Musings from an Orthodox Jewish work at home mom of twins with Autism Spectrum Disorders.

Archive for the ‘Megacolon’ Category

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.

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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.

Another Poop Success

my 9 year old enco/megacolon gal felt an impending bowel movement coming! “I have a poop stuck in my butt” made me happy. It went in the toilet, y’all! Second time in 2 months. I still think we’re leaning towards cecostomy at this point, but I still take pleasure in knowing that 2 poops in the past 2 months got past her lack of RAIR and anal manometry doesn’t show the whole picture. Woot!

It Wasn’t Poop Time!

I caught my 9 year old Wilma FIDGETING (doing a poop dance)—- she NEVER EVER does that— her only toilet poops are scheduled (always happening after dinner when I TELL her to go) or enema-ed (if she doesn’t poop after dinner I HELP her poop after dinner). This one was enormous enough (thanks megacolon) that her lack of RAIR (failed two anal manometries) somehow picked this one up— she had to poop! It wasn’t even dinner time yet!  Did she register that? No— she still got a little in the underwear but I told her to run to the toilet and get the rest out and whammmmo! Go girlie! woot!

Apparently there is SOME nerve ending power there— it just has to be SUCH a massive bowel movement that it would explode the colon of almost anyone else for her to feel the urge.

Here’s a post I’m not sharing to all of my facebook friends.  If you’re following this blog you either know me super well and I’ve invited you here (and you’re good with poop posts), or you don’t know me at all because we’re anonymous here. 🙂

I’m pooped

Wilma failed her second anal manometry today.  This is after spinal MRI, Four xrays, countless cleanouts, countless cases of enemas, daily probiotics, daily fiber supplements, daily colace, and a partridge in a pear tree.

Basically we can clean out her colon (at least the bottom part right at the rectum with enemas) but we can’t KEEP it cleaned out and there is nothing we can do to clean out the top part of her intestines—– so we can get the encopresis under control if her megacolon is so out of control that she poops on command on a toilet once a day because it’s “poop time” (but has NO RAIR) (RAIR is the anal reflex that can be measured by manometry—– she failed her second manometry today— think of your knee getting hit by the reflex hammer and your leg automatically moves—– when anything is in her rectum, her anal reflex does nothing).
OR we can fix the megacolon by either cecostomy or perhaps going back to top down miralax type methods which will put her back in pullups and diahhrea 10-17 times a day. As a 9 year old, going back to pullups might be medically a good idea, but psychologically TERRIBLE. The manometry doc likes the idea of fixing the megacolon. The psychologist likes the idea of leaving the megacolon as is and keeping her with no RAIR and never knowing a poop is coming. (fine as long as she’s so regular that she NEVER poops other than poop time and NEVER gets sick with diahhrea—– every time she gets diahhrea she’s back in pullups and all bets are off—- we want her to go into adulthood using pullups every time she poops off schedule?)  The GI doc might be able to talked into cecostomy. I’ll keep you posted.
googling cecostomy and it doesn’t seem terrible but requires an hour on the toilet every night while the saline runs through. Wilma will enjoy all that ipad time— lol.

Is It Possible?

Is it possible that the twins have stayed on the same meds for a while? Fred is on Risperdal and it’s working fairly well!  Wilma is on adderral and geodon (and all the poop meds— enemas, metamucil, colace, probiotics, etc) and….. it’s working fairly well!  Is it possible that Fred has had ONE toilet accident in the past many months (not counting night-time)?  Is it possible that Wilma (only so far through great scheduling and enema timing, etc) only has one accident every few weeks or so?  Is it possible that Fred is down to biting once a month?  Is it possible that Wilma is down to massive tantrumming once a week?  Is it possible that Wilma’s whining and impatience doesn’t bother me so much anymore BECAUSE things are so much easier in general?

And the BIG ONE—- -because the Jewish camps aren’t affordable (as if I could afford two camp tuitions AND two one on one aides) and the special needs camps aren’t affordable (the past four summers we sent them to the ONE affordable special needs camp on this side of town and it got worse and worse each summer—- AND they tripled their price— so now it’s babysitting, not camp— AND too expensive)——– I’m doing CAMP MOMMY and it’s going halfway decently?????

So far we’ve done playgrounds, science center, out to lunch, out to ice cream, spraypark, mall, chuck e cheese… and we built a swingset (they helped me drill!). cooking, baking— Wilma thinks challah dough is a great sensory activity. gonna put up a basketball hoop next week and then we’re getting either a trampoline or a pool (Wilma keeps changing her mind). later in the summer we’re doing piano lessons, and we’re keeping up the limudei kodesh tutoring. We’re down to 3 ABA sessions a week and up to 2 speech therapy sessions a week. Most of my work I’m doing after they’re in bed (and still making decent money, amazingly), but for a few hours a week they come with me to my local sm client and they play with the ipad and read while I work. On the docket still to do…… bowling, library, playground world, and lots of the area playgrounds. We’ve played a few games, read a bunch of books, done some coloring/painting/etc— and so far in the past 15 days have watched ONE dvd— my daughter is NOT good at sitting and watching, lol. TRYING to get them to ride bikes with training wheels, but our gross motor skills are kinda rocky and that’s definitely a non preferred activity (double meltdown fodder). They DO like their scooters though. Here’s a funny—– one twin got a TONNNNNN of summer homework and the other twin got none. So unfair— that’s the icky thing about them being in different schools.

And the zoo. how the HECK did I forget the zoo? and I’m getting braces again so soft food for mommy will be a theme— lol.

I hire help, I utilize my hubby who is off all summer (hello, I’m the only income all summer— you will play with kids when I wanna work, k?) and SOMEHOW, so far so….. GOOD?!?!

BARUCH HASHEM for ABA (6 hours a week for Wilma these days— still waiting priority on the waiver wait list for Fred) and the right meds…… and for these monsters getting older and more mature!

Also?  Also?   Wilma can walk a mile with no stroller now!  HA HA HA HA!!!  Every family walk does NOT involve her flopping down and refusing to move!  (as long as SHE picks the route).  Bye bye hypotonia— you don’t rule our lives anymore!  I might sell the fancy expensive special needs stroller soon!

 

Eight Years Old: The Official Update

All in one post because I’ve been ignoring this blog (what else is new?) while I get busy with life.

First, her encopresis/ megacolon.  We’re stuck.  We are down to one normal sized bowel movement a day  (thank GOD!)…. AND STILL the random soilings as well.  When she soils we make her sit on the toilet, get the rest out, and be calm while we wipe her and change her.  Every night after dinner she needs to produce on the toilet.  If she doesn’t, she gets an enema.  That was all fine and dandy until recently she decided she no longer wanted enemas so the threat of an enema produced a meltdown.   A 30 second procedure shouldn’t involve an 8 year old screaming for twenty minutes. Wishing there were better options. But when you’re left with very few options after trials of other stuff, (Miralax brought her back to the 10 to 17 soilings a day, new poop around impaction— she got re-impacted on Miralax) and the kiddo becomes less and less compliant, and older and stronger…… ugh. Sadly, it used to be a breeze to get this done.  She is not at all impacted.  She is on probiotics and metamucil every day.  I have NO IDEA when her nerve endings will decide to tell her brain that a poop is coming and SHE will initiate a bowel movement in the toilet without being scheduled or enema—ed.  But when that day happens, it’s party time.

Second, my husband was in the hospital for six days recently.  2 kids, 3 pets, laundry, dishes, trash, bill paying, kid appointments, etc depended on me alone that week. I had strep throat TWICE that month. Mommy doesn’t have time to get sick but get sick she did anyway.  He was in for a horrendous abdominal abcess— we have no idea what caused it but he needed six days of IV antibiotics and a couple weeks of oral.  He’s fine now— some residual pain if someone bumps into him in that area of the body– should take a few more weeks and he’ll be perfect.  waited a long time with 2 autistic 7 year olds for my appt at minute clinic. I got diagnosed with strep again. got my antibiotics, got in my car to go home, and…. minor car accident, my fault. I tapped a car while pulling out. So then there were two autistic 7 year olds screaming in the back seat because we weren’t going anywhere— the other car was a woman a bit older than me and an elderly man. The woman was trying to calm the man down by taking a photo of my insurance card and license but she didn’t feel there was any need to call the police— it was a tiny scratch on their car. The elderly man told me I shouldn’t have a license. Then out of nowhere he fakes a fall. He wasn’t even in the car when I hit it. He was standing next to it. All of a sudden he falls down. I burst into tears because I have a husband in the hospital, strep throat which hurts like heck, and two screaming kids. So the woman says they won’t call the police. Right then in the four minutes I was crying, of COURSE I saw someone I know. Long story short, they did NOT file a claim but MAN what a day!

Next, I got my TMJ splint. After six facial surgeries, upper jaw expander, braces, and retainer, I now have TMJ.  I need six months of splinting and then braces again.  So far, I’m taking it out every time I try to talk on the phone. You’d think I’d be used to orthodontic craziness but it’s been decades.  Good luck understanding me when you see me.  I sound like Cindy Brady.

My kids had winter break for 2 weeks. They have drawn armadillos playing the violin. They have watched youtube videos of “Fergie” as Stacy Ferguson from Kids Incorporated in 1984 (I totally remember “Fergie” as a child and they didn’t believe me). They have picked each other’s noses (I never said my children were normal). They have visited two different hospitals, watched me get tested for strep, gotten themselves tested for strep, been out to lunch and for ice cream, been to ToysRUs, been to the post office and the grocery store, and begged incessantly for ipad time. We did (try to) watch one movie—– my blood pressure is still high from that event (MOMMMMMMY CHANGE THE CHANNEL!). School came back again and sanity was restored.  But when you transition autistic kids back from winter break, a snow day is sure to hit.  then a four day weekend (Friday was teacher in service day and Monday was MLK).  Next up?  Spring break.  Kids are both having a REALLY rough time getting back into the swing of things…. psychiatrist thinks it’s still from transitioning back from winter break and doesn’t want to make med changes yet.  CURRENTLY he’s on risperdal which had been working well till now, and she’s on adderall and geodon.  Switched to geodon from abilify which was making her gain weight.  Not sure if i’m hating the geodon, or hating that we just had winter break.

And finally, Fred might be a panda.  🙂  In a neurotypical child, if mom gets strep throat twice and has both kids tested to see who the carrier is and one kid is a non symptomatic carrier of strep and gets two antibiotics, gets tested again, and no longer has strep, you’d be done.  In MY child, since I don’t know whether his behavior increases lately are from winter break or from strep causing PANDAS (I’m too lazy to explain it– please use google) since he acts a LOT like a PANDAS kid, he’s now about to do a month of a third antibiotic— PANDAS protocol with our pediatrician’s office.  If it helps his behaviors, we look into a PANDAS diagnosis (would that help him move up the medicaid waiver wait list so he can get ABA sooner?  hmmmm).  If it doesn’t, then hey— at least we know he’s no longer gonna give me strep again (which hurts like a bitch in a grownup, by the way!).

I’m working more recently.  Aside from Mary Kay and Send Out Cards I also have a small social media business.  Just one of my social media clients wants me for at least six hours each week.  Financially, yay.  Housework wise?  bleah.

Oh and Fred, dear sweet Fred.  BIG meeting tomorrow with the IEP team and the head of gifted for the whole district.  They are now giving as much attention to his IQ and his gifted identification as they are to his autism and at this point, they need to differentiate his instruction more than is comfy. I’m not sure they’ve ever seen such a low functioning kid (psychiatrically, behaviorally, socially) who is so academically advanced.  I just don’t need to be told that it’s the highest IQ they’ve seen in many many years when the boy still poops himself from time to time, ya know?   On the table is skipping a grade (I’ve said no before, but they’re starting to convince me, if they keep him superglued to an intervention specialist who gets him), a gifted program at a different school, or a really individualized program.  I’ll know more tomorrow and I will try not to wait two months to blog again so you all can catch up.  As for Wilma, she’s not gifted, doing fine academically, and will stay at her current school in the correct grade.

Now— kids are back in school.  No more hospital for Abba.  No more strep for me.  Can my life please get boring again?

Oh yeah, they turned eight.  Woot!

 

 

 

 

 

 

 

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