DME Fun

After many hours on hold and many phone calls over the past month, Wilma’s DME will no longer provide us with supplies for her cecostomy. Need a company willing tp provide AMT mini one (or Mickey assuming they’re interchangeable), gravity bags and connectors, and gauze. Apparently this isn’t the only company having trouble billing Wilma’s insurance for cecostomy supplies—- the companies only want to deal with enteral patients. So now I get to call all the DME companies again like I did the week she had surgery 6 years ago. YET ANOTHER REASON I’M EXCITED TO MOVE FORWARD WITH ANOTHER SURGERY for her to get rid of this darn cecostomy. Hoping for ileostomy within the next couple of years. In order to do that, we go back to the specialist in May and then move forward with colonoscopy and colonic manometry on an autistic 16 year old—– and this is the easier part of my life with two teens with special needs.

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Wilma’s Poopy Life

Wilma is 15 now and had her cecostomy placed five years ago at age 10.

No regrets, but in our case I wish we’d done colonic manometry first and not just anal manometry. Because in our case, the encopresis is controlled via cecostomy (we force a BM out every night on the toilet via cecostomy flush) but the megacolon is still super super severe and we should have ideally gone straight to ileostomy or re-sectioning rather than spend five years on cecostomy first– she COULD go on forever with cecostomy but she still has no anal reflex— NO feeling of an oncoming BM so it’s not like cecostomy is healing her colon or shrinking it at all….. it’s just keeping her out of diapers. Also she has ZERO interest in learning how to measure the glycerin and saline and get it in the gravity bag and get the bag connected etc etc without my help— only me— she won’t even let my hubby do it…. so if she ever wants to move out of this house and away from me (PLEASE! lol)

So soon (within the next year ish?) we’ll do colonic manometry and colonoscopy and move towards re-section or ileostomy and focus more on colonic motility than on just keeping her clean. Fun times. My guess is that if we do ileostomy she’ll be much more comfortable changing and emptying the bag than she would be learning the intracacies of connecting to the cecostomy bag every night— it will give her a better quality of life– independence— ability to go away to college or live on her own someday. Of course, if re-sectioning and pooping in a toilet someday with no help whatsoever is a possibility (I sincerely doubt it) we’ll explore that as well!

With the cecostomy it’s measuring and all the flow getting stuck and connecting the bag to the connector to the body. With the ileostomy it’s popping it off and popping a new one one…. still a pain and gross, but it seems less involved to her. So…. we’ll see.

That Darn Colon

I had a GI appt for Wilma on Friday. The current update is….. no testing or procedures for the next year. Cecostomy use once a day on weekdays and TWICE a day on weekends. Yay, another reason for her to trigger her brother every weekend with her obstinate behaviors and fight with me about something. A year from now we start discussing resectioning and in order to think about that we have to do a colonoscopy. The fun of doing that (and colonic manometry to add to the fun fest) on an autistic 16 year old…… oh that will be a joy. As for her spring break this year, her friends went to CA and FL…. .she went to the dermatologist (kicking acne’s butt) and the GI doctor…….

I Need Another Surgery

This one will be #14 I think (I’m losing count).  This will be very painful, but a short recovery from what I understand.  This one is NOT kidney related.  Even though I’m sort of anonymous here, some of you do know who I am and I’m not sure I want to share surgery details this time– I’ll think about it.  If you know me super well, message me on facebook and I’ll tell you— I just don’t think I should put it out there for the world.  It’s a problem that I tried managing with medication and the medication made the pain  significantly better….. but caused another major problem.  I’ll see the surgeon on March 12th and then I’ll schedule.  Fun times.  During my hospital  VACAY (I get to NAP!  I get a break from chores and working on Wilma’s colon!) I will insist that hubby once again do Wilma’s colon— and once again he will need training because he hasn’t done it since once the last time I had surgery.  Remember when I said we’d only be using a cecostomy for a couple of years?  I lied.  There’s no way we’ll even TRY to wean until halfway through high school at this point according to the specialist.

Playing Catch Up

Trying to catch up on this here bloggity thang.  Looks like I never updated y’all about the school situation?  Wowza.  Was too busy living it to blog it.

Fred was kicked out of public school.  Suspension after suspension after suspension— multiple emergency IEP meetings where they granted us a 1:1 aide just for 30 days even when I warned them it should be an rBT supervised by a BCBA and it should be the same aide…..  suspension was not a deterrent, his impulse control got weaker and weaker, and his desire to GET to stay home from school got stronger so he would punch teachers on purpose to GET suspended.  “Our policy is” are my least favorite words.  The district now spends thousands to send him to a behavioral school.  I LOVE his new (not so new anymore!) school.  THEY NEVER SUSPEND.  THEY WORK WITH BEHAVIORS.  I’m thrilled.  This school goes through 12th, but they’ll attempt to pull him back into public much sooner.  Momma bear will be ready to fight again for no suspensions for autism related behaviors.  Suspend a kid in a wheelchair for not trying harder to walk, why don’t you?

Wilma is doing great in public school.  So great that we tried to put her in a Jewish school with just a 1:1 aide.  Medicaid would have had to pay for at least 20 hours a week of the ABA aide— they weren’t willing.  Our state’s autism scholarship can’t cover a full time rBT and she can’t handle just ANY aide— she needed a behavioral aide if she was going to be in a school with no trained intervention specialists.  So— she stays in public.  GREAT, but her new middle school will be 1200 kids.  Already had the transition meeting and I’m cautiously optimistic.

Fred is on depakote and straterra currently.  Wilma is on adderral, geodon, all the junk through her C tube, and……..  birth control.  We had to stop the heavy periods.  On depo-provera she gets a normal period every 3 months instead of a heavy one once a month— it’s working fine and now she can wear underwear and pads during her periods and go to school and camp instead of stay home and fill pull ups with bowel movements that go completely whacko during heavy periods.

They’re in camp for six weeks— the ONE daycamp on this side of town that takes their medicaid waiver, works with kids like them, and is right for them.  He was suspended today and I had to have THE TALK with the director.  PLEASE PLEASE don’t get suspended again, kid.

 

I’ve Done All But One. You?

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I’m in Nursing School!

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.

Ch-Ch-Changes

Fred now has new meds on board— no more seroquel and we’re weaning COMPLETELY off the risperdal.  His new med?  Depakote.  No behavior changes yet (not good ones at least) but…… NO MORE ABSENCE SEIZURES!  I was on my way to the EEG merry go round but depakote saved us from THAT fun rabbit hole.  They just….. went away!  Ok so he still screams, bites, kicks, hits, screams, and …. yeah he SCREAMS…. but he’s usually in our world and not completely in la la land!  Those seizures were scarier and scarier as he was getting older.

Fred now has a new school on board— basically, he’s been kicked out of public school.  More suspensions since the last time I wrote.  More IEP meetings.  More frustration.  More “I want to AVOID due process” in my nicely worded letters.  He’s now in a small school in a small class….. which SPECIFICALLY works with kids with behavior issues.  It’s not a permanent fix.  The district likely won’t pay for this forever.  But for at least the next year, school is going to be a-ok.

Fred now has new therapists on board.  He got his waiver in July so this week we finally dropped his old ABA company for his sister’s company who hired a therapist for him who ALREADY KNOWS AND LOVES HIM!  Hoooooray!  Trying to get up to 8 hours a week.  Currently at 4, but better than nothing!

Wilma has her cecostomy surgery scheduled.  MOST days she isn’t crying from the anxiety of it and sometimes she’s even excited about an upcoming hospital stay.

Wish me luck— two weeks of winter break now, otherwise known as “can’t these people get along for 6 minutes?  And when the heck am I supposed to get anything done?”

 

On The Road To Cecostomy?

On the way to probable cecostomy our latest protocol has Wilma leaking like a faucet. My 9 year old is back in pullups and I go into public bathroom stalls with her to see if she needs to be changed. I carry adult size pullups and wipes in my purse. I just wanted to share here and say….. argh! Thanks. That’s all.

Nervous and excited about the possibility of cecostomy.  On the one hand, she will likely ONLY poop in the evening– in a toilet— during the time we run the flush through the tubing.  On the other hand, it’s surgery— it’s more drastic, and it might be difficult to get used to the lifestyle changes needed (an hour a day of sitting on the toilet, dealing with the tube….. oy.

During this protocol (NIGHTLY ENEMAS— EVERY friggin night….), the GI specialist is out of town.  For a month.  Out of the country.  Yeah, fun times.