the unexpected

We are home!  What a fun time we had!  But there were also a couple of unexpected things that came our way.

first of all, The Museum.... not free this month with your zoo pass.  Yeah.  oops.   somehow in the process of trying to renew our zoo pass online.I came across this page and didn't read the tiny date of 2011.  Oops.

So we show up and show our zoo pass and they look at us real funny.  Long story short, we ended up buying a Children's Museum family pass because after 2 visits with 7 of us it pays for itself.  They did give us $10 off for the mix up.  Why that page is still online is beyond me.

The kids had a ball at the museum.  We took 2 strollers, but Owen got out at each exhibit and walked around.  Eric commented he probably walked more Monday than he had for the previous 6 weeks combined.  It was good to see him on the move.  I can tell his left leg is still weak and his balance is off, but he did great.

We took our time and explored every exhibit over the two days.  Learned a lot along the way.  Oh, and we even got school done in the car on the way up and Tuesday morning in the hotel!  Love that.

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The appointment.

Tuesday morning I dropped off Eric and the kids at the museum and Owen and I headed back to Riley.  Owen, who had been excited that it was finally TUESDAY (the day the tubes come out) changed his mind and decided this was a terrible plan  He cried almost all the way back to the hospital. "You have to turn this car around mom!  Go back tot he Children's Museum!"  I reminded him about how exciting it would be to throw his tubes in the trash.  But all reason went out the window.  Maybe this was a bad plan.

Got there early and when they paged Dr. Kaeffer they told me it would probably only be 30 minutes!  "Awesome," I thought, "maybe we'll get back to the museum sooner than I thought."  After 30 minutes they took us back to a room and the nurse said "5 more minutes." Owen played iPad and I got out his new underware and wrote out my list of questions. 

25 minutes later, I venture out and ask what's going on.  30 minutes later Dr. Kaeffer comes in!  Grr.

I tell him the MACE catheter had come out 2 times Sunday (yes, 2) and that I had gotten it back in fine.  

He told me he wanted me to practice in the office putting both the MACE and Monti catheters in and out. Then he drops this bombshell....

The SP tube will stay in another week while we make sure there are no problems cathing the channels!  

WHAT!!!????!!!!!  

I couldn't help it.  I started to cry.  [this is where you "hear" the mama bear in me vent. I apologize.]

Dude,  I'm all on board with this conservative approach thing.  Really another week is not the issue.  If that's what is best for Owen, I'm on board.  I was actually kinda nervous going home cathing the Monti with no other access.....  BUT..... why is this the first time I've heard this?!!!!  7 weeks!    I had prepared Owen for today assuming we were getting all the tubes out, cause that's what you told me last time!!!

If anything in this process, this kid needs to trust what I'm telling him to be true!  It is confusing and painful enough!   

The SP tube is the one that hurts Owen the most.  He wants it out.  I want it out. One more week.... WHAT!!!!!!????!!!

I was MAD.  

I mean, I am the most compliant parent ever... tell me this is what needs to happen and I'm on board.  It's not really the extra week that's the issue for me (though it sucks), it's the fact that nobody saw it relevant to mention it at any point along the way.  It's all about expectations. Every step had been layed out... except this one.

You'd think maybe somebody would say, "We like to leave the SP tube in an extra week when you have a bladder neck repair, just to make sure we have access to the bladder if cathing the channel doesn't go well."   

You'd think.

It makes sense after all.  And really, I'm kind of glad about it actually.

And all I get is "I'm sorry if that wasn't clear."  

Um, ya think?!  Seeing as how this is the first I heard it!?  Ya think!

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I managed to stifle my crying and do the things Dr. Kaeffer asked.  Cathing the Monti stoma is weird, but not hard. Owen did not like it, but I think that was more preliminary freaking out and fear of it hurting than it was pain.  I am hopeful this will get easier.

Dr. Kaeffer gets paged by the OR and steps out.  I can't hold it in and bawl some more.  Put the new Cars underware back in the bag.  I know Owen won't want to wear it until his tubes are all out. 

I realize that Owen is actually relieved the SP is not coming out.  Since the museum drama that morning he had changed his mind about everything and said he didn't want the tubes out.  He was scared it would hurt.  

He's okay with this.  why aren't I?   

He had a nurse come in and finish the teaching.  Which made me wonder why I had to wait for Dr. Kaeffer in the first place!  (if a nurse could have done the whole thing.)  grr.

Of course it's a nurse I've never met and I'm blubbering  ridiculously.  can't stop.  Nice first impression.  "I really don't normally freak out about things like this, really."  She was very sympathetic.  We got through everything and headed out.  

Ug, what a morning.

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I was mad at myself for crying—for being so upset about a little change in plans.  Why do I react like that? I know it's been a long, trying road these last 6 weeks, but still.  In the big scheme of things it's not a big deal.

I think one of the hardest things I've found in this journey with Owen—and I mean all along—is having to completely change gears on a moments notice.  It happens more than you think.

ultrasound - supposed to be routine.... they find something.

shunt surgery on a Thursday, shunt is working - wait he needs another revision the next day.

surgery is in March - just kidding... July.

just to name a few.

What's interesting is I seem to find it easier to change gears with the big things than I do with the small things.  Why is that?  Seems I acknowledge the big things are out of my control more readily than I relinquish the idea that I don't have control over the little things.  I seem to hang on to that notion.  ridiculous.

As I drove us back to the museum to meet up with Eric and the kids I reminded myself to hold life with palms wide open.  Not trying to keep one finger down, holding things where I'd like to see them.  I need to remember to trust God fully. with everything. every little thing.  After all, He's got us firmly in his grip.  He's in control.  I need not worry.

So one more week it is.

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The plan

- cath through the Monti every 2 hours for 24 hours with SP capped.

- then every 3 hours during the day.

- drain to SP bag at night.

- until 3 days before next appointment

- then cath every 4 hours at night

- MACE flush once a day 

- and insert catheter into channel (to keep open) once a day

Good times.  Starting that today!  pray for us.  :)

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Owen is having a hard time keeping bandaids on his MACE stoma.  Likes to itch it.  It's still so large and protruding it needs covered.  I don't like it one bit.  Trusting this approach is best.  In 9-12 months we can do something about it.  I'll try to post photos later.

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Okay, that's it.  Whew!  If you read all this, I am amazed.  But I sure feel better.  and hopefully, if this happens to you (SB moms) you won't be as sideswiped as I was.  Though it seems Dr. Kaeffer kind of does this whole thing differently than EVERYONE else in the world.  almost "annoyingly conservative," if there is such a thing!  :)