Sunday, April 3, 2011

Bring on Hollywood!

Disclaimer:  The following material may not be suitable for the faint of heart.

My oh my, where to begin?  Well, Logan is now a part of the latest Hollywood rage...colonic irrigations.  Unfortunately, his irrigations aren't to get "red carpet" worthy, but to prepare his little bowels for his pull through surgery in June.  The doctor originally thought suppositories and enemas would be the recipe for success, but apparently even those aren't enough to keep Mr. Logan clean and clear.

Let me back up (ha...no pun intended...let's just say the jokes are endless around our house lately!) to last Monday.  After his morning bottle, Logan didn't want anything to do with food.  You've seen his thighs so you know this is not typical.  I ended up staying home on Monday because Sally was sick, and over the course of the day, he only drank that one 8 oz. bottle and 2 jars of baby food.  Olin had a late dinner that night for work and I was finishing taxes with his mom, so unfortunately, I did not give him his suppository.  Olin's dad stayed home with the baby the next day, and it was more of the same.  We'd put the bottle in his mouth and he'd just sit there like he didn't know what to do with it.  He'd occasionally thrust his tongue around it, but that was it.  Was it possible that he had forgotten how to suck?  I have to tell you this is my biggest (well, one of) fears about Logan and his syndrome- that he will just one day forget how to do some of the things he used to be able to do.  I've read stories about kids who were doing lots of things...babbling, socializing, etc. and then all of the sudden, one day, they couldn't do it anymore.  This thought absolutely terrifies me.  I can't imagine all of the hard work and successes erased in one instance...how heartbreaking.  (If you have read these stories, please don't pass them on to me..ha).

Anyways, I ended up taking Logan to the pediatrician Tuesday afternoon just to be on the safe side.  He didn't have a fever, no vomiting, no diarrhea (the kid's never had that in his life), no ear infection, a little bit of a red throat, but that was all she could find.  During our nightly poop-a-thon, we gave Logan one suppository and two enemas....and NOTHING came out!  Is that even possible?   Well, by 10 P.M. Tuesday night, "mother mode" kicked in and I told Olin I thought we needed to take Logan to the ER.  All I could think about was how the debacle of his Exploratory Laparotomy began...by his not eating...and look where we ended up with that.  I knew Olin wasn't completely convinced that an ER visit was necessary, but he said he'd go with what I felt in my gut...and my gut was saying something was wrong!  If it turned out to be nothing, oh well, I would swallow the $100 co-pay.

As much as I hate going there, we are very lucky to have Children's Healthcare not too far away.  The wait wasn't long and we had Logan in a room pretty quickly.   (Side note: Over my spring break, I definitely am planning to write some literature about Logan...like a one page synopsis of Logan's medical history, including dates, doctors, background info on Mowat-Wilson, etc.  I can't keep up with it all and just having a sheet to hand out to people would answer 99% of their questions).  So...I immediately felt like the ER doctor thought we were crazy to have brought Logan into the hospital.  He was kind of like..."Oh, he hasn't eaten for 2 days? Yeah, kids do that.  Eventually he'll get thirsty enough that he'll start drinking again."  Seriously???  The on-call doctor I had talked to earlier actually suggested it could be a fungal infection in his esophagus because of the continuous antibiotic he's been on for his ears.  The ER doctor dismissed this right away..."I have no idea why he would think that."  That is when I get so frustrated with doctors.  Finally, he decided to do an x-ray of Logan's abdomen just to be sure there was not an obstruction or blockage.  Result:  No obstruction...just a lot of backed up crap!  After that, I insisted on showing the doctor how Logan was refusing his bottle.   Well, if the little booger didn't just make liars out of us ...he immediately began drinking like it was no big thing.  It was like when you bring your car into the shop so they can hear the funny sound it's making, and then you get there and there isn't any sound to be heard!  With that, the doctor sent us on our way.

I knew Logan's surgeon wouldn't be happy to hear that he was still so constipated even with the enemas and suppositories.  I gave him a call Wednesday morning, and within a few hours we had a "Disimpaction" surgery scheduled for Friday morning.  Basically, the doctor wanted us to begin colonic irrigations since the enemas weren't doing an adequate job.  However, he didn't think they would be as effective if he didn't just go in and clear Logan out once and for all before we started the new routine.  Of course, during this "shitty" week we were having, it was one of Olin's busiest at work...the week before the Final Four.  It was also the week before my spring break...great timing, right?  Luckily, my mom was able to come down on Thursday to help me take Logan to the hospital on Friday.  Oh yeah, and I had a stomach bug on Thursday and Friday to cap it off.  I couldn't even drive us to the hospital, and I slept more in the hospital bed than Logan did!

The surgery went well.  It's a little misleading to call it surgery because no incisions were made.  However, he did have to go under anesthesia.  The procedure was really quite simple...the doctor extracted as much "stuff" as he could manually, and then flushed 2.5L of fluid through him to make sure all systems were clear (I warned this was not for the faint of heart)!  Logan is such a little trooper though.  He was a little agitated coming off of the anesthesia, but other than that, he was back to normal within a few hours.  I think the whole thing was a lot worse for me than it was for him!

So now Logan joins the Hollywood elite with his participation in colonic irrigations.  This is the fun part...Mommy and Daddy now have to "irrigate" Logan twice a day (once before I leave for work at 6:30 A.M) and once before bed.  I think we are going to make a paper chain and cut a link each time we  perform our duty : ) We have to keep up this routine until his surgery in June.  I know you're dying to hear the details of this dirty task so let me proceed.   By the way, there will be no Youtube videos documenting this part of Logan's journey!

We really are trying to make the best of the situation and find some humor (bathroom) in it all, but it sucks.  That's the truth.  There are thousands of things I would rather do than give my 15 month old colonic irrigations twice a day.  Luckily Olin has a positive outlook about the whole thing and we've been able to laugh a lot which keeps us from crying : )  Olin is the "tube feeder" and "syringe squeezer" while I am the "leg holder" and "pet pad rotator".  Let me try to give you a visual picture here....

Olin and I are outfitted in gloves (and soon to be masks, I think) while Logan lays on a changing table pad that is wrapped in a dark garbage bag and layered with three doggy training pads.  We turn Logan on his side so that Olin can feed an 18 inch long red catheter up his booty (it's the craziest thing to watch this little tube disappear until just about an inch sticks out!)  Then Olin shoots 2oz of saline solution into the catheter and we let it drain out (isn't this fun?).   Then Olin shoots 2 more oz. of solution.  We repeat this pattern 12 times for a total of 24oz of fluid being flushed through Logan's little (well, big) intestine. It's not pretty...it smells like shit...but bless his little heart, Logan doesn't cry a bit.  Most of the time he's wiggling his legs in excitement or anticipation.  I think it must feel so good to have his system so clear.  There is no telling how badly his tummy has been hurting all of this time!  We timed ourselves last night and the whole process took about 30 minutes from start to finish (of course, Lo needs a bath or at least a good rinse when it's over).   By this morning, we had improved our time to 17 minutes.  Olin says we're like a pit crew at Nascar : )  Hopefully, with a little more practice, we'll be down to less than 15 minutes.  Luckily this week is spring break for me so we have a little extra time to do the deed in the morning.  The first real test will be when I go back to work and I have to wake up both boys at 6:00 in the morning to irrigate.  The second big test will be when one of us is out of town or has to work late.  This definitely seems like a two man job so it will be interesting to see how one person manages the task.  Maybe we'll build Logan some baby stirrups  : )

So,  in a nutshell, that has been our week...shitty, crappy, whatever you want to call it.  But for now (until June) ...it is Life As We Know It  : )

3 comments:

Unknown said...

You guys are seriously great parents! Did CHOA tell you about their 24 hour nurse line- 404-250-KIDS? Some of our parents at work utilize this and say it is a great resource! Love you guys.

Kelly allen said...

If Olin is ever out of town call me to come help. I'll bring wine!

The Arnolds said...

Thanks Kelly! I may take you up on that...Olin is going to be out of town quite a bit in the next few months : )

Mary, I didn't know about that line...I will check it out! Love you!