Yeah, no, not really. I have ZERO spare money and ZERO spare time, plus a master’s in education I’m not even using.
I just mean that in the past month, I’ve learned about appendicostomies, cecostomies, exudate, fibrin, and all sorts of fun stuff!
Wilma had her cecostomy on January 16th, a month ago. Technically, an appendicostomy— though she has an AMT mini one button at her appendix instead of a tube in her belly button. Don’t ask me how the tube goes through the appendix to the colon or why—- I’m not on THAT semester yet. What I DO know is that after the first few flushes and first few tweaks of recipes (some kids need glycerin, some don’t…. some need golytely, some don’t…. some need a lot more saline than others….. sometimes you feel like a nut, sometimes you don’t)…… every flush started going beautifully. With the flush solution, she feels a bit of an urge—– after the first flush (every flush is at least two flushes— one with glycerin and then one without)– -she often fidgets— wow! So after the glycerin/saline mix is when I have her sit on the toilet. Whammo. No more poop for two days. Perfectly clean underwear at school. What goes in the toilet….. GETS FLUSHED DOWN THE TOILET! In the final year before cecostomy, I couldn’t flush her stuff down the toilet— -whatever I enema-ed out of her into the toilet had to be removed and thrown out. Megacolon. So the point of this is to heal her megacolon— -if her stuff isn’t thick enough to clog the toilet, we’re on the right track. The other point of this is to keep her clean at school and only pooping at home since she never has an urge (except right after a flush apparently!)—- and we’re on the right track there too.
I could write pages about how difficult it was to track down a dme company who would provide gravity bags, connector tubes, extra buttons…… on Wilma’s insurance for this type of surgery. I won’t. You’re welcome. I could also write pages about how insurance won’t cover glycerin (don’t worry, it’s inexpensive), and how a case of saline is heavy and cannot be delivered— I must go pick it up (from the hospital, so I can pop it in a wheelchair— once a month I get to WHEEL a case of saline out of the hospital pharmacy… wheee!). I won’t do that either.
What’s unusual and a little fun is that her healing is quite unusual. For the first couple of weeks after surgery, she had stitches. I couldn’t move the button. I could clean around it, but couldn’t rotate it to see the hole underneath. When we went back to the hospital to get the stitches out, it was noted that one stitch was gone (I had no idea even though I was cleaning it daily) and the button and other stitches had tugged the skin in the wrong direction just enough that the appendix dropped a bit and now she’s got a nice big bloody raw crater under the button. That’s going to be some scar. Anyhoo….. now I rotate the button five times a day, cleaning in the crater, picking the exudate and fibrin out with little picker thingies, drying well, packing the crater with gauze, and gauzing around the whole button. ok, not five times a day— on a school day the school nurse does it once a day. ok, not even four times a day— I do it before school, after school, and before bed— I just don’t have it in me to force the issue one more time. Nope, insurance doesn’t cover enough gauze. Yes, I’m using a ton every day. No, the hospital refuses to give us enough. Whatever, that’s inexpensive too. It’s healing very slowly— I had no idea how long an open raw bloody wound could just stay open and packed with gauze— what’s fun is the exudate and fibrin—- it LOOKS like infection— it’s fascinating to remove the yellow goo a million times a day, show the nurse at every appointment and have her tell me that’s how we WANT it to look and it’s NOT infected. Every now and then Wilma will peek at the gauze and be totally grossed out. Usually she lies on her bed with the ipad in front of her face and I get the fun job. The hospital had us coming back twice a week, then once a week, and yesterday we were finally bumped to every two weeks. hooray! So if I don’t post here a lot, I’m busy packing wounds with gauze, running glycerin and saline through a colon, checking output against the bristol scale, and… oh by the way, still doing a bit of direct sales (and a bit of babysitting too, because my friend needed me and hey– it’s fun!).
Today for the first time since surgery a month ago, she couldn’t make it through the whole day at school. Stomach pain. A typical kid would sit on the toilet and poop. Her poops really don’t come anymore at all without a rectal enema or a flush. And who knows if it was an actual urge to poop (doubtful) or just tummy pain due to all this stuff running through her colon. I took her home and flushed her and let her nap. She’s better now. That will happen once in a while but otherwise we’ve been lucky—- she doesn’t have to clamp for 10-15 minutes during the flush due to cramps, she doesn’t leak outside of flush time (I mean poop wise— she DEFINITELY leaks yellow gunk from the crater), and the wound healing is going okay.