Thursday, March 31, 2011

Post-Op Day 3 - PM Update

I am sorry to report that there's been no progress so far.  Total bummer.  Her belly was actually looking a little better earlier today, but this afternoon it is WAY worse.  I don't see how in the world she could last much longer without compromising something.  I mean, something's gotta give!

So I wigged out a bit.  I just couldn't take it any longer.  She is signing "milk" which she has NEVER done (asking for nutrition of any kind) before.  So, she MUST be HUNGRY.  Which is kinda hard to understand when you see how she looks.  But, I'm only giving her apple juice or water.  I gotta tell you - I would have given my right arm to have that child ask for nutrition!  So, to have to tell her no KILLS me.  Like you wouldn't believe.

After having to tell her no a few times, and wanting to explode, I went to find my social worker.  I had to vent.  My problem is that we are in the cardiac intensive care unit.  She isn't critical.  Well, she might be if she doesn't poop soon.  But, as far as their care goes - she's not ranking very high.  Which I totally get.  But, I'm less than impressed with today's nurse.  Especially for the CICU.  We've hardly seen her at all.  And, quite frankly, I don't know that I want her doing much anyway, if you get my drift.

So, between the docs having more important patients to take care of, and a nurse that's awol, I just feel that it is totally up to me to watch for danger signs or get anything accomplished.  And that wigs me out.

Luckily most medical professionals are able to care about your problem, even when they've got tons of other problems of varying degrees on their mind.  That always blows my mind.  So, my social worker helped me out and got them to order some more help for Harlie.

They gave her a glycerin suppository last night, which produced nothing.  This afternoon I asked them to give her another one.  Again, nothing.  So, they have ordered an enema, but it hasn't gotten here yet.  This is what I was referring to in yesterday's post - things take a lot of time in a hospital.  The docs had to put a order in, the pharmacy has to pull it off some shelf somewhere (it's not like they have to make the stuff!) and then it gets brought up (apparently from China, because it's STILL not here!) then the nurse has to get it and then bring it in and give it.  I don't know where the current breakdown is in that chain of events, but it leaves us no closer to relieving her discomfort.

I could have driven to CVS and gotten one and just given it myself by now.

We are supposed to move to the floor (heart and kidney unit - HKU) as soon as a bed is available.  But there are several kids on the waiting list to be moved there, too.  So, I'm thinking we're staying here for a little while.

I wish I had better news, but hopefully my next post will be MUCH better!

Thanks,
Christy

Post-Op Day 3 - AM Update

Thank you for all your comments and messages yesterday.  I really needed them.  When we left the hospital last night, we left with heavy hearts.  I was just so sick about not being able to bring her comfort when you can so clearly see how miserable she feels.  And I was worried how she was going to do through the night.

I called her night nurse three times total - and that is so not like me.  But, she made it through the night without them having to cut the cast and with no breathing distress.  Whew!

Late yesterday we came to a revelation - her expanding middle is probably not due to her overall swelling.  It is most likely her abdomen that is swollen, and since it can't expand outward (because of the cast) it went the only way it could - up into her chest area.  Ouch!

Remember how I fed her 5 ounces of Pediasure yesterday?  Well, that was between 12:00 and 1:00pm.  She didn't get anything else by mouth after that.  Well, at about 6pm, her nurse went to give her some meds through her g-tube.  When she hooked up the tubing, milk came up from her belly.  What?  She got that like 5 or 6 hours ago!  So, she checked her residuals (what was in her belly - by pulling back on a large syringe).  She removed 150mls of Pediasure!  Remember that I fed her 5 ounces?  Well, 150mls equals 5 ounces.  It was still just as white as when it went in.  No breakdown whatsoever.

Oh, how uncomfortable!  Nothing is moving.  And that food just sat there for 5-6 hours!  Ugh!  So, we gave her Miralax.  That's something she's on daily at home.  I've asked for them to give her Miralax several times.  They kept giving me reasons why she shouldn't have it.  I don't know that it would have made a difference.  But, still.  It's so hard to know what's right - do I push what I want (or what makes me feel better) or do I trust the docs?

She was under anesthesia for a long time - from 8:30am till about 4pm.  And that makes it hard for the bowels to wake up and start working right again.  Then, she got tons of pain meds, which slows down the GI system, too.  So, she's probably full of air and nothing is working to get it out of there.  Ugh!

Last night they gave her a glycerin suppository - but nothing happened.  I do think that this morning, she looks a little better.  But, she's sleeping and it could be the position that she's in that makes it look different.  I don't know.

Since she's potty trained, we got a bedpan to have handy.  Hopefully she'll tell us when she has to go potty.  If not, I can already see that we are going to have major struggles trying to keep her cast clean.  If they had cast her leg at a slight angle, it would have been a little better.  But, her right leg is cast straight down and the cast comes so close to her butt.  I don't see how in the world she can go in her diaper and it not get on the cast.  They did the best they could wrapping her cast with something to try to help.  But, I really think the only answer is to get her on the potty somehow.  But she's reclined.  I don't know...

What I can tell you is that the next few weeks (finishing out this hospital stay, getting her home, getting settled into some routine) etc. are going to be HARD.  And it feels pretty overwhelming to tell you the truth.  I guess I have to go back to our old way of thinking.  Back when she was a baby.  One day at a time.

So, the positives so far today are:

  1. She's still on trach collar and they did not have to put her back on CPAP (which means continuous positive air pressure, by the way).
  2. We found the cause of the "swelling" and that giving her all the diuretics in the world aren't going to help.  In fact, they would probably make it worse by dehydrating her.  They are still watching her numbers closely, so I don't think that would have happened.  And she was still swollen everywhere.  She definitely looks better today as far as that goes.
  3. She's on Miralax now and her cast is wrapped as well as it can be for now.  I'm thinking some saran wrap or something might have to be tried.  Hopefully things will start moving and she will find relief and comfort.  
  4. She's had several hours at a time of what appears to be good rest through the night.  So, hopefully she'll feel more well-rested today.  

So, hopefully today will bring more positive changes.  For the boys, too!  Murphy was sick yesterday - maybe some stomach bug, since he was throwing up?  And even though he felt better last night, he's already gotten sick this morning.  So, no school for him yesterday or today.  And Cooper didn't have preschool today because it is teacher/parent conferences.  Poor Grandma!  I always wish that things go the best they can so she'll want to come back and help us in the future.  And I hate that Murphy is sick and wants us and we can't be there!  So, please send some good wishes their way, too.

Which reminds me.... Saturday night we were headed out the door to my brother's house for dinner when Murphy said he was feeling sick. We were asking him questions trying to understand what was wrong.

Me:  Murphy, when did you start to feel sick?
Murphy:  When I felt nauseous (looking at me like, DUH!).

Well, they haven't rounded on her yet, so I'll try to update you after that.  Thanks again for all your support.  We've needed it and appreciated it more than you'll ever know!

Much love,
~Christy

Wednesday, March 30, 2011

Post-Op Day 2 - 2nd Update

Well, she's still on trach collar (not CPAP), so that's good.  But she's still on oxygen and when the collar goes awry and she's not getting as much, her sats drop.

Her swelling hasn't improved.  And I am bummed to say that I think it has gotten worse.  And that's not me freaking out, either, the nurse practitioner agrees.  Her ortho surgeon came by and said it was really tight.  She said they can split it down the middle a little to give her a little room.  But, once the diuretics start working, it will be too loose.  She would like to give her till tomorrow to see if she can lose some of this fluid.  She said she would let the ortho resident know that they might have to split the cast tonight if her breathing begins to be compromised.  I really hope that doesn't happen.  For many reasons.

The doc that's going to be in the CICU tonight just came by to have a look so he can have a baseline to compare to for the rest of the night.  I know she's in a hospital and that she's hooked up to monitors and that they will be watching her closely and that if she shows signs of distress they will just have to cut the cast - however - I will be a nervous mom going to sleep tonight.

I would feel better if the cast saw were bedside.  And the guy in charge of operating it were sitting right outside her door. I know plenty well enough how fast things move in a hospital.  And it is NOTHING like in any of the hospital TV or movie dramas.  Trust me.  By the time this person calls that person and that person pages another person and that person gets out of bed - she would be one miserable little girl.  Ugh.

They just administered her first dose of Oxycodone.  Hopefully that will help her feel more comfortable.

She keeps on communicating that she wants "up" and I think she means that she wants to sit up.  Then she signs that she wants to sit in the chair.  We put her in the chair, then she signs that she wants to be in the bed.  I think she's looking for a place that's more comfortable, but she's not finding it.  I put her in my lap while I sat in the chair and I propped her up so she's more upright.  But, she still signed that she wanted to be back in bed.  She reaches her arms up to me and stretches her little fingers out trying to reach me, wanting me to pick her up.  I lean down and hug her and she tries to pull herself up.  We've been through this before.  It appears that she wants a hug, but what she wants is for me to pick her up and then take her out of here.

She's breaking my heart.  Hopefully tomorrow will bring her more understanding about all of this.

Yep.  Different location, same position.  Sorry, Babe!!!
She did make some movement progress today.  We got her up and standing.




She wasn't able to support all her weight, we had to help hold her casted side quite a bit.  But PT brought a walker and she did understand to hold onto it.  She "stood" for about two minutes and then signed "all done" and they were happy with that.  Every little bit helps.

She also ate another 5-6 ounces of Pediasure today - very willingly, I might add.  Oh, what a great feeling!  I let her hold the medicine cup as much as possible.  I'm trying to give her as much control as I can.  It hurt me to watch her - she was shaking so badly!  But she was determined to do it herself, so I let her.  She really is so incredibly tough.  In so many ways.  Boy, are we thankful for that!

And earlier in the day we brought in the VECTA distraction machine.  We've used it before and it has really helped calm her down.


And they took out her arterial line.  That was NOT pretty, and I had to look away.  I was tempted to take some photos, because I'm demented like that (that's for you, Allie!).  But sometimes I want to share some of the horrible stuff I have to deal with - it makes me feel like I'm not so alone in all the yuckiness.  But, then I thought I could lose some readers.  Feel free to thank me by leaving a comment.

So, here's a photo after it stopped bleeding and was covered up.  But, I think you can tell how ugly it is underneath there.  And look at those puffy fingers!


And again, this has taken me forever to write.  There are so many interruptions in a hospital room!  So, that's it for today, I think.  Hopefully the diuretics will turn things around fluid-wise and she will get some relief without having to change the cast.

Thanks for all your support.  I love reading comments, so please say what you want - no need to be shy.  I'll update again as soon as I can in the morning to let you know how she did tonight.

Thanks!
~Christy

Post-Op Day 2 - 1st Update

Well, a lot has happened since yesterday.  I'll try to make this as concise as possible.

Yesterday they pulled the central line in her neck.  We got her all cleaned up and changed her trach ties.  She still has an arterial line in her right wrist. She wants that gone.

We also got her in a chair.  Which is kinda funny, because she stays in the same position regardless.  So, I don't really see the point.  It takes an insane amount of work to get that accomplished because of all the lines.  But, she sat there for a while.  She kept on communicating that she wants to sit up - but of course, she can't.  We will have to work on getting her in a more upright position today.  I just don't think that can be accomplished in the hospital chairs.

While she was in the chair, we offered her some Pediasure in a small medicine cup.  And the most amazing thing happened.  She wanted it!  She drank it and asked for more.  And then she wanted to hold the cup herself.  I can't begin to explain how excited I was about this.  This is truly monumental.  I don't know that she's ever realized what hunger is or that it can be satisfied by eating orally.  If we could make that happen, I really think everything about feeding her would change forever.  Once she realizes the benefits of eating and drinking - well, Hallelujah!  Since we were hoping for this (since she hasn't had anything to eat or drink since Sunday) we put in her orders that she is an oral eater - so no tube feedings.  How exciting!!!!  I seriously was BURSTING with excitement and wanted to go running around shouting from the rooftops. All total, she probably drank about four ounces before falling asleep.

As if that wasn't exciting enough - Tom and I were leaving the room to go grab something quick to eat (she appeared to be sleeping) and I told her bye and that we would be right back.  She opened her eyes and and then waved bye.  Since she volunteered that communication, I signed and said "I love you" and you won't believe this... but she signed "I love you" back.  SHE SIGNED "I LOVE YOU" BACK.  And she blew us a kiss.  We were on CLOUD 9.  To put this HUGE event in perspective - it took a month for her to be nice to us after her last heart surgery in July.  A month!  And on Post-Op Day 1 - she signed I love you.  I couldn't be happier!!!

When we left her for the night all was well.  And we were happy.

At 10:30pm, we called to check on her and they had put her on CPAP (which helps you breathe).  They said her sats were getting into the mid-70s (she's in the 80's, baseline).  The problem is that she is in pain.  Coughing hurts her.  So, to avoid coughing, she is taking shallow breaths.  This doesn't inflate your lungs fully.  So, all those little oxygen producing parts get full of gunk.  Being on CPAP will help inflate her lungs.  Walking and sitting up helps, too, but those aren't options right now.

So, that was a real downer.  In typical special needs fashion - you crash from high to low pretty hard.  That part sucks.  Emotionally, that's exhausting.

So, they just rounded on her and after spending all night on CPAP they are going to let her try going back to just the trach collar.  Hopefully the night on it helped enough to get her over the hump.  But, if memory serves, this happened several times in July after her heart surgery.  Being on CPAP overnight just bought her another 24 hours in the CICU.  They want her off CPAP for at least 24 hours before going to the floor.  As of right now her sats are good, so our fingers are crossed.

This morning she was SO miserable.  The worst I've seen her thus far.  And it is so hard to watch her like that.  I can't help her and it kills me!  She is itchy (from the Morphine) and she was super agitated with the CPAP (she doesn't like the help with breathing) and she is way over the arterial line in her right wrist.  They gave her Benadryl and Valium and she calmed down a bit.  And they are taking her off Morphine and are going to put her on something else - Oxycodone or something.

I also think she is even more swollen today than yesterday.  The area around that cut out in the cast is pressing up against the cast.  It looks painful and she keeps trying to get her fingers in there.  Hopefully her ortho surgeon will come soon and let us know if that's normal or safe or something.  It looks horrible to me.  They are trying to get that fluid off her, but it isn't easy.  They are giving her another diuretic (either in addition to, or as a replacement for Lasix) but I can't remember what it's called.

They also put some compression things on her right leg (since it doesn't have a line in it).  I'm sure it's just another thing that's annoying her.

As usual, it has taken more FOREVER to write this.  It is now almost 11am and she is even MORE swollen than just one hour ago.  I am getting really worried.  Her middle is bulging through the opening in her cast.  Her face is way worse.  My heart just aches for her!!!

Tuesday afternoon.  So cute.  In a miserable sort of way.

Getting her all cleaned up on Tuesday.
I think it's funny how you feel compelled to smile in all photos.
Even when torturing your child.  Say Cheese!!!

Drinking Pediasure!  Go Harlie Girl!!!
You make us so proud!

Getting her in the chair.  Looks easy enough.

You might be able to see her right eye and how it looks a little bruised.
The swelling is worse as I type this.

This was first thing this morning (post-op day 2).
She was grabbing and swatting at everything.  

We still haven't seen her ortho surgeon.  I am really hoping she comes by soon.  Please keep your fingers crossed that she can get rid of that excess fluid soon.  She just coughed while on the trach collar and she didn't make a sound.  Complete silence.  Which tells us that even her airway is swollen completely around the trach.  That terrifies me.  

Thanks,
Christy

Post-Op Day 1 - 2nd Update

I wrote the following yesterday (Tuesday) but never was able to finish it.  I'll provide a new update as soon as I can...

Guess what?  She lost ANOTHER tooth!!!  Her nurse was getting her all cleaned up - trach and mouth - and used a sponge thing attached to a suction.  She brushed her teeth with the spongy thing and when she pulled it out I saw something white on it.  A tooth.  Another bottom tooth that must have been knocked loose yesterday.  Grrrrr.....  Her nurse looked at me so sympathetically and said she was sorry.  But it was not her fault.  And, quite frankly, I'm glad she got it out instead of it staying in there loose and Harlie swallowing it or aspirating it.  Wouldn't that be something?  Talk about adding insult to injury!!!

So, that's three teeth this stay so far, and one tooth from last year.  Four of her baby teeth lost due to trauma.  Nice.  You can bet your butt I'll be looking into a mouth guard for her.  

That just proves that no matter what - when you have a medically complex kid - you never know what's going to happen.  And that's why every stay is stressful and scary.  Not that loosing teeth is life-threatening or anything, but I never, in a million years, would have thought that would have happened during this surgery.  

Anyway, her two IVs stopped working today.  So, they had to get another IV in before they could take out the central line in her neck.  She hates all the stuff wrapped around her hands and arms.  And that makes it so difficult for her to sign.  So, I asked them to try to get it in her feet.  They didn't want to do that just in case they want her to stand at some point in the next few days.  So, they got one in her shin/calf area, on the inside of her left lower leg.  

They won't pull her arterial line (in her right wrist) until her blood work comes back normal.  Which I hope happens soon because she HATES it and wants it off as soon as possible.

That's all I got written yesterday - so now I'll try to update you on what's happened since then.  And it's a lot.

Thanks,
Christy

Tuesday, March 29, 2011

Post Op Day 1 - 1st Update

Without further ado...

Ta-Da!  Here she is in the body cast.  It's PINK!  


Didn't they do a fabulous job with her baby?  How caring of them!!!

What?  You dont' have family photos like this?  Sorry about your luck.




She's pretty swollen.  And this morning, she appears to be bruising a little on the right side of her face.


They rounded this morning.  She will remain in the CICU for at least 24 hours.  I get the impression that the cardiac docs and ortho docs haven't completely agreed on where she'll go after that.  I'm pretty sure the cardiac docs will win that one.  I didn't realize that the heart and kidney unit (HKU) have different monitors that show more stuff (cardiac stuff) than the ortho floor.  Makes sense.  So, that's why I think the cardiac docs will win.  I don't see how anyone could argue with that.

Physical therapy stopped by this morning.  Apparently they want to get her "up" today.  Yeah, right.  I, of course, sent the PT away for now.  She's finally sleeping *comfortably* now.  The night nurse said that she had an "okay" night.  I know she has to be super tired.  And she has made it perfectly clear that she does NOT want to be touched in any way.  She doesn't care that you want to feel her pulse.  Or that you want to check her capillary refill.

I can tell you this - she needs to be cleaned.  Her trach and neck look awful.  Disgusting.  And her mouth is still so bloody.  I can't help but think that if she were more clean that she would be more comfortable.  So, when she wakes, I'll see if we can get her cleaned up a bit.

They are struggling with her fluid.  I think that all the blood loss caused a chain reaction that they haven't caught up on yet.  Everything is a balancing act, you know.

Oh, just got word that the cardiac surgeons are sending her to the HKU for sure.  Apparently what they say (meaning Dr. Jonas, her surgeon) goes - and so it will be.  I love that they are protective of their heart patients.  So, the ortho people will brief the HKU nurses on that stuff.  And we will go there tomorrow if all is well.

And another thing, last night when we got into her room for the first time, they had her arms restrained.  She did not like that.  At all.  So, I asked if we could untie the restraints.  I really think that giving her some movement will make her feel better.  She still has an arterial line in her wrist, so they were just worried that she would pull it out (that could be very dangerous) since she was so feisty.  As soon as she was untied, she brought her hands together and signed "off".  Oh, my poor sweet girl.  Then she pushed down on her body cast.  And so it begins.  I really don't think it will take her long to get that she can't take it off.  I know she'll get used to it.

After she got settled and went to sleep, Tom and I left and went to dinner.  We went to this place called Lebannese Tavern.  It is so good.  The restaurants here are so yummy.  We had a fabulous dinner (fried artichoke hearts with a butter lemon sauce, roasted garlic hummus, and whole sea bass with cous cous and grilled vegetables with a garlic, lemon and parsley sauce that was SO freaking good I could have eaten it alone).  And the most important ingredient for dinner - WINE.  Yum.

PT is here again.  Gotta go.  More later.

Thanks,
Christy

Waiting...

More Pictures...

Waiting to be called back...

I'm just going to sink into my iPod Touch and completely ignore you.

I can't believe you brought me back here.  And I thought you loved me!

My brave girl.
Break. My. Heart.

Ahhh.... Versed.  Makes everything better.
Take care of my sweet girl, okay?

You get warm fuzzies in your heart when you're the last ones in the waiting room.
Chirp.  Chirp.  Hello?  Is anyone there?  
More still to come!
~Christy

Arriving in DC RMH

Pictures!

Here's us getting settled in at the new Ronald McDonald House (RMH).  Tom put all our stuff on this dolly and then we headed to Target.  On our way out Harlie grabbed her backpack and communication device.  So cute.  And as we were returning the dolly, she put her backpack on it.  






Bedtime story... Bear goes to the Hospital (or something like that).  Bear crashed his bike and broke his leg.  He got a cast and went home.  She signed doctor, nurse and better.


As of right now, I don't think the story helped prepare her.  She's a little pissed.  But, she'll get better.  The problem with all the books about casts is that the patient crashes and breaks something.  So there was a cause with pain, and the cast makes it better.  But, in her case, she lived just fine and BAM! she comes to the hospital and is put in pain.  Maybe I should write that kind of book.

More pictures in a bit...
~Christy

Monday, March 28, 2011

Recovery Update #1

Okay, just want to let you know that I am no longer pissed.  Sorry for that outburst in my last post.  As it turns out the two teeth she lost are on the bottom.  Whew!  I know it sounds completely ridiculous that I would stress so much and get so upset over baby teeth.  But here's why...

1.  It's always the little things that push me over the edge (momentarily anyway).  I always recover.  So far, anyway.  Perhaps it provides a distraction from the much larger, much more important issues that are hanging above like big scary, black clouds.  Any shrinks read my blog?  I could probably use some analyzing.

2.  Quite frankly, she's already got more than her fair share of facial and dental issues.  The last thing she needs is more issues with her mouth and teeth to distract from her beautifulness.

3.  Do we have to fear losing teeth for all future procedures?  Geez.  And what will we do when they are her permanent teeth?  I'm going to have to find an orthodontist to make her a mouth guard for crying out loud.

4.  And the way she lost these particular two teeth (just in case you didn't know - she lost a front tooth last February after her jaw was wired shut for 9 weeks) just make me cringe.  Seriously.  Shudder!

So, she appears to be somewhat comfortable.  Although I highly doubt that she would agree.  She's already tried to twist all around, which has GOT to hurt.  She's a bit swollen - around her face especially.  But that's probably normal given the trauma, fluids and blood lost and received.

The body cast is SUPER cute - as far as casts go.  And her baby doll has an exact match of a cast.  The pair could NOT be cuter!!!  (If I do say so myself.)

Oh, and before I forget, the surgeon told us that after the cast comes off that she will put her in a brace for a few months.  Fabulous.  During the summer.  That should be fun.

Okay, just wanted to let you know that I've calmed down and have returned to my normal, fun-loving, funny self (if I do say so myself).  So no worries.  All is good in the CICU (cardiac intensive care unit) so far.  Well, again, I doubt Harlie would agree.  She's looking pretty miserable right about now.  Break. My. Heart.

Thanks,
Christy

All done

Okay, they are finally all done.  The surgeon came out and told us that she did great.  She lost a lot of blood, but that wasn't surprising.  She said that she could tell that if she didn't do the fusion on the kyphotic part (upper area) that it would be way worse.  So, leaving it untouched wasn't really an option.

I am trying to remain calm, but as I write this I am struggling with my feelings.

The GOOD news is that everything is moving the way it should - her arms and legs - so it appears that she's okay as far as spinal damage goes.  Before I go on - I want you to know that I realize that this, along with the fact that her heart did fine - is ultimately what's important.  And I am thankful.  Always so very, very thankful.

However, SHE LOST TWO MORE EFFING TEETH (sorry for my language) AND I'M PISSED!!!!  PISSED!!!!

It's moments like this that I find myself thinking those horrible words I try SO hard not to think - it's just not fair.

Dammit!  The worst part is the theory as to how they were lost.

Apparently (not that I had ANY idea of this beforehand) in order to test neurological function to see if any spinal damage was done, they put leads on her head and stimulate some sort of jolt in her body.  This jolt (does it sound barbaric to anyone else, or is it just me?) makes the patient clench their mouth, their teeth???  Anyway, they put gauze in their mouth to try to protect the tongue (they have had patients bite through endotracheal (intubation) tubes before) so they know how powerful this jolt is and the damage it can cause.  They give this jolt like 25 freaking times or something to measure what happens throughout the body.  They think that she kept on clenching so much that they just came out.  I really don't know how else to say that.  She bit her own teeth out of her mouth.  Oh. My. God.

I can't even write about it anymore right now.

Oh, and the ortho anesthesiologist said that she has about 1,100 ccs of blood volume and she LOST 800 ccs.  So they pretty much completely transfused her.  They expected a high blood loss - but that amount surprised them.

She's alive.  She's moving.  He said that she's let them know how she feels about them (you go girl!).

Gotta go and see her now.

Surgery Update - 3pm

A nurse just came out to tell us that the surgeon did BOTH fusions.  She said that she (the surgeon) would be out soon to talk to us about how things went.  Tom asked her if Harlie did okay for them and she said, "She's stable."  Hmmmm... not sure how to take that.  English is not her first language, so I'm hoping it's just a cultural thing and not a the doctor has to tell you that something very serious happened in the OR kind of thing.

The nurse said that they still had to cast her - so it would still be "a while" before we see her surgeon.  While I'm anxious to see her - I don't want to see her!  I'm dreading what she's going to look like in this cast.  And that sounds so stupid after having to see her after two jaw reconstructions.  Those were the WORST.

And that reminds me - I haven't really talked about Murphy and how he's doing with this surgery.  We talked to him a week or so ago about it.  He asked if she would come home looking like Frankenstein.  Oh, my poor kids.  All of them.  I really hope they develop good coping mechanisms and don't try/like drugs.  I've seen my fair share of A&E's Intervention.  They all had something traumatic happen to them when they were kids.  Well, most of them anyway.

Murphy did his best to ignore me as much as humanly possible for the entire day.  I had to resort to sending him next door.  Thanks, Cami!  Then Cooper was a whiny mess.  He could clearly see that something was amiss as our mass of baggage grew in the hallway.  Murphy was eating dinner and Cooper ran up to him and threw his arms around him and said, "hug."  Oh, a moment to treasure!!!!

Okay, back to right now.  They have the TVs on in the waiting room and we are watching some horrid soap opera.  There is a very inappropriate scene of romantic nature on right now.  EW!  Isn't this a children's hospital????  Tom can't stand it and keeps making funny comments.  He just said, "and now he's going to fumble with her bra."  Yes, it's that kind of scene.  Hey fellow stranger parent sitting next to me in the waiting room, good TV viewing, huh?  Oh, I'm sorry, that's you snoring.  Sorry, didn't mean to wake you.

Oh, the joys of having a complex child and spending a mass amount of time in uncomfortable situations. Good times!

Anyway - got off track a bit there - the waiting isn't really the worst part.  It's all the days in the hospital afterwards that are hard.

Okay, I'll update again when I know more.
~Christy

ENT Update

So, they took her back at 8:39am.  We got here at 6:45am.  First thing this morning, we had a flat tire!  Of all the luck!  There is a big screw in the right front tire.  Let me just say that we did NOT need the added stress.  So, we limped to the hospital and Tom will take care of it when the spinal fusion is underway (since that will take several hours).

She got mad when she saw the hospital bracelet.  At first she held out her hand, but then changed her mind.  We ended up having to put it on her ankle - and that was a struggle.  Then they called us back and she saw the bed and hospital gown.  Oh no.  We're in a bad time period.  Old enough (and experienced enough) to know what's going on, but not old enough to understand why and be able to prepare on her own.

She broke my heart turning away from us in her stroller and shooing us away.  She wanted no love from us this morning.  Then they brought her Versed.  That definitely helped her relax.  But even still when I asked her if she wanted to sit on my lap, she shook her head "no."  Like a knife through my heart I tell you!!

It is now 9:55am and we have spoken with her ENT.  Her ear looked good, except for the large amount of ear wax gooped in her canal.  Wearing a hearing aid 12 hours a day makes things worse in that department.  So, he started us on an ear drop regimen.  Hopefully that will help.  He said her ear drum looked good and there was no sign of infection.  So he did not place another ear tube.  Which is good, I guess.  Her other one had fallen out and without any infections in recent memory (years) there was no reason to replace it.

As far as her jaw goes... he still could not use a rigid bronch.  He said that's not necessarily a reason to keep the trach.  The problem will be if she doesn't have the trach, they will not be able to intubate her for surgeries.  That's disappointing.  Not sure what would/will happen then.  He used a flexible bronch that is fed in through the nose.  He said you can use that for surgeries, but it is tricky.  Not really a concern right now, obviously.

He said that her tongue base and jaw still occluded a little bit during the bronch (when they didn't lift her jaw up out of her airway).  So, that's unfortunate.  But he said that a bronch is so subjective for her situation.  The only way to see if she can be decannulated is to have a sleep study.  She would be inpatient here, and while she's sleeping they would cap her trach and see what happens.  She does fine while awake, but sleeping could be another matter.  :(  So, we will plan to do that sometime this summer.  He said that her trachea itself looks great and healthy so if we can just keep her jaw out of the way, we'd be home free.

I am certainly disappointed overall.  I really thought that he would be able to see a positive difference from the last bronch.  But he said that it was only slightly better than the previous one.  Her jaw was just so severe at birth.  Ugh.

He said that since she doesn't have any chronic lung issues (infections, etc.) that he would decannulate her whenever she was ready - no matter the season.  So, that's good.  So, I guess we'll just get that scheduled at some point and go from there.

Moving on...

Earlier when waiting to be taken back to the OR, her ortho surgeon came to talk to us.  She said she might consider fixing the area higher up on her spine (kyphosis scoliosis) - the part that bulges out.  But, she needs to see how long she's in there and after fixing the bottom part, she needs to get x-rays to see how it affects the bulging (kyphosis) part.  They said they would call us to let us know what she decides because if she continues on, it will add another hour to her surgery time.

The negative to fusing the upper part today is that it will no longer have any growth potential.  So, that would mean that two areas of her spine would be fused and not grow.  But, she said she can't be certain that it would have grown normally anyway.  The areas are abnormal in nature from the get-go - who's to say it has any "normal" growth possible?  And any growth she does have will just keep it going more crooked.

In situations like this - I just try to not think about it and put it in their hands to make the best decision for her.  Not that I had a choice, really.  It's a good thing I was never a controlling person before Harlie came along.

So now we wait.

I wanted to show you pictures of the Ronald McDonald House and of Harlie in her hospital gown.  But, we forgot our USB cord to upload the photos from the camera!  Ugh.  So, we'll have to see what we can do about that.  I can't live all week without showing you pictures!

Oh, and during our wait to go back to the OR, we met with both anesthesiologists.  The ortho doc was pretty funny.  He said we had no idea how much planning and time has gone into preparing for this surgery.  He said he knows her history intimately and the amount of e-mails were crazy.  I told him now he knows what our daily life is like!!!  Try throwing two boys into the mix and BAM! you go crazy.  And then you want a Pug puppy.

It's now 10:36 and I just heard from Tom that the tire is plugged and it only cost $17.  We were nervous that we were doing some damage to the tire driving on it to get here.  So, hopefully that will last us a while.

Okay, I will update you more later.  Thank you for all your comments, messages, texts, etc. of support and encouragement.  I can't tell you how much your outpouring of love for us makes us feel during hard times like these.  While my heart breaks in some places, it swells full in others.  Thank you for that!

xo,
~Christy

In DC and ready for tomorrow.

Well, I didn't get to blog like I wanted.  Nothing new there.  We are all settled in at the DC Ronald McDonald House now.  That seemed to take forever.  Tomorrow is going to be a long day, and I can already tell that I'm not going to get much sleep.  I forgot to pack Harlie's feeding pump so she can two ounces of Pedialyte per hour through the night.  Ugh!  The docs want her to be well hydrated before surgery.  It is much easier to get into veins that are hydrated.  So, I guess I'm going to have to get up a few times to bolus her some fluids.  Darn it.

The RMH here is super nice.  It is a brand new building and is like a hotel (versus a house like the old one).  I think it will make a difference in how we feel coming "home" each night.  When you have a comfortable place to go after a stressful day, it's so appreciated!

So, I'll just tell you about our nutrition appointment really quick.  We went on Friday.  They said she looks so great.  We started calorie boosting a few months ago - in December, I think (because she lost a pound).  So, they wanted her to gain 5 grams per day.  She gained 15 grams per day!!!!  Wow!  Well, I could tell she was putting on some good weight.  So, about a month ago I backed off on how much we were boosting her food.  It's a good thing, huh?

She now weighs 34 pounds and she is 38 inches tall.  That puts her in the 25th to 50th percentile for weight and 10th for height.  Wow!  She has come a long way.

Well, I'm going to wrap this up for now.  Tomorrow is going to be a long day.  We have to be there at 6:30am.  I'll try to catch up on my blogging while we are waiting.  And waiting.  And waiting some more.

Thanks!
~Christy

Saturday, March 26, 2011

Pre-Op Day

We went to DC on Thursday for her pre-op appointment.  It was fine.  Traffic up there wasn't that bad, which always makes me happy (yeah, it doesn't take much).  We met with a cardiac anesthesiologist (CA) - the one that was with Harlie when she was transported from Washington Hospital Center right after she was born.  She told me that she remembered Harlie from then (which I think is amazing considering how many kids she's seen over the years).

Anyway, she said that a CA and an ortho anesthesiologist (one that is very familiar with spinal fusions) will be working together on her case during the surgery.  I am very happy about that.  She will go to the CICU (cardiac intensive care unit) immediately after surgery.  But after that, we're not sure where she'll go.  She will either go to the HKU (heart and kidney unit) or the ortho recovery unit.  They will have to see how she's doing cardiac-wise to figure that out.  Should she be cared for by heart nurses or nurses that know spinal fusion surgeries and body casts?  I can't help but think that if she is stable cardiac-wise that maybe ortho nurses should care for her.  But, we'll have to see what the team thinks at that time.

At some point during our conversation she said that if a doc were to read Harlie's medical history and then meet her - they would not think they were the same person.  I just love hearing this.  It really goes to show how incredibly strong she is and how hard we have all worked to get her this far.  And by all - I mean everyone that's worked with us to help her.  Harlie's team of professionals is a large group of wonderful people that includes her nurses, therapists, nutritionist, teachers, etc.  One day I want to write something like "Meet Harlie's Team" or something with pictures of them.  I just think they are such wonderful people for doing what they do everyday.

It's really weird how I think she's doing so great and we are getting closer to normal as the years go by.  She's just a little girl to us now.  But, to them she is a complex medical patient.  It's just a weird transition to make as we go into another hospital stay.

Anyway, as far as details of the day go:

Surgery is scheduled for 8:30am.  We have to be there at 6:30am.  Harlie's ENT will go first and will work on her ear (in desperate need for that!) and put a new tube in.  This will be her fourth.  And the last time he put in a "t" tube that is supposed to last years - hers still only lasted less than a year.  I'm not sure what, if anything, we can do about the fact that her ear won't hold on to tubes.  It's frustrating because we really have to do everything we can to take good care of that ear - it's the only one she has!

Then he will do a bronchoscopy.  This is a really big deal this time.  It will be her first bronch since her last jaw reconstruction surgery in December 2009.  It has been well over a year since, so it's pretty safe to say that her jaw isn't going to recede anymore than it has.  And she's been doing great wearing her PMV (speaking valve, which allows her to inhale through the trach, and forces her to exhale out her mouth and nose) most of the day, on most days.  She's even learned that she can still cough while wearing one.  And sneeze - which is the cutest sound EVER!

So, I have high hopes that her airway is free and clear and is no longer obstructed by the base of her tongue.  This is the first time I've felt this way.  And it is a little scary.  Daydreaming about life without a trach is dangerous.  I'd rather not go there if we're still years away.   At this point, I would just like to be able to talk about it with her ENT as being a possibility in the near future.

On the negative side - if he comes out and says that her airway is NOT free and clear of the obstruction, I will be devastated.  Not that I've gotten my hopes up (even though I have) but because that would mean that two jaw reconstructions haven't worked enough to get that trach out.  I know she needs another one anyway (her jaw is very asymmetrical and chewing would be very difficult).  But if two didn't work, then who's to say that a third would?  Too scary to think about.

So, they said he needs an hour, so hopefully we'll know something by mid-morning.

After he's done, her ortho surgeon will start the spinal fusion surgery.  I think they told me that will take four or five hours.  So, it will be a long day.  This time we'll have internet access (YAY!) so I'll be updating the blog throughout the day.  It's a good stress reliever for me.  I'm not sure what it does for you.

So, after we were finished discussing the day and her history, we went down to the lab.  They didn't need to take that much blood (which is great).  But they are going to have two liters on hand during the surgery because they said that bone bleeds pretty heavily.  Yuck.   We got Albert - we've had him before - and he's really good.  He got her on the first try and without having to put the tourniquet on in six places first.  He put it on, and stuck her and it was done.  She hasn't gotten that if she stays still it will be over quicker.

Brandy holding Harlie during a blood draw.
After blood work, we were done.  It was about 2:00 I think.  Since we were there at lunch time, and we were HUNGRY I went to the cafeteria to see if they had anything interesting.  But, I couldn't do it.  We will be eating there more than I will like this week.  So, we stopped on our way home.

Harlie rode the whole way home with her right hand behind her back, as if protecting it.  Then we got home, and she walked around and watched a movie like this...


She didn't move her hand from behind her back until bath time that night.  Oh, if that's how she feels about one blood draw - I don't even want to think about how she's going to feel about wearing a cast!!!

Well, that's it for the day.  That night I went out with my girlfriends.  But, more on that later.

Thanks for reading!
~Christy

What I want to blog about...

So much to blog, so little time.  I'm going to try to get all caught up before Monday.  Here's what I want to tell you about:

Harlie's last day of school (for now)
Pre-op day in DC
Girl's night
Gymnastics
Nutrition appointment
Picasso
Brandy's 4 year anniversary (which was Feb. 14th, sadly enough)

So, stay tuned!  Hopefully, the events of today and Sunday will still allow me some computer time.

More soon!
~Christy

Thursday, March 24, 2011

Back to DC for Pre-Op

Today is pre-op day in DC.  They will take some blood (dreading that, of course) and we'll meet with anesthesia.  Hopefully it won't take that long.  I'd like to be back home by mid-afternoon.  We'll see.

So, Monday was scheduled haircut day.  Yay!  I'm totally digging this!  Kim came out again and cut all the kid's hair this time.


Cooper finally realized that haircuts don't hurt.  YAY!  So, he was great and it was a totally different experience than having him cry and fight the whole time.


And here's what Harlie's looks like from the back.


It was getting long again and I think she looks better with her hair short.  And it is SO much easier for trach care to have it off her neck a little.  Especially considering she'll be in a cast and we won't be able to do much with it anyway.  I might even have her go shorter next time.  I think Harlie likes it better, too.

I am loving having Kim come out to our house.  She comes at 3:00, and on Monday Harlie had a doctor's appointment at 4:10.  She cut all their hair and then I took Harlie to the doctor - no problem.  Sweet!

I have to go and get ready for the day - but I wanted to share one more thing...

I was thinking about our trip on Sunday to DC and the fact that I would have to pack a ton of stuff for Harlie to sleep for one very short night at the Ronald McDonald House.  So, I thought maybe we should try having her sleep in an HME (heat and moisture exchanger),

which would mean we would have to take WAY less stuff.  I had read that some kids sleep in the them instead of using a trach collar with the heated humidity system, which involves an air compressor (makes a lot of noise) and a heater and a bag of water.  She's not on oxygen - regularly - anymore.  So, the other night we tried it out to see how it worked.

Here's the heater, trach collar and bag on the IV pole and all the tubes are connected to an air compressor and oxygen concentrator down the hall...



We love it!  She is no different in the morning than usual (the mornings are always junky with lots of suctioning from her laying down all night).  And the night is SO much quieter!  What a difference!  Plus, I really think that she is more comfortable.  She is so hot-natured and to have that hot air blowing on her neck all night had to have been a little uncomfortable.

For some reason, having her sleep this way feels so freeing for us.  It just seems a smidge closer to "normal."  I don't know why, it just does.  And we are so excited about it!

Okay, time to run.  Lots to do... Have a great day!
~Christy

Monday, March 21, 2011

Misc. Stuff

On Saturday, Murphy and his friend, C, went for a ride on their bikes.  Not very long into it, Murphy ran into C's back tire and took a tumble.  His face was a bloody mess.  And just in case you're wondering - he was wearing a helmet, thank you very much.  This is how he looked that night:


He's been so good about it and he hasn't used his injuries - or his pitiful looking face - to get anything.  I think school today was a little difficult.  He said everyone asked him what happened.  Even people he didn't know.  He said he got so tired of answering the question that he started telling them to ask someone else!  Yikes!  That's not exactly polite.  But, he's 6 and I get his point, too.  And speaking of polite - one girl in his class told classmates as they entered the class this morning to, "Look at Murphy's face!"  Nice.

And Murphy's school photos are next week!  Perfect!

I thought to myself that it's a good thing Harlie isn't at home with a body cast right now.  We would not be looking so good as parents if we went out in public with Murphy's face and Harlie in a body cast!  No one be alarmed!!!  All is good here and our children are safe and well loved!  

Just a side note, Harlie's surgery is one week from today.  Well, six days by the time most people read this.  Hard to believe that it is so close.  And weird to have the "last" whatever for the next 6-8 weeks.  Like this past Thursday was her last therapy day (we'll be in DC for pre-op this coming Thursday).  This Wednesday will be her last day of school.  Friday will be her last day of gymnastics.  Not sure when she'll be ready to return for any of those things.  We'll just have to see how her recovery goes, of course.

Oh, and Baby Sarah got her cast off this weekend.  Harlie spent some time in class today studying her and the cast that was cut apart.

Which reminds me, last Thursday between therapies, we went to Toys R Us to let Harlie pick out her own baby doll.  We are going to give it to the docs when she goes into surgery and have them cast the baby to match Harlie.  I was thinking if she picked it out herself, she might like it as much as she likes Baby Sarah.

Well, Harlie didn't get that she could pick something out and take it home with her.  Even though I think it is wonderful that I have a child that asks for NOTHING materialistic - it still seems sad to me.  It's just so ... unnatural!  Finally, Brandy and I picked a couple babies for her to choose from (and while we were looking in the baby aisle, she walked up carrying a FurReal cat.  Then she left and returned with a FurReal dog.  So, I added a dog to her choices.  I put them all in a row on the bottom shelf and asked her which one she wanted to take home.  And she chose THE DOG!!!

Seriously, people.  This child WANTS a darn dog (language edited since I don't know who's reading my blog - BUT - if you know me well, you know what I want to say).  The dog walks, barks and pants.  He's pretty cute - for a toy.  But, he is NOT the same as a real dog.

And to make things worse - I was talking with someone about my desire for a Pug puppy and she said that she knows someone who breeds them.  She called me today and gave me their info.  And they have one male puppy (8 weeks old) that's still available!  He is there right now, without a home!  And he is oh so cute!  Just see for yourself:


See?  The cutest thing ever, isn't he?  Wouldn't it be totally awesome if my great husband went and got him and surprised us???  Ha.  I wish.  Not going to happen.  But he looks like he would fit so great in my home!  I can just see him now... and I think he needs us!  I can tell.

Okay, it's late and I have to stop thinking of that adorable Pug puppy.  Who won't be mine.  Ours, I mean.  Ours.

Thanks,
Christy

Sunday, March 20, 2011

Cooper

Cooper is talking more and more every day.  I was slightly concerned a few months ago.  But, in the last few weeks, he has really made some crazy progress.  Honestly, one of the things that I think sparked his talking interest was the show Signing Time.   He repeats every word he can while watching it.  I think we have every video (thank you to the contributors of The Harlie Fund).  And he signs, too!

Tonight, as we were getting the kids ready for bed, Cooper and Murphy were running around wildly.  I was about to change Harlie's trach and didn't want Cooper running around us.  So, I looked at him and said, "Cooper, I think it's time you sit and look at some books." Then he said, "No way.  Cookies!  Cookies!" and ran out of the room.

Well, I'm glad we had this talk, Cooper.

I was thinking I should start writing things down, or I'm going to forget.  So, at this point my favorite words he says are:

1.  Cuppycake (for cupcake)
2.  P.B. (for T.V.)
3.  Ben (for Murphy)  I really don't get this one AT ALL.  We've all racked our brains and we've come up with SQUAT.  I certainly get that Ben is easier to say than Murphy.  But I don't know where on earth he came up with it.
4.  R.E. (for Harlie)  Now that's just cute.
5.  Mommy (for Daddy)  I have to admit that this isn't a favorite.  I think it's just worthy of noting.  Trust me when I say he says Mommy just PLENTY when referring to me alone.  To add Mommy for Daddy, well that's just mean.

Here's him talking a few months back - before the vocabulary increase.  But I probably didn't need to tell you that.  I'm pretty sure you would have figured that out for yourself...

video

He still goes on rants like that.  If only I knew what he was saying.  I'll give you a million dollars if you can figure it out.  Good luck!

Thanks,
Christy

Wednesday, March 16, 2011

Casting Event

So, at my parent/teacher conference with Harlie's preschool teacher and hearing impaired teacher, I asked them for advice regarding Harlie's upcoming spinal fusion recovery.  This time we are going to talk to her before surgery and do our best to explain what's coming.  And one thing that concerned me was how I was going to explain that the cast is only temporary - and it WILL come off in time.  I visualize her "coming to" from surgery and realizing that she can't move and looking down and seeing a scary cast.

So, a few days after the conference, her HI teacher came up with a fabulous idea:  cast her favorite baby doll in class, get a calendar, mark a date for the cast removal and every day in between, make a big deal of marking off the days.  She gets to see the cast, touch the cast, and completely "get" that the cast is only temporary.  Genius!!!

Mrs. S found a nurse to come to class with the casting supplies to cast the baby (named, Sarah).  Mental note: get the name of the nurse and send her a thank you note!

Last week was the big event.  It was a class activity and it was all for Harlie!  So, so sweet.  How great it is to be surrounded by people like that.  I just can't thank them enough!

Here are some clips of the event:

video



video

Apparently Harlie loves Sarah, and has been playing with her all the time - taking her potty, feeding her and just loving her.  Which is so weird because she doesn't do that at home with her babies.  I mean some, but not like what they describe she does at school.   I guess it's Sarah that she loves - not all babies.

The cast comes off next week.  I really think that her seeing Sarah in a cast is going to pay off.

And then, get this... the other day I came across a show on Video on Demand - Bubble Guppies.  I pressed play and the episode (called "Call a Clambulance") was about a fish that breaks his tail and has to go to the hospital for a cast!  How awesome is that?!??!  And since he was a fish, his cast looks like a body cast.  Perfect!  She's asked to watch it several times since then.

So, hopefully she won't be too scared when she wakes up and realizes she's in a cast.  Ugh.  The day is quickly approaching - just a week and a half now - March 28th.  At this point, I just want it to get here.  The sooner it goes on, the sooner it comes off.  Sometimes it kills me how much time I wish away.  That's just not right.

Well, that's it for tonight.  More later!

Thanks,
~Christy

Sign of the Day

I know - I've been super slack on my signs of the day.  But, in my defense, I've had such little computer time.  It is such a luxury around here!  So, in honor of my last post...

Monday, March 14, 2011

Camping Out

I did something on Friday night that I never thought I would ever do.

I camped out - in line - so Harlie could have a spot in a summer camp provided by the county we live in.  The camp is two weeks long, Monday through Friday, 9am to 12 noon, for just $30!!!  And it is right across the street from my neighborhood.

Every year, in mid-March, the county has summer camp registration.  Some of the camps have on-line registration available (like Murphy's Summer Blast program - which is FREE!!!). But some camps require walk-in registration, like Harlie's Kinder Camp.

Registration starts at 8am.  But the line forms 12 hours prior!!!!  NO JOKE!

Last year, my friend Jennifer signed her daughter (Kyleigh) up for one of these camps.  She arrived to get in line at around 3am (I think).  But, she did not get her first choices for location.  Which was a bummer.

Some other friends of mine camped out for the night.  And to be honest, it seemed RIDICULOUS to me.  And there was NO way I was going to do something that crazy.  Last year, Tom was out of town, so there was no way I could do it anyway.  But, luckily the Summer Blast programs are available to register on-line.  But it fills up in minutes.  It's FREE, afterall.

So, registration was past, and summer arrived.  And a few times Harlie and I had to take or pick Kyleigh up from her camp.  Oh, Harlie was so sad to not be able to stay and play with her!  Everything looked so fun!  So, mental note:  perhaps I should re-consider my feelings toward registration.

Fast forward to last week, with registration time quickly approaching.  Jennifer tells me that she is not making the same mistake as last year.  Getting there in the wee hours of the morning did not work out so well.  So, her plan this year?  Get there super early, set up a tent, and make a night out of it.  She got a babysitter for the night and her husband was going to camp with her so she wasn't alone.  Hmmmm.

And that's when the words I never thought I would speak, were spoken.

Maybe I could camp out with you so I can register Harlie, too.  

ACK!!!!  Even as I spoke, I could feel my insides cringing.  It is COLD outside.  And we would be completely exposed to any crazy person walking along wanting to inflict harm on someone not locked safely away in a house!

But then Jennifer told me that the police station is in the same parking lot and there are police officers coming and going all night.  She said, "I'm pretty sure we'll be okay."

Oh, alright then.  Mental note to self:  look into getting that taser gun...

So, her husband was super happy because he didn't have to do something so stupid as camping out in the Public Safety (I forgot that's actually the name of the building, now it seems even funnier) parking lot in 30 degree temperatures.  No, that would be ME.  And Jennifer.  And she didn't have to pay a babysitter.  So, I was doing a good thing.  For everyone.  Really.  

Friday night arrives and plans are set.  Jennifer will go and set up at 8pm and I will get there as soon as the kids are in bed.  At 7pm, the phone rings and it's Jennifer.  She's already there!  Tom said, "Tell her the Grateful Dead stopped touring 10 years ago."

Ahh, too funny.

And the best part?  SHE'S FIRST IN LINE!  It really cracks me up - this whole situation.

So, I got there around 8:30ish.  Brrrrrrrrrr!!!!

Tents were set up this way (that's Jennifer by the way)...


And that way...


Jennifer's friend, Monica (she wouldn't let me take her picture), came to bring some hats and gloves and to have a drink with us.  Shhhh, don't tell anyone.  I don't think you're supposed to drink on county property.  


Just hanging out, having fun...


...freezing our asses off.  

Going to pee was no picnic, either.  

I slept in long pants, socks, tennis shoes, a tank top, two long sleeved shirts, a heavy fleece jacket, a scarf, a hat, gloves, a North Face sleeping bag (rated for low temps), AND a fleece blanket.  Comfy.

Jennifer was so cold during the night that she put her gloves on her feet.



Jennifer provided the chairs - camping ones (really nice!) that recline.  Unfortunately, I had to have most of my body weight on the upper portion of the chair to keep it in the reclining position.  If I straightened my legs out - the chair started to go in the upright position.  Ugh.  

The other negative things about the night were:

1)  the dude that was second in line brought a television and watched old shoot-em-up movies.  So, it kinda felt like we were in a war-ravaged country.  Not really what I was expecting.  At about midnight, Jennifer looked out the tent window and he wasn't even watching it!!!  So she asked someone to turn it down.  He finally turned it off a few minutes later.  Seriously, you can't go one lousy evening without watching television??  Loser.  Luckily, this is the last year for summer camp for his kid.  So, he won't be back.  And yes, this means that I will be.  Yay for me.

2)  At about 11:30ish the party people showed up.  You know there's always one group that thinks they are so funny that everyone wants hear them.  Well, on our way back to the tent from a little walk to the woods, we met them while they were unloading.  Geez.  They clearly make this an annual "event" complete with a full-on poker table, grill and generator.  And no, they never slept.  Yay for us.  

3) I pictured a bunch of moms hanging out in line, chatting.  No.  Most of the line was full of dads.  And boy did I feel STUPID.  Of course all the smart moms send the dads to camp out in the cold.  But, no, not us.  Next year, we're changing things up a bit.  That was an event that Tom would totally love.  He would know everyone in line within minutes.  Yay for him.

This is how long the line was in the wee hours of daylight on Saturday morning:


It was during this time that we smelled breakfast cooking.  Yum.  Jennifer ran to get us some fast food biscuits and caffeine.  


I know it's hard to see... but trust me, this line was LONG.  An aerial shot would better illustrate it.  And look at all the people that just sat in chairs - with no tent - all night long!  Now they are crazy.  Not us.  Nope.  Them.

While taking down the tent and putting stuff in my car, I met some people in line.  They saw that I came from up front and asked me what time I got there.  So, I asked them the same -  2:30am.  And they were far in line.  No thanks.  I told them there is no way I would leave my nice warm bed, to wake up and go sit in the cold at 2:30am.  It was better for me to just start out the night like that.  Granted, I didn't get much sleep, but still.  

Finally, 7:55am arrived, and we were all in line, ready to register!  It really was funny.  Funny conversations, funny situation.  Then an employee came out and asked us to follow him.  We walked forever around in there (trying to make the line as long as possible inside the building so people could come out of the cold - isn't that nice?).  Then we got to the registration room.  Yay!  

It was hysterical because a guy was waving us back while walking backwards in front of us.  He said, "We will not begin registration until 8 o'clock.  GET READY PEOPLE!"  He was talking to the employees - who looked extremely frightened.  And I don't blame them.  

There were 15 people poised and ready at lap tops.  Jennifer and I went to spots 1 and 2 and I had to bust out laughing.  All this for summer camp?  Funny!


The lady that was helping Jennifer said she had knots in her stomach, she was so nervous.  She said they were afraid that they would mess things up and our kids wouldn't get in after we spent all night in line.  I highly doubt she's getting paid enough to compensate her for that kind of stress.


This is the dude (in the red coat) that watched, what I can only assume, was Rambo...like 3 times.


See that line?  And that was just a fraction of it!  I really wish I could have gotten a photo to truly illustrate the craziness of it all.  And - as if that isn't enough people - this was just ONE registration location!  There is another one on the other side of town.  But one could only assume that they are registering for locations on that side of town.  

So, in summary, I got Murphy all signed up for Summer Blast, and Harlie for Kinder Camp.  And Jennifer got her son signed up for an older kids camp and Kyleigh for Kinder Camp.   All our first choices, of course.  

Yay!  

Then we went home.  The end.

And people say I'm crazy for wanting a dog...  No.  I'm just CRAZY!!!  And I wasn't before I had kids.  Just sayin'. 

Oh!  And the next morning Tom and I realized that was the FIRST night that I have been away and Tom was here with the kids alone.  Ever.  Now that's just sad.  I predict some girl's weekends in my future.  

Thanks,
~Christy