.
  4. Saturate sterile gauze squares with a new cleanser we got last weekend and apply to her legs for 5-10 minutes. 10 is better, but she may not tolerate it. This stuff should help lift up the crustiness so that it can be debrided more easily. We shall see.
  5. While soaking, run bath water. Add salt (so that the water doesn’t burn as much) and bleach (to kill the bacteria).
  6. Debride skin. Refer to google to see what this means if you don’t already know. This will be the least fun part. She HATES HATES HATES anything touching her legs. It’s a scream fest on a normal day, today will be worse. The crust HAS to come off. I’m hoping that the meds are in full swing by this point, though the best they can do is slightly blunt the pain. It’s Level 10 stuff, this pain, and it sucks.
  7. Wash the rest of her, rinse body off with saline because the regular water hurts like hell and so I rinse her with saline which doesn’t.
  8. Get out of tub, pray that the treatment has worked, and re-bandage while watching her look at me with eyes that understand that I have to do what I’m doing which somehow makes it all worse.

If it doesn’t do enough I’ve got two more options to try out. One should arrive tomorrow, and one we’ll try over a weekend because it is pretty messy.

I feel like this.
A rock in the middle of nowhere.
Having to be strong, watching the storm approaching.

So yeah. This life is isolating. I’m typing all of this out and knowing at the same time that people will hurt for her and hate that she has to deal with this. People will hate that we have to handle it. People will pray for her, but ultimately, no one else is here and no one else will know the horror of it all other than those people who also deal with the same thing. Being the one to hurt your child so that they can heal is the sh*ttiest thing I can think of, and if I sound raw and emotional, it’s because I am.

Truth is, I don’t even want to talk about it with anyone. I just want to scream obscenities and then sleep. That’s all. Scream & sleep. Unfortunately, it won’t help, so I don’t, but that’s what I’d do if I could.

Everyone has their THING. I hate that there are so many THINGS in the world. All anyone wants is to be understood by the people who mean something to them, and for the most part, I have that, and I am grateful.

Now I’ve gotta end the emotional vomit sesh so I can go make dinner.

Peace out, peeps.

Day 62 -good/bad

We used a new type of base layer on one of Julianne’s legs yesterday. It worked really well (I’m hoping I can get our DME company to send it!)

That’s the good news.

The bad news is that she has a lot of crust looking stuff all over her legs. One of these days we’re going to have a fancy Microsilk tub that will help debride all of that from her, but for now, we don’t. This means that the chance of bacteria growth is way higher than when she’s crust-less, and it’s actually increasing in amount. Could be why she’s been struggling with some wound healing. Actually, it probably has a lot do with that that.

Anyways, if you want to be grossed out and terrified, google “methods to debride skin” and there is where I am. I’m going to try out a version that a fellow mama to kids with EB (and an EB warrior herself) suggested to see if we can avoid the more intense versions of debridement.

And, there it is. Happy Wednesday.

Day 61 – delivery day

When you get a text message saying you have a Fedex delivery coming later in the day and you know it’s 4 cases of the one type of dressing you never seem to order enough of you get all kinds of excited.

Hurrah for delivery day!