Summer 2012, at least in terms of our break from school, is almost over.  I've been back at it since the 8th and I can honestly say I am ready to begin a new school year.  Summer is great and wonderful for the first six or seven weeks, but my family tends to get a little restless after that.  I'd just as soon trade in those few weeks we had of 100 degree temps for a week or two in October or an extra week in the spring.  I can dream!

Let me catch you up a bit on Molly's MACE surgery since I know that a few of my readers read my blog because we have spina bifida in common.  I would have loved to have had a detailed description of another person's experience with the MACE going into it, but I couldn't seem to find that anywhere.  I don't have any pictures to share as my Molly is 12 years old and wouldn't likely appreciate my sharing them.  But, I can describe the process if some of you are interested.

Our doctor had us check in to the hospital on Monday even though her surgery wasn't scheduled until Wednesday.  Molly endured a pretty rough time of bowel prep (which I had initially thought we might as well have done at home.  WRONG!) for about an 18 hour period.  Basically, she was given GoLytely in an incredibly large dosage through an NG tube.  The NG tube was awful.  According to Molly, it was worse than any IV she's ever had.  They had to do it this way so it would go directly to her stomach -- it would have been too much to try to drink.  Let's just say I was so naive about how this would work.  Thank heaven for good nurses and nurse aides.  Eventually the poor thing was just too tired to even make it to the bathroom, not that she could have made it on time every time anyway.  By mid-morning Tuesday, she was as empty as she could be!  After that, the tough part was staying on her clear liquid diet : (

Wednesday morning she was the first case.  Surgery started about 7:45 and she was finished just before noon.  We knew she would come home with a tube (catheter) inserted into the channel through her belly button, but we weren't expecting that our doctor would put a baby bottle nipple over it to secure it.  That was a stressful situation for my girl once she realized what that was.  I mean, how do you dress to hide that?  Soffe shorts and Norts and big t-shirts were her best friends.  Her pain was manageable (nothing like her neurosurgery two years ago), but it still hurt.  Molly is a trooper, though, and by Thursday afternoon she was ready to get out of her room for a while.

She was released Friday and we came home with what seemed like a pretty complicated care plan for the next couple of weeks.  It really wasn't.  We flushed the catheter twice a day with 30 CCs of sterile water and washed the belly button area with a solution of hydrogen peroxide and saline.  No baths, no swimming, and showers were a challenge.  The first few days home also saw a few accidents as her bowels were waking up.

Fast forward one month.  We checked back into Children's for an outpatient removal of the tube (and nipple!).  I was really nervous about how the site would look.  Dr. Canon was succesful in being able to use her bellybutton, but would it be altered in any way?  I am happy to report it just looks like her sweet little button and you cannot tell what's really going on behind the scenes. 

We have now begun the routine flushes to empty her bowels every other day.  We, well I, insert a 12 French catheter into her belly button and it follows the channel in about 8 inches until it reaches her large intestine.  Then, we connect the end of that catheter to a tube that extends from an enema bage.  We fill the bag with 300 CCs of water and hang it from the shower curtain rod.  Molly sits on the toilet while the water flushes into her large intestine (just takes about two minutes) and then waits for it to work its magic.  The whole process lasts less than 30 minutes and it seems to be working like a charm.  She hasn't had an accident since we started the flushes and she says it makes her feel good.  One possible side effect could be leakage at the site of the stoma (her belly button), but our doctor doesn't feel like we'll need to worry about that as the channel is pretty tight.  I can definitely feel that it is when I insert the cath.  All in all, we are extremely pleased with the surgery and I hope that things continue to go as well as the currently are. 

Molly hates having to deal with any of her SB issues.  I don't always realize how much it bothers her, but we had to figure out when she would visit the nurse during the day at school this year and talk to her teacher whose class she might be late to and she just clams up.  That's kind of funny because she is always kind of clammed up, but you can just see in her countenance that she's not wanting to deal with the situation.  I pray that as she grows up she'll have an appreciation for how unique she is and, in reality, blessed.  SB comes in many shapes and forms and she really is very fortunate.  Tell that to a middle schooler, though!

Now for some pictures...  Here a just a few phone pics from the past few weeks.  I'll just let you browse as I say goodnight and join my man in our room.  I probably won't sleep since I'm waiting up on PJB who is attending a friend's Sweet Sixteen tonight.  I let her ride with friends and am letting her return home with them.  I guess the years of waiting up for kids begins tonight!