Wednesday, February 29, 2012

Pacemaker

Harlie's pacemaker surgery is scheduled for Tuesday, March 13th.  At first we were going to have it done here at MCV.  But, I just felt this... feeling in the pit of my stomach.  It's not that I don't like MCV, because I do.  I truly believe it is the BEST hospital here in Richmond for kids.  Period.

But, she's had all of her heart surgeries in DC.  And they have a CICU (cardiac intensive care unit).  And when I thought about deviating from the "norm", I felt like I was holding my breath.  And if we go to DC, that's that, and it's normal and all of a sudden, I don't feel like I'm holding my breath anymore.  I just don't want to have to think about it.  I have enough I'm thinking about already.

Odds are, it will be a relatively simple surgery.  She already has the pacemaker leads installed in/on her heart, so it should be easy to hook up the battery device to the wires.  If they go to hook it up (don't you love my technical terms?) and it doesn't work, then they have to do a lower sternotomy and reattach the leads to her heart.  But, of course, they won't know till they get in there.

I don't know... you'd think by now (this will be her 21st surgery, I believe) we'd be all old hat and all.  But, honestly, some if it scares me more now than it did before.  If I'm being truthful - I'm terrified that the second we become complacent with her having surgery, especially if it is a "minor" one in comparison, something horrible will happen.

And as Tom and I sat down to look at our calendars, he doesn't think he can make it to DC for this surgery.  He's really busy at work right now (thank God for that!) and he doesn't think he can get away.  And I distinctly remember a time when Harlie was having a simple OUT PATIENT procedure and she almost died.  He wasn't there.  What if?  How would I have called him and told him that over the phone?  

I know I shouldn't do this - but I can't help but think of the average set of parents and think that both the mom and the dad would be at this kind of surgery for their kid.   But, Harlie's just had so many.  It's simply not possible for Tom to take that kind of time off from work.  And everything about that makes me sad.  I can't believe how much she's been through.  And we're not even close to being done.

Not even close.

When are we going to get to a place in her life that she can just live her life?  Between all her hospitalizations, surgeries, therapies, doctor's appointments, etc. how is she still cooperating at all?

Quite frankly, I'm tired.  I AM TIRED!  I helped sort like a GAZILLION Girl Scout cookies today in a cold warehouse with wet shoes.  It rained all day today and my tennis shoes got wet on the way in and that has to be one of the most annoying feelings in the world - to have cold, wet feet.  Ew.  Then I had to run to school to relieve Harlie's nurse who leaves at 12:30.  Then I went to my friend Lynda's house to switch cars (too long of a story).  Then I came home to find Murphy home (when he was supposed to be at school with his running club).  So, I rushed him back to school for that (but not before I changed my wet shoes and socks, which instantly made me happier).  Then I had to put the seats back in the van (had to make room for cookies).  Then I took the kids to go and pick up Murphy.  Then I came home and returned the call from DC Children's and scheduled Harlie's pacemaker surgery.  I haven't run or done any exercise since the 10 miles I ran on Sunday, and I'm supposed to run 12 this Sunday and I didn't even want to walk to Murphy's school today!

And if I'm so tired, what about HER?  She's only five.  I bet she's pretty tired, too.

I don't want to take her to Therapy Thursday tomorrow.  And she has another follow-up appointment with her ortho surgeon next week about her spinal fusion.  In Northern VA, of course.  And you know what?  I'm not taking her.  I'm rescheduling it.  Sorry, Doc, but her spinal issues are no longer at the top of our priority list.  Sorry, but we have to move on.  And how much school can this girl miss?  Geez.

Oh!  I want to tell you about yesterday!  Yesterday morning Cooper woke up bright and early at 5:30am like usual (I truly DO live in paradise!) and was in his normal good, energetic yet cuddly mood.  And then he threw up in our bed.  On Tom's side, of course.  hehe  Of course he wasn't there because he goes to the gym at 5am.  Lucky ass.

Then I have all the kids downstairs and sitting at the kitchen table.  Cooper asks for cereal.  Then proceeds to throw up all over the kitchen table and in his bowl of dry frosted mini wheats.  And you know what he said afterwards?  "Mommy, will you dry my cereal?"  "Mommy, I want dry cereal."  Sure, honey.  Would you mind if I cleaned up the barf on the kitchen table first?  And I'm not going to dry your cereal, I'm just going to get you a whole new bowl of cereal, okay?  And so much for my Adrenaline class that morning.

Rush, rush, rush everyone out the door.  Tom and Murphy walk to school, me, Terri, Harlie and Cooper get in the car.  I grab a bowl, just in case Cooper gets sick again.  I leave a perfectly fine school located approximately 2 minutes from my home to drive to a different school 10 minutes away.  I think I may be getting a wee bit bitter about that.  We got to school, dropped off Terri and Harlie and then I head back home.  Just as soon as I got on the interstate, Cooper threw up all over himself.  I tried to give him the bowl, but he just didn't get it.  He threw the bowl to the side and continued to throw up everywhere.  Then, through tears he said, "Mommy, I need a wipe."  I tried so hard not to laugh.  A WIPE?  Oh, honey, you need more than A wipe, you need a hose.

Got home and ran inside to get some gloves.  Got him out of his car seat and stripped him of his yucky clothes and threw them, along with his car seat cover, in the wash.  Despite him clearly feeling crappy, he continued to run and jump and play as if nothing was amiss.  Really?  I'm sorry, but if you're going to yak, you should have to stay in one place.  Simple rules, Buddy.

He threw up another two times after we got home.  But I caught it with the bowl.  Even though he kept on trying to push the bowl away.  I still caught it.  Success!

Then he asked for frosted mini wheats again.  He ate two bowls, drank some Propel and has been fine ever since.  Thankfully.  He is a funny little dude.  And some good news to report - he's starting to go pee pee on the potty!  Woohoo!!!

Okay, I feel better now.

Thanks for listening!
~Christy

7 comments:

Tanya said...

Do you sometimes wish there were 2, maybe 3, of you? You are an amazing mom. Your feelings about the surgery? They apply to everything! You are taking so much in stride that woukd overwhelm a typical family.

Grandma said...

Oh Christy, in spite of all you went thru in one day's time...I can not help but laugh...you have such a skill! Harlie will be fine..she will be in very good hands in DC and even though I know you guys are afraid...Our Good Lord will be holding her and hshe will be fine...Yea, for the potty for Cooper and I sure glad to hear the little guy feels better. After spending the weekend there..you have no idea how much I miss those little kids...amongst all the hard work they are the sweetest angels ever!

Suzanne Upton said...

You make me tired and you make me laugh. Puke catcher, cookie sorter, soooper mom. Lucky kids you have!

Here's hoping the March 13th hook-up is simple. Easy. No issues.

Sandy said...

You make me laugh! I can't wait to read your book!!

Susan said...

(((((HUGS))))) I can imagine all the feelings about the surgery. You're making good decisions and handling it all really well. It's not easy what you're juggling, especially when there is that much barf!

Anonymous said...

I just feel like with everything you deal with on a regular basis...God should cut you a break on the puke. LOL. I mean, really?? It's like, if you have to do everything you do with Harlie...can't he let you have other kids not barfing? Bless your heart! XOXO

Love,
Liz

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