Update

I started a post over a week ago... but never was able to finish it.  I'll keep it at the bottom of this post.  But, want to give you a little summary first.

Overall, Harlie is doing great with no trach!  The nights are way better than the first several after coming home.  She seems happier (and she was happy before!).

The second we got home from the hospital I went upstairs and started to remove all trach stuff from her room.  Stuff like her IV pole, her heater/humidifier, inhalation bag, stationary suction machine, HMEs, suction filters, etc.

WOW!  What a difference that made in the look of her room!  It is already more kid-friendly and that is so exciting!

The next day when Brandy came in to work, she couldn't wait to go through all the supplies and clean out everything we no longer need.  It is amazing how much stuff goes along with having a trach.  I've known that all along.  But seeing all the equipment and supplies piled up and ready to leave this house is amazing.  It is so hard to believe this is our new, improved reality!!!

And I just can't describe what it feels like to be so free - no suction machine to think about, no emergency trach supplies to keep on hand wherever we go.  It's pretty amazing.

I've actually been having a hard time writing about it!  This is at least my 5th attempt at blogging in the last several weeks and it doesn't feel normal.  The words aren't flowing.  So, I've been giving up and saying to myself that I'll come back when I'm more in a blogging mood.  It just all feels weird.

Maybe it's because this was such a huge, monumental big deal to us.  We had to work so hard to get to this point.  And we had to put Harlie through so much torture to try and give her a better airway.  An airway that most are just born with.  And we did alright by her.  Two out of the four jaw reconstructions worked!  Traveling to Boston Children's Hospital was the right call.  And worth every penny.  Knowing that I made the right decisions (when smaller tasks seem so difficult) is a feeling I just can't describe.

I hope that when I say "thank you" for rejoicing with us, you know how much I mean it.  To finally get to share FANTASTIC news and hear "congratulations" and "cheers" was a feeling like no other.  Thank you so much for sharing in our joy and huge success!  It has meant so much to us!

We have been very busy since, and I have plenty more to share.  But, will have to save it for another day.

Much Love,
Christy xo

Here is what I started on a while ago:

August 19

So, how is Harlie doing a week post-decan?

Great!  She really seems to be very happy that it's gone.

I'll start with where I left off - in the hospital.  On Monday afternoon, Harlie's cardiologist came back by to see me.  We got caught up on things.  It had been a while since she had seen Harlie.  I feel like I need to go back a bit to explain where we are.

I have taken Harlie to hundreds of doctor's appointments.  And most of them were because she was sick.  So, I have a hard time with taking her for well checks.  For one, doctor's offices are pretty germy places, and in general, I try to keep her away.  And two, we're over it.  She's the healthiest she's ever been and we are trying to just live our lives.  I do take her to her pediatrician's well checks for her immunizations and to bring her pediatrician up to speed.  But, really, that's the only well check we do regularly and on schedule.

But, she has a pretty complicated heart condition with a pacemaker and apparently, I need to be better about scheduling those well checks.  Who knew?

So, she has her cardiologist in DC (who we've seen since I was pregnant with Harlie) and after Harlie was born, we started seeing a cardiologist in Richmond.  It was important to have one in both areas so we didn't have to drive to DC all the time (back in the day we were seeing one of the two fairly often) and so when she was in our local hospital, she had a cardiologist that could follow her.

Well, as time has slipped by and Harlie has gotten healthier, we've really only seen her local cardiologist for pacemaker checks.  And those checks were not really "well checks" since we had a problem and he had to fix it by adjusting her pacemaker.  After he adjusted in June of 2014, we went for a follow up a few months later (I think in September) and I don't think I've taken her back since.  Everything seems good, I know her battery is good (it's good for like years), we're busy living life, so I just don't think about it.

So, apparently, Harlie hasn't had a true cardiology well check in some time.  And it's been almost a year since her last pacemaker check.  So, her cardiologist suggested that she get an echo (ultrasound of her heart) while she was there.  And depending on how Wednesday night went, get the pacemaker doc back up to see her.  So, all of that would count as a well check and I don't have to worry about it for another year.  Awesome.

Wednesday night went pretty much the same as Tuesday night - with her low heart rate alarm blaring all night.  So, the pacemaker folks returned Thursday morning.  They told me that they want me to do phone checks every three months - where you put the phone up to the pacemaker and it sends info to the office.  We aren't set up for that yet.  So, they are going to send me what I need for that.

And she got her echo.

So, after all that was done, she was ready to go.

The first night at home was rough.  We woke up at 3:30am because she was so noisy.  We sleep with a baby monitor on so we can hear her and her alarm, should it alarm in the night.  We went and propped her up with pillows.

Unfortunately, I didn't think that through at the hospital.  In the hospital she was sleeping with the bed propped up.  For her whole life, every time we've been in the hospital, she likes to be in a more sitting up position.  So, when I tried to flatten it out the first night, she stopped me and pushed the buttons for the head of the bed to go back up.  Not a battle I should fight, and if it makes her happy, so be it.

Except we were not recreating our home conditions.  And when she was sleeping flat at home, she sounded terrible!  And it was scarier than I realized it would be.  Worrying about your child's breathing abilities in the middle of the night is no fun at all.  Luckily, her sats and heart rate looked good.  I took some video of her sleeping and sent it to two of my trach mom friends who live out west.  I was hoping that one of them was still awake.  And my friend Ann responded and made me feel so much better.  After years of being told to read the patient, not the monitor - I needed to read the monitor, not the patient.

But, after putting some pillows under her, she seemed a lot better.

Since then, each night has gotten better.  Tom got a wedge pillow and that has been great.  She realized soon after getting home that she didn't want to wear a bandage on her neck anymore.  She seems really proud of her naked neck now.

Thank you.

Hi!  Well, so much has happened since my last post.  I really don't know where to start.  

I am in prep mode for surgery.  I can't believe that we are less than six weeks out from surgery now.  I am sure it will fly by.  Over the weekend I had some minor panic attacks over the preparations that still need to happen.  The biggest thing is that Harlie needs a CT scan so her surgeon can fabricate the devices for her surgery.  It seems silly to go to Boston for a CT scan.  So, we are going to get the scan here and mail it to her.  But, considering we are six weeks out, we have little to no room for error.  Which makes me super nervous.  

Years ago, Harlie was getting ready for heart surgery.  Sadly, I can't remember which one.  I suppose that happens when you've had five.  Anyway, she had to have a heart cath prior to.  We chose to have it done here in Richmond and have it mailed to DC.  For whatever reason (I'm not judging here - just stating the facts) DC wasn't happy with the image quality from the heart cath.  So, Harlie had to have another heart cath - in DC - and that pushed back her heart surgery date.  There's an emotional issue with changing a surgery date.  I don't know why exactly.  But, it's true (at least for me, anyway).  And of course, there's anesthesia and an annoying recovery involved with a heart cath.  So, having to repeat it was a total bummer.  I really don't want to repeat that learning experience.  

So, we need to get the CT scan done asap.  What if it gets up to Boston and the image quality isn't up to par?  I'm no radiologist.  So, how would I know?  Well, I spoke with the surgeon's office on Monday and they agreed - this CT scan needs to happen ASAP.  I found out by the end of Monday that it is scheduled for tomorrow (Wednesday) at 10:30am.  Awesome.  

Until I realized that is at the same time as Cooper's preschool end of year program.  No biggie.  Except that he has a speaking part.  One line.  But STILL!!!  I wanted to be there to watch Cooper speak!!  I am so sad.  Now I just have to hope that Tom can make it there.  

In other news...

On Saturday, May 18th, we had our second We Heart Harlie event.  It was incredible.  I have so much to say about this day, that it definitely requires its own special post (of course!!).  So, I can only say that I am truly overwhelmed by the love and support that our family has received.  From everyone.  

Lynda Reider.  Wow.  She's AMAZING!  Seriously.  I don't know how I got so lucky when she entered our lives.  I just can't say enough good things about that woman.  She has put so much energy and passion into supporting us. It's unreal.  I'm sure her husband has cursed our names at least once or twice. I don't know how I'll ever be able to thank her for what she's done for our family and for our little girl.  I really do believe that she has changed the course of Harlie's life.  I'll talk more about this later in this post.  You'll agree with me, I'm sure.  

Daisy Troop 5091 Moms and Daisies.  I don't think that these women and girls had any idea what they were getting into when they joined the same Girl Scout troop as Harlie and I.  To all of you, I'm sorry.  ;-)  But you girls have jumped in and loved and supported us.  You are appreciated more than you'll ever know.  

Our Family and Friends (who know us, including those who I've never met, but I consider dear friends - you know who you are!).  I know we come with baggage.  You don't have to support us through ONE hard time.  You have to support us through YEARS of hard times.  Through MANY surgeries.  And I know that's difficult.  Honestly, I don't know how you all do it.  I'm exhausted living my life.  I can't imagine how exhausting it is to have to support me living this life.  I get it.  And I'm sorry.  I wish there wasn't a need. I wish I could be more supportive of each and every one of you.  I wish I could be more of a giver than a receiver.  But I hope you know that when I have a bad day, I think of all of you and you give me strength.  Thank you.  

Supporters I've never met.  And those supporters who came out and walked in the rain on Saturday.  This may sound egotistical, but I don't mean it that way... I hear that I'm amazing fairly often.  For the record, I don't believe it.  I am just an ordinary person (albeit, a naturally positive person) trying to have a happy, good life, and provide a happy, good life for my kids.  I don't have a higher-than-average intelligence.  Or a talent.  I have the same goals as many.  But you - I think YOU are amazing!!!  You are supporting us - my family, our daughter - without knowing us!  You are generous with your money and your time and your energy.  That is amazing!!!  I wish I could thank each and every one of you individually.  Many of you came out in the RAIN to run, or walk.  Many of you made the We Heart Harlie event your priority for the morning.  I am just blown away by you.  I wish I could shake your hand, give you a big hug and tell you what you're doing for my family.  

What are all of you doing for me and my family?  For Harlie?

For me and my family:

I'll be honest.  Some days are REALLY hard.  I don't like to talk about those days.  I'd much rather be positive. But some days it's hard to be positive.  And most of the time, I don't write when I feel like that.  And when I struggle like that I think of all of you.  Lynda, Daisy moms, Daisy girls, family, friends, strangers... and you all get me through.  You don't know it.  But you do.  Somehow, I am not on meds and I'm not an alcoholic.  I think I have you to thank for that.

For Harlie:

She is six years old and she doesn't seem to have an ounce of a self esteem issue.  Isn't that amazing?!  When she was born, I pictured a completely different future for her.  And it wasn't the kind of future you'd ever want for your child.  I never, in a million years, dreamed of her being surrounded by a group of girls singing "That's what makes you beautiful."  Or of kids selling lemonade to collect money for her.  Or of kids giving her their piggy banks.  

She's confident.  She's headstrong.  And she knows she's loved.  How can a mother thank you for that?  HOW?!?!?!?

I'll post again about the event, with pictures.  It really was amazing.  When I think about it, I shake my head.  I keep thinking, "How?  How did we get so lucky?"  So many wonderful people there.  So much love.  Thank you.  Thank you.  Thank you.  

Much love,

Christy xo

We Heart Harlie

The We Heart Harlie event is right around the corner.  The big day is May 18th.  Lynda Reider has been working so hard!  Just look at this flyer!

Wow, right?  Thank you to Courtney Lynch (and her company and employees) for this beautiful flyer!  I think she did a great job!  And thank you to Paige Stevens Photography for the beautiful pictures of Harlie!  I will post the rest soon.  They are just beautiful!!

This year the raffle and 5k have been combined into one day.  And Lynda has been working her magic getting lots of fun stuff organized.  She even got a firetruck lined up to be there.  There are going to be lots of good raffle prizes - I'll post a list soon.

We got new t-shirts designed and ordered, and they should be in any day now.  I'm so excited!  You can order them when you register for the 5k, or you can buy them the day of the event.

Here is the link to register.  http://www.racerpal.com/races/WeHeartHarlie.html

Harlie's school is so incredibly supportive of her.  It really is amazing.  The PTA passed out papers for the students to cut out hearts and decorate them.  Then they post them on the wall in the school - Hearts for Harlie.

They are going to do this through the month of May.  Isn't that the sweetest thing?  I want to share a Facebook comment from a friend of mine, Beckie:

What a thoughtful project.  So good for Harlie, but such a learning experience for the other children.  Kudos to teachers who see beyond the "book learning" and take advantage of such a powerful example that can't be taught any other way!"

I am truly thankful for how amazing Harlie's school (both administrative staff and students) has been to her and to our family. I never dreamed it would be like this.  And Harlie knows that wall is in support of her.

Today, she studied it.  And she picked one of the hearts off the wall.  It was a drawing of a little girl standing next to another little girl.  And the smaller girl is clearly a drawing of Harlie.  It has her bow and her trach.  It was drawn by a fellow Daisy.  I don't think Harlie realizes that.  But, she knows the picture is of her and another little girl.  And Terri told me that she held on to it all day.  And as soon as she walked into the house this afternoon, she showed it to me.  The whole thing is overwhelming.  I really had NO idea how loved she would be by other kids.  I feared the world was a lot more cruel.  I have never been more glad to be wrong.

Lynda runs the We Heart Harlie Facebook page.  And she's been working on the route for the 5k.  Since we will be running on a main road, she's had to get the help of some Henrico County police officers to help with traffic control.  I really don't know how she finds the time to do all that she does.  (And she leads a Daisy troop, too!)

She also wrote this story and submitted it to Richmond Family Magazine.  Isn't she something?  Truly!  I don't know how in the world I'm ever going to be able to thank her enough.  I think her husband is really looking forward to May 19th - when she doesn't have to spend so much time and energy on the Holton family!  Lynda and Rich - thank you!!

Much love,
Christy xo

Finally! An Update!

Wow. Almost a month since my last post!  I think that might be a record.  And not a good one, either.  I need to blog.  It really helps organize things in my head.  And it just makes me feel better overall.  So, when I go this long without blogging, it's just not good.  It also means that I'm too busy.  And that's never good.  Because odds are I'm not busy doing fun things.

I'll start by just trying to get you caught up on some stuff...

On March 23rd the cleaning people came to clean my house thanks to our wonderful friends - the Gasperini family, David and Wendy Miller, Carla Mentry, Kathleen Allen, Jill Wheelin, Holly Cowan, John and Allison Schmitt, Chris and Carol Cousins, Brad and Michelle Onofrio, Sally Young, Stephanie Madden and Harlie's incredibly supportive Daisy troop!  Seriously!!  Can you believe how much we are loved?  Because sometimes I can't!  How did we get so lucky to have such wonderful people in our lives?  I think about that more often than you know.  They all helped to get us TWO house cleanings and a Target gift card!

This was the first cleaning and I can't tell you how WONDERFUL it was to come home to a sparkling clean and fresh home!  It took two people, four hours to clean it from top to bottom (even my ceiling fans!).  So, if I had done it, it would have taken me eight hours and trust me when I say I can't ever imagine a day where I could spend eight hours cleaning!  NEVER!  As it is, I do a bathroom here and there, vacuum one day, do bedrooms another day, etc.  So, it never feels clean.  Oh, how wonderful and luxurious it felt!  And to think we'll get to feel that again soon!  Wow!  Since it's been so darn long since I last blogged - they got this for us during my kidney stone/family flu dark days.  I think we are all better off with a good cleaning to get rid of those winter germs!

Cooper also had his very first soccer game that day.  You might remember that I was a little nervous he would cry.  But, he didn't.  And it appeared that he never even wanted to cry.  So, that was awesome.  And as I think about me being worried about him crying, I am ashamed of myself!  Really?  Of all things to worry about - that just seems super silly.  He loved running around.  But, his shorts were way too big and he had to keep pulling them up.  My Mom has since fixed them.  Thanks, Mom!

Cooper's the player closest to the coach (Thanks Geoff Gasperini!)

He's the one on the right.

On Sunday morning (the 24th), I ran for the first time in weeks.  While it felt "good" to get out there and be running again, my lungs actually hurt a little.  We ran a little over three miles.  Eventually I'll get my running groove back.  I'm just going to have work a little extra hard for a while.

That Sunday afternoon, Tom and I were interviewed by a reporter for Style Weekly.  He brought a photographer with him, too.  The reason for the interview was about the push for a full service, stand alone, children's hospital here in Richmond.  Remember that meeting that I spoke at and was pretty embarrassed?  Well, he was there and he came and got my contact info.  So, I guess I didn't sound so silly after all.  More on this later.

On Monday, the 25th, we had a snow day - no school.  Ugh.  I'm really over Richmond's fear of the snow.  I get it to some point, but the roads were perfectly fine.  And surprisingly, I think the kids are over snow days, too.  They didn't ask to go outside at all!  Which was fine by me!

What a mean Mom I am.  I made Murphy walk the dog in it.

On Tuesday, the 26th, we sent Harlie back to school for the first time in a couple of weeks.  She wasn't too happy about it, either, which was kinda weird.  Usually she argues a bit, but then seems happy to get on the bus.  I, of course, second guessed myself all day.  She was still on oxygen 24/7, and logistically that's difficult to manage.  She was going through two large tanks in a school day.  Which means I have to take her more tanks since Terri can't carry extra tanks with her.

I am so tired of seeing Harlie sitting on the couch, watching TV.  But, I also don't want to prolong her recovery by sending her to school.  Ugh.  No decision is easy when it comes to her.  And it weighs on me constantly.  I go back and forth in my feelings throughout the day.

On Wednesday (the 27th), Terri couldn't work.  So, I took Harlie to school.  She had a hearing test at another school that day.  So, at around 10am, we got on a bus and went to the other school.  It was when we were getting off the bus that I noticed the gauge on her oxygen tank.  OMG.  I am not a good school nurse!  I totally forgot to switch the tanks out before we left!  And this tank was almost empty!  There was no way it was going to last her till we got back to her school (where a new tank was).  Ugh!  So, I called a neighbor and asked him if he was working from home.  Thankfully he was!  So, I gave him the code to get in our garage and get a new tank.  Then he brought it to me at the school (which thankfully is close to our house).  What a life saver!!!  Thank you so much, Bill!!

I am SO over the stress of this oxygen requirement.  I can't tell you how much energy it takes out of me.  And the logistics of the tanks is a nightmare.  So, I emailed her pulmonologist (again) and asked for a portable oxygen concentrator.  He promptly wrote an order for one and got it to my supply company.  They said that our insurance denied it because it was a "convenience item."  For real???  Wow.  Crazy me!  Wanting oxygen to be convenient!!!  I honestly didn't realize that you should have to work really hard for oxygen.  Seems to me that something you need in order to LIVE should be somewhat convenient.  Especially considering the circumstances - it's for a six year old girl with heart and lung disease so she can attend school.  I guess that's asking too much.  Luckily, she has Medicaid.  Thank you Virginia tax payers!  We are so grateful for VA Medicaid!

Our supply company worked really hard to get it to us as soon as possible.  We were about to go out of town for our first vacation in FIVE years!  Woo Hoo!!  And they got it to us that Friday!  Awesome!  The only negative is that this concentrator only came with one battery.  And on the high flow she was on, it would only last four hours.  The only difference then, was that if we had access to plug it in, it could run off power instead of battery.  I'll take it.  But, that clearly wouldn't work if we needed to fly to Boston.  It's not ours anyway - we are only renting it (standard, I hear).

Murphy got sick again and missed the last two days of school before Spring Break.  He missed more school this year than ever.  Between all three of the kids - this house has practically had a sick kid in it most of the time since Christmas!  Needless to say, I'm more than ready for Spring.

On Saturday, March 30th, we left for Isle of Palms, South Carolina!  It took me all week to pack and get ready.  But it was worth it!  Here are just a few pics...till later.  I'll post more about the week in a dedicated post.  I hope.

Cooper, Harlie and Murphy.

Harlie, Cooper, Murphy, Vivian and Chelsea

Our friends, Mike and Laura (who live in Pittsburgh) rent this house on Isle of Palms and they graciously invited our family to join them!  Vivian and Chelsea are their girls.  We had such a great time!  I really can't wait to write more about it.

And you might just notice that Harlie's not on oxygen in any of those pictures.  She was on it through Saturday.  But after that, she was much better and only required it at night while sleeping.  We were so thankful.  And I think she was, too.

We left on Friday and Mike and Laura followed us home.  They stayed with us for the night and then continued on to Pittsburgh the next day.  Tom's mom came into town on Friday, too.  We had a great weekend.  She got to go to Cooper's second soccer game on Saturday.  And on Sunday we all went to see the movie The Croods.  It was so funny!  We all loved it.

Oh!  I forgot to write that on the Wednesday we were on vacation, the Style Weekly publication came out with the children's hospital debate as the cover story.  I will post pictures of the actual publication soon.  I have more to write about that subject, too (surprise) so I will have to save that for a dedicated post, as well.  I have no idea how I'm going to find the time.  But, I will.

Today is Monday, April 15th and Harlie missed another three days of school last week.  And went back on oxygen full-time.  Luckily over the weekend she perked up again.  So, I got to send her to school today - without oxygen.  That's always a good feeling.

I still have more to write about... but the kids are all home from school now and I have many unfinished projects that need my attention (laundry, the kitchen, the bills, etc.) AND I am cooking dinner tonight.  Yes, you read that right.  I am making dinner tonight.  Murphy and Harlie both have scouts tonight (this will be Harlie's first Daisy meeting in .... months?).  So, tonight will be pushed for time.  So I decided to help by making the easiest thing I could think of - tacos.  And I almost came home without the ground beef.  And that's why I don't cook dinner often.  Or ever, really.

Throughout the last six years, a certain episode of Married, with Children has come to my mind (basically, whenever I do something dumb).  Do you remember that show?  In it, Kelly (the dumb blonde) has to pass 11th grade.  So Bud (her little brother) tutors her.  After working with Kelly for a while, they show Al Bundy (the dad) what Kelly has learned.  He was impressed, and Bud sits next to him and says,

"One slight problem... if you take a gallon of knowledge and pour it into a shot glass size of a brain, you're going to spill some.  In other words, certain basic information had to be sacrificed."

Then the doorbell rings. And Kelly says, "What's that?"  Bud answers, "The doorbell." And Kelly points to Al Bundy and says, "Who's the old guy?" and Bud answers, "That's Dad."

I fully recognize that it's CRAZY that I remember that episode.  Clearly, it spoke to me then and I guess I thought, I'm going to need this later.  I think of it because I often feel like Kelly.  I've had to learn so much medical stuff that I had to get rid of basic information to make room in my brain.

It's silly, I know.  But it makes me chuckle, and sometimes that's what I need to get me through the moment when I feel stupid or inadequate.  Here's the clip.  The part I'm talking about is at the 5 minute mark, if you want to jump to that part.  You know, because you don't have anything better to do.

And as I was finishing this post, the news about the explosions at the finish line of the Boston Marathon broke.  Ugh.  Just awful.  As a runner, this hits a little too close to home.  So sad for everyone.  Thank goodness Boston is such an amazing place.  They were more than ready to handle whatever came their way medically.

Needless to say, dinner was not ready and on the table when Tom got home.  And I almost burned the ground beef.  Twice.

Sorry for such a long delay in posts.  Thank you to those of you still continue to check for new updates.  Love you all!

xoxo,
Christy

My Kidney Stone from Hell

It all started last week.  All the kids had been sick and on Thursday night I started to think I was going to get it, too.  Here's how the week went...

Friday, March 8
I was uncomfortable, but couldn't figure out what was hurting.  It almost felt like I was about to get nauseous.  Or I had to go to the bathroom.  Neither happened, so I just went on about my day.  I did TRX that morning at the gym.  There are a couple of moves where you have to twist your body, and I definitely felt uncomfortable when I did that.  But it wasn't horrible, stop and moan kind of pain.  So, I powered through it.  Then I did all that running around taking Harlie to speech therapy and picking up Cooper and all that stuff.

Saturday, March 9
Friday night was a restless night and I was still uncomfortable Saturday morning, which is why I couldn't run with my friends as scheduled.  However, I tried to do everything else.  And went to a friend's party that afternoon.  By this time, I was probably in more pain than I wanted to admit to myself.  Looking back, I can see that clearly.  I don't have time to go into it now, but there was a mom there who didn't want to get a helmet for her child who has developed a flat head due to sleeping on his back.  It touched a nerve with me, especially since I was already in pain, and short on nerves to begin with.  The thing that always gets me is the "I don't want" thing.  There are PLENTY of things I don't want to do either.  Trust me.  But, I have to.  For the betterment of my daughter.  Once you become a parent, it's not about what you want, it's about what's best for them.  Especially in a medical sense.  Anyway, I tried to keep my mouth shut, but it was really impossible.  Then, I overheard another mom complain that her daughter had to get tubes because she couldn't hear when she had an infection!  Gasp!  Say it isn't so!!  See?  I was awful.  I looked at my friend and said, "I'm hanging on by a thread over here.  Hanging by a thread."  Another mom there had apparently had a rough week and she said, "What more could go wrong?"  Another one of those sayings that I NEVER say - because guess what?  A LOT more could go wrong.  My friend looked at me and then said, "Don't say that."  And then I left.  Thank goodness my friend knows me well and was very understanding and supportive.

Then that night, while I was trying to fall to asleep I felt some sharp pains in my abdomen.  It came in waves and I thought, Great, I have a tumor and I'm going to need a hysterectomy.  Must call OB doc on Monday.  Needless to say, I had a terrible night's sleep and struggled with that pain most of the night.

Sunday, March 10
I woke up and somehow went for a three mile run with my friend Niki, since I missed the run on Saturday.  She met me near my house and it was a hard three miles.  I felt awful.  In fact, I had to walk twice!  Went home, ate and showered.  The pain increased.  And then I peed blood.  I thought, aha!  It's a UTI.  It's a weird UTI, but there are antibiotics, so yippee!  I rushed to the nearest doc and peed in a cup and got some ABs.  Awesome.  Good to go.  Feeling better about things now.

But, the pain increased.  By later on that afternoon, I was in agony.  I was pacing the living room, trying to control my breathing.  I knew then that I did not have a UTI.  The pain was now creeping towards my back on my left side.  Then I remembered something from a few weeks ago...

In February, I had to go to the doc because my back was bothering me.  He took x-rays and suggested I see an orthopedist.  I took my x-rays to my chiropractor.  We talked about what might have been wrong and then he asked me if I had any problems with my kidneys.  I said no and asked why.  He then pointed to a spot on my x-ray and said that looks like a kidney stone to me.

Yep.  That really happened.  And I totally didn't want to believe him.  I've never had one before and I've heard they are a nightmare.

So, as I was pacing my living room, and I could feel all the pain on my left side and back, I knew I had a freaking kidney stone.  I called my friend who's a nurse and asked her what the hospital does for you. In other words, can I do what I need to do at home?  Tom found some pain meds left over from a surgery of his and I took one of those.  That helped and bought me some time.  I really thought I'd be okay.  Then less than two hours later, the meds wore off and I was in even more agony than before.  I knew I would not be able to manage this pain at home.  I was immediately nauseous and could not speak.  The effort of talking made me want to vomit.  It was horrible.

So, my niece Maggie drove me to the ER.  Thank goodness they were not busy and got me right back. They started an IV and got me pain meds (Dilaudid) and anti-nausea meds (Zofran).  They did a CT scan and confirmed my fears.  It was a kidney stone and it was big.  Too big for me to pass without medical intervention.  It measured 7mm x 4mm x 5mm.  I've read that anywhere between 3mm and 5mm need help to be removed.  Awesome.

The doc there said I needed to see a urologist on Monday.  They gave me a script for Percocet.  And we left around midnight.  I was feeling much better and thought I'd be fine with my meds.  But the second we got in the car, I was awful again.  The motion was just too much.  I was in agony the whole way to the pharmacy.  I took my meds the second we picked them up and she dropped me off at home.  I went in the kitchen to get a cup of water and threw up in the sink.

Needless to say, that night was awful.  I took all the meds I could, but they were not touching the pain.  The pain just continued to increase in intensity.  On occasion it would subside for a few minutes and trick me into thinking I was going to be fine.  It was awful.

Thank goodness we know a urologist.  In a running conversation on FB I asked his wife if he could fit me in on Monday and he responded right back.  He told me to call him at 8am.  Awesome!

Monday, March 11
I couldn't move by morning.  I was more than miserable.  I spoke to David at 8am and had an appointment to see him at 8:50.  I was so relieved.  Tom was starting a job that morning, but I couldn't drive with all the pain meds I had taken, so he had to come and get me.  Murphy was home from school, still sick.  And Cooper didn't have school that day, so he was home, too.  Maggie stayed home with them.

We had the appointment and they took x-rays.  David showed me that the kidney stone was all the way at the bottom of the ureter, just before the entrance to the bladder.  He said that usually when the stones are this big, they are found much higher in the ureter because it is so painful.  He said he didn't know how I made it this long.  Considering how weak I was feeling, I really held on to that for the next few days.

He said that he's seen people pass stones this big before, but the chances were slim.  So, he somehow worked miracles and got me in for a lithotripsy procedure that afternoon!  YAY David!!  Seriously!

I told him that the Percocet wasn't cutting it, so he gave me a script for Toradol, Zofran and Dilaudid.  Tom brought me home (I was miserable because I had been in the car).  Plus, there was this weird thing when I lifted my left leg at all. It sent a searing pain in my abdomen.  It was awful.  And when I lifted my left leg to get into Tom's truck, it was like the pain hit me and I saw stars.  The whole way home I had my head over a throw up bag.  It was awful.  He dropped me off and then went to get my meds.  Then I layed down and tried to nap until it was time to go to my next appointment.  My other niece, Jordan was home from VA Tech on spring break, so she came over to drive me to the lithotripsy appointment.

That procedure uses sound waves while you're under anesthesia.  They hit you like 3,000 times in an hour.  I felt like crap waking up.  But, at least I got a good break from feeling pain.  At this point, I had to drink tons of water to try to flush out the broken up pieces.  They said when I left that it broke up a good bit, so I was hopeful.

Tuesday, March 12
However, things continued to get worse.  And even the new meds weren't keeping me comfortable.  Actually, I would have taken discomfort.  This was pure pain.  Serious pain.  I woke up at 2:30am in misery and took my pain meds.  I laid in misery until well after 4am.  Things were crazy in the morning and I had to help with Harlie's hair, and that stuff.  I am the one that gets Harlie ready, so it was a new thing for Tom and it made for painful mornings in that sense, too.

Somehow we got everyone off, except for Murphy, who was still sick.  I sent him upstairs to hang out in my room and watch TV.  Then my friend Sally called and said she was bringing me coffee.  She came over and I really was feeling okay, for the most part.  I had just taken the dog for a walk.  I was uncomfortable, but not in agony, so that was a nice break.  But, just a few minutes after Sally arrived, I went downhill fast.  I couldn't remember what meds I took and when.  I tried to write them down, but I couldn't remember if I actually took the pill or not.  So, Sally helped me count the pills to see how many were missing from my list of what I had taken.

And then I pretty much just fell apart.  I was in agony and couldn't get comfortable.  No matter my position, I had to move from it, constantly searching for a position that didn't hurt so freaking much.  She asked me if I had a heating pad and I told her it was in the bathroom in my room upstairs.  She opened the door and Murphy was laying on my bed.  Clearly, he was surprised to see this stranger in the doorway (he's met her before, but that was months ago).  She said, "Hi, I'm Sally and I'm a friend of your mom's."  And he said, "Can you help me turn on the TV?"  Kids!  

Anyway, she got the rice bag, but it didn't help.  Not long after, I started vomiting so Sally called David and he called in another script.  She went to CVS and picked it up for me, along with some treats for Murphy.  At some point, Sally had to take Murphy's temperature.  It was truly crazy.  Sally was running all around my house trying to do whatever she could to help me.

About that time, my friend Lynda came over to bring me lunch. I took the new meds, but promptly threw it up.  Nothing was staying down.  Which also meant that no pain meds were going to stay down, which was a nightmare!  Sally said it was time to go the ER.  This couldn't last any longer.  So, she called David and told him what was going on.  He called ahead to the ER to give them a heads up and let his partner know to check on me.

Lydna said she would stay with Murphy (Sally and I just left, there was no saying good-bye) and she made him a sandwich and took it upstairs to him.  I can only imagine what this morning looked like from his perspective.  That poor kid.

It was pouring raining about now.  We pull up to the ER and she ran and got me a wheelchair.  Since I was vomiting when we were leaving, they were changing out the bowls I was throwing up in.  In a rush, Lynda grabbed the first bowl she could find which just happened to be the clear, salad spinner bowl.  haha  Can't help but laugh at that.  So, as she was wheeling me into the ER, I was vomiting into a clear bowl - so everyone could see what was going on.  ;-)

Unfortunately, the ER was packed (not that I could see, because my head was down and my eyes were closed).  But, they said there were no rooms and as soon as one opened up, I would get it.  Tom met us there, and got there just a few minutes after we arrived.  David's partner came out into the waiting area to check on me, which I thought was so nice.  But, all I could do was raise my hand a bit - I couldn't speak at all.  Or breathe.  It was awful.  And I am not joking - I wanted to die.  Actually, I thought for sure I was going to pass out from the pain.  Which, would have been awesome.

A nurse brought me out a cold washcloth for me to wipe my face and neck.  And after a little while, Sally said that one of the nurses came out and said this couldn't go on any longer.  She grabbed my chair and brought me into an office and started my IV and got me some pain meds and zofran.  I could then speak - but was still weak, and still in pain, just a little less pain than before.  We waited there until a room opened up.  Then David got there and we went over our plan.

I was being admitted.  They were going to load me up with fluids (since I couldn't keep anything down) and were going to try to keep me comfortable with pain meds and anti-nausea meds.  While the lithotripsy broke up the stone, the pieces were still too big to pass.  So, we were going to have to do surgery in the morning.  He would have to go up through a catheter and use a laser or something to break up the stone pieces into smaller pieces and then remove them.  He would put in a stent to keep my ureter open since it was swollen and irritated.  He said he could do it at 7:30am or his partner could do it sometime later on in the day.  I knew what he was getting at.  So, I said, "Does this mean you're going to see me naked?"  And he said, "Yes."  He said he talked to his wife about it, and she was fine with it (since we all know each other).  The whole situation was just really funny, even in pain, I could recognize that.  But, another minute like this was too much.  So, I said I didn't care.  Just do it.  The sooner the better.

My friend Niki came up to the ER to visit and then Tom went home to get some stuff.  Then my sister came to visit.  Then Sally came back to see me again.  Tom stayed till he had to leave to relieve our nurse.  He was so sweet.  He really didn't want to leave me alone.  But, we had no one who could stay with Harlie for the night, so he had no choice.  My Mom and Dad came after he left and stayed till about 10pm, I think.

The pain was always there.  As was the nausea.  I dreaded the night.

Wednesday, March 13
It was a long night.  The anti-nausea meds didn't work at all.  And any movement could spark a vomiting episode.  So, I tried to lay as still as I could.  I couldn't even check my messages on my phone.  Trying to scroll on my phone, or read the words made me even more nauseous.  It was crazy.  I had a pain pump that I could press every eight minutes.  The problem with that was that I was afraid I would get even farther behind my pain if I fell asleep and went a while without pressing it.  Plus, I was afraid I would over-take the meds if I pressed it all the time.  Ugh.  Was the pain causing my nausea or was the pain meds causing it?  It was hard to tell what was going on and to find the right balance.  My nurses said the pain was causing it and told me to press it whenever I thought about it.  Okie dokie.

I will say that my nurses were great.  They were on the spot with everything I needed.  At 11pm I asked my nurse when I could get the Zofran again and she said, "Not until 2am."  UGH!  Are you kidding me?!  I really thought I would never make it through the night.  But, at exactly 2am, she came into the room and gave me the meds.  I know because I was awake.  As I was the ENTIRE night.  I would close my eyes and then when I opened them, three minutes had passed.  Three minutes!!!  Ugh.  Plus, the Dilaudid was really screwing with my mind and not allowing me to sleep peacefully.  I would think someone was in the room, when no one was.  Or I would see weird images - almost like a dream. Except I was awake.  I got up to pee, and threw up in the trash can.  It was lovely.  I was an absolute mess.  I felt just horrible in every way.  I thought, this has to be rock bottom.

Oh, I shouldn't have thought that.  That definitely came to back to bite me, but more on that in a while...

Anyway, 6am finally arrived and so did Sally.  She stayed with me until they took me back into the OR waiting area.  Tom couldn't get there until the kids were off to school (although Murphy was still sick). As the last docs and nurses were talking to me before taking me back, I couldn't stand the sound of my voice any longer!  I sounded so whiny and weak!  It was awful!  But talking was so hard and required so much effort!  And the effort made me want to vomit.  So, I couldn't stop talking like that.

I don't remember going to sleep.  But, as you usually feel when waking up from anesthesia, I felt like crap.  I can't tell you how many times I thought of Harlie during this whole ordeal and how many times she has had to deal with this kind of thing - but without the understanding that I have.  Breaks my heart.   Like, when some of the IV meds burn when going in.  Or are cold when going in.  Or when bright lights come on and you have to get stuck because they need a blood draw that can't come from the IV (that happened before surgery).  And waking up from anesthesia - how many times has she done that???  Ugh.

Anyway, he put a stent in, which was uncomfortable.  So, while I was better, I was not pain-free.  But, the pain and discomfort was manageable and at least there was a major decrease in nausea.  He said the surgery went fine.  He sent the stone fragments off to be analyzed.  So, he took a picture of it so we could see.  Here it is...

I had to take a picture with my cell of the photo he gave me.  So, it's a little fuzzy.  But, as you can see, my left kidney was pretty much blocked close to 100%, so it was completely backed up.  And the piece that you see was just one fragment of the whole stone.  Crazy.

They discharged me sometime around noon, with some extra meds, too.  He added an antibiotic and Piridium for spasms.  Tom brought me home and stayed with me the rest of the day.  I took a nap.  I know I am so sleep deprived because I haven't had a decent night's sleep since Thursday or Friday.

Also, that day, of course, Cooper had a fever at school, so he had to come home, too.  Awesome.

Thursday, March 14
Since my pain was much more in control, I got up to help Tom get Harlie ready.  It was picture day at her school.  But, she was a mess now, too.  After we got her dressed, I realized she had a fever, too.  Holy cow.  When is this going to end?!  So, we called her bus driver and told her not to come.

Cooper stayed home, too.  He had a rough night last night and was up several times, and was super hot.  Poor kid.

Murphy finally went to school today for the first time in a week.  Tom is sick now, too.  Although in order for him to get some rest, he had to go to work.

I now have a horrible cough.  I think it's official - my house is a MESS.

Harlie had a doctor's appointment today to get the word on whether she could wear her BAHA again.  Terri took her for me (my niece drove them) and all went well.  Harlie is now sporting her BAHA with NO soft headband!  Woohoo!  That's so exciting!

Some friends came to visit me this morning.  Allison and Kathleen came by and brought dinner from another friend of ours and some cake.  And they took Rooney for a walk.  That was so helpful!  I was definitely not up for walking him today, that's for sure.  And it is always so rejuvenating to see friends and know how much you're loved when you're going through a hard time.

By early afternoon, Cooper was vomiting.  Great.  But after more Tylenol and some down time, he was up jumping on the couch by night.  He is something.  But, since he had a fever today, he will not be going to school tomorrow, either.  Same with Harlie.

After that, my Mom came by to come and get me and take me to my appointment to have the stent removed.  That was very quick and easy, which was great.  It definitely felt weird, but it didn't exactly hurt, either.  The nurse said I might still feel uncomfortable for the next 24 hours or so.  But, so far it has been completely manageable and it is such a huge improvement from how I felt just a day ago!  How could I complain?!

Friday, March 15
I knew I felt horrible the second I opened my eyes.  Since Harlie and Cooper were both staying home from school, I slept in and Tom got Murphy up and ready for school.  I stayed in bed for hours.  My friend Bethany came to walk the dog for me.  Oh, I can't begin to tell you how thankful I am for all the help we have received!  Tom called and said he was coming home sick.  He felt horrible.  I finally forced myself to get up at noon.  But that was only so we could go to the doctor.  I felt pretty positive that we had the flu.

Yes, the flu.  I haven't had the flu in ages.  In fact, I cannot recall the last time I had it.  But, I knew this was no ordinary sickness.  Every part of my body ached.  I felt like I had been hit by a truck.  And I had not even had a moment to catch my breath from the kidney stone!!!  What gives???

Tom and I went to the doctor and took Cooper with us.  We were a pitiful sight.  We tested negative for the flu.  But the doctor said that he thought we had it anyway.  I'm not totally sure how that works, but whatever.  He said he bet Cooper has it, too.  So, he gave us a script for Tamiflu and then I called the pediatrician and he called in some Tamiflu for Cooper and Harlie.

I'm thinking that Murphy had the flu last week.  He was out for more than a week.  I guess they assumed he had the stomach bug or something when I took him to the doctor last weekend since he had vomited.  But he definitely did not have the stomach bug.  And he's still not back to 100%.  He most likely gave it to all of us.  Cooper has had a fever off and on since Tuesday.  Harlie had a fever on Thursday (and she rarely gets a fever).

Friday night was horrible.  Harlie spent most of the night coughing secretions she could not clear herself.  So, that meant we were up, taking turns, suctioning her.  Oh, how I long for a good night's sleep!!!

Saturday, March 16
I woke up feeling a tad bit better.  And Tom was definitely worse.  So, I got up and handled the morning stuff and let Tom stay in bed.  Brandy came over to help.  Since Harlie's sats were so low (when not on oxygen they were in the low 70s) I felt like the oxygen without humidification would just be asking for more trouble.  So, we carted down the whole IV pole and trach humidification system and put it next to the couch.

Don't you love my photography skills?

A throw-up bowl is never far away.

Our friend Michelle brought coffee for Tom and Happy Meals for the boys.  And she got Harlie the girl toy from a Happy Meal since she knew she doesn't eat.  Can you believe that?  That was so, so thoughtful!!!  And as if that wasn't enough, she walked the dog for us!

We all settled on the couch and watched The Sound of Music together.  I sat next to Harlie and literally suctioned every few minutes.  As the day wore on, I felt worse.  I started dreading the night again.  I felt really, really tired.  Like more tired than I have ever felt before.  The kind of tired that made me afraid that I was going to make a mistake taking care of Harlie during the night.  What if I missed a sign that things were getting worse?  What if we slept through something?  I just didn't feel confident in myself and my ability to make good decisions for her.

These are the moments that make me sad.  She is not in the clear.  She is not a healthy child.  And her bouncing back from a sickness is no guarantee.  What if this is the sickness that takes us down the road we don't want to go down?  What if this one is just too much for her heart?  She's been on oxygen for all but three weeks of 2013.  Is her body getting tired?

So, I tried to find a nurse to help us for the night.  Jennifer, who used to be one of Harlie's nurses, was out of town.  But, I messaged her and asked her to message her nursing friends to ask them.  I offered to pay them directly.  But, unfortunately, no one could do it.  Tom was feeling pretty sorry for me.  So, he said he would take Harlie duty for the night.

Thank goodness it wasn't that bad of a night, all things considered.  Even though when we took her upstairs to go to bed, she had to come off the oxygen for a few minutes (like three).  And when I checked her upstairs her sats were 67!!!  That's just too, too low!  What in the world is wrong with her?  Well, I guess the flu.  Which we've managed to avoid her whole life up until now.  Which is kind of amazing, isn't it?  Well, I don't know.  She gets the flu shot each year.

Anyway, it is now Sunday afternoon.  And I have to get off this computer.  I am hoping from here on out we'll all be on the up and up.  I think it's safe to say that we are due.

But, before I go, I just wanted to send out a heartfelt thank you to everyone who made our life better in the past two weeks...  Thank you David, Sally, Lynda, Niki, Bethany, Michelle, Allison, Kathleen, Glen, Dana, Cami, Mike, Maggie, Jordan, Terri, Brandy, my Mom, Dad and sister, Sandy and to everyone who sent us messages, cards, called, etc.  Also, thank you to those who contributed to our wonderful gift of two professional house cleanings!!  Yes, many of our friends contributed towards house cleanings and our first one is Friday!  I can't wait!

I know I've said it before, but with our luck not being the best, we are so very lucky and blessed to have such a wonderful supportive group of friends and community.  We truly couldn't live this life without it!  Thank you, from the bottom of our hearts!

Much love,
Christy xo

ER visit

Thursday

Harlie seemed totally fine (well, except for that little pesky O2 requirement), so off to school she went.  Seriously, I was thinking any minute now, she's not going to need it.  

After everyone was where they were supposed to be, I went to my Adrenaline class.  It was great.  Then I came home and sent some e-mails.  I e-mailed Harlie's pulmonologist.  I just wanted to let him know what was going on and get his opinion.  I really couldn't quite understand his response, to be honest.  I really like her pulm, he's great and very personable.  And when we see him in the clinic, he always explains things in a way that I can understand.  However, this is just one sentence from his response...

There could also be more shunting going on with blood bypassing the lung across her cardiac defect from more resistance to blood flow through the lungs by the edema.  

Got it?  

However, this I understood easily...

Lastly, she has almost half the lung reserve that she needs and the illness (and healing) will create more oxygen demand particularly with any exercise.

Because he mentioned "shunting" and "heart defect", I went on ahead and sent an e-mail to her local cardiologist (just to be on the safe side).  He mentioned pleural effusions asked if she's had a chest x-ray.  Um, no.  We were really trying to avoid that.  But, maybe we should consider that.  Tomorrow, of course.  

At some point during the day Terri sent me a text to tell me that she was up to two liters on her tank, to keep her sats in the 80s.  That's kinda high.  For Harlie, at least.  Especially on day three of ABs (antibiotics).  Hmmm...

When they got home from school Terri told me that the tank at school was pretty much empty.  

It was after 2pm now.  Considering she will most likely need more tanks for school on Friday, I needed to get on that and fast.  So, I immediately called our supply company and asked about getting more tanks.  This was a nightmare, but let me try to make it more simple for you...

We had one "E" tank - which is a larger tank that goes in a rolling cart (which was empty and still at school).  

We also had two "D" tanks - which are smaller tanks that go in a shoulder strap bag thing (one was almost empty and one was full).  

The E tank was staying at school and Terri was using the D tank to get her to and from school.  That way she didn't have to carry the bigger tank on the bus.  

Apparently, on two liters of O2, the E tank will last four hours, and the D tank will last two hours.  

So, we didn't have enough tanks to get us through the next day (Friday).  

The girl at the supply company told me they would only switch tanks out.  Meaning we had to give them an empty tank when they gave us a new tank.  But the empty one was at school.  So, logistically, how do I make that work?  

Well, I hate the small details of logistics.  So, right there my brain wanted to stop working.  But, don't most people own two propane tanks for a grill?  So when one goes empty, you switch it out for a new one then you have time to exchange the empty for a new one, right? So, how the heck am I supposed to switch out one E tank?  It seemed to me that I needed at least one more E tank.  

Plus, I needed the E tank that day so I could take it to school on Friday.  

After 45 minutes, and three people later (the second person finally transferred me to a respiratory therapist who was a bit more reasonable and understanding of the situation) I finally got an order for two more E tanks in exchange for one D tank.  That left me with two full E tanks, one empty E tank, and one full D tank.  And they delivered them that afternoon.  

Terri stayed late for me that afternoon because I was on the phone so long.  And during that 45 minutes, Murphy got home from school and wanted to talk to me about his day (which is very rare).  But, there was no way I could talk to him right then.  So, I had to shoo him away to take care of this stuff for Harlie.  Ugh.  Stuff like that just makes me feel terrible.  I know there's no way around it sometimes, but that doesn't make me feel any better.

Friday

Harlie went to school on the bus with Terri with a D tank.  We got Murphy off to school and Tom left a little early that morning.  I got Cooper ready and took him to school at 8:30.  I left there and went to Harlie's school to deliver one of the new E tanks that was delivered the afternoon before.  

I must say that it felt super weird to be carrying in an oxygen tank to school.  When you push the buzzer to get in the school, they now ask how they can help you.  So, I said, "I'm Harlie's mom delivering oxygen."  I'd rather be delivering cookies.  

So, we switched out the E tanks.  And when we opened the new tank - it's not full.  Seriously?  Ugh.  That's when I wonder why I didn't think about the supply company delivering the tanks to school instead of to my house.  Wouldn't that be way easier?

I tell Terri to call me when it starts to get a little low and I will have to come back and pick them up.  Because I just love driving back and forth to her school.  

I left there and went to the gym.  I signed up for the 9:30 TRX class and got the last spot.  On my way there, I called her pediatrician.  I asked if her current ABs treat pleural effusions.  She said she'd call me back.  

Just as the class was starting, my phone rings.  The nurse said that her doc wants her to have chest x-rays.  I can't believe my denial, but I actually asked if I needed to do it now or if I could wait till after school.  She paused and fumbled over her words a bit (probably because she was shocked that I would ask such a ridiculous question).  I said, "Never mind, of course I should take her now."  And hung up.  

Then I went and did the TRX class.  It was hard - not just the work of the class (because TRX is really hard) but my head wasn't all together for a little while.  But, I felt a lot better after.  Then I ran a quick mile on the treadmill and I felt much better.  

Then I went home to eat breakfast and shower.  Because I'm sorry, but I am NOT going to the hospital looking all a shambles in my work out clothes.  No way.  I can't help but think if I look somewhat put together, then I will be taken more seriously.  

I also called our supply company.  For one, I wanted to ask them about getting a portable oxygen concentrator so we wouldn't have to worry about tanks.  Because they are proving to be a royal PIA.  I got a "no."  But, if this turns out to be a chronic problem, I'll work on that.  I also asked her about delivering to school.  She said they don't like to do that because they are afraid they (the tanks) will get lost.  Seems like an easy problem to overcome considering Harlie is the only child in the school with oxygen tanks.  But, that will have to be a fight for another day.  I got other things to deal with right now.  So, then I ask about delivering tanks during the weekend.  She answered, "Only if it's an emergency."  I replied, "but... it's oxygen."  

Am I missing something?  Isn't needing oxygen, kind of important?  Whatever.  Moving on... I ordered more tanks and asked that they be delivered as late as possible in the day.  Because I didn't know when I'd be home.  But, I did think ahead a bit, and brought in the empty tank that I picked up from school earlier in the morning.  

Unfortunately, it's now close to noon.  My, how times flies!  

I realize that I don't know where to take her for the x-rays.  I mean, I know where it is, but I don't know if her doc has to call ahead and order it.  I can't just walk in there and ask for an x-ray.  So, I called her doc again.  I get the receptionist who tells me that they are all busy and they are going to have to call me back.  I can tell she doesn't know how I am or why I'm calling.  And they close the office at noon for their lunch hour.  So, I really need to talk to someone before noon.  

I wait till just a few minutes before, and call again.  Her doc gets on the phone and tells me to go to the ER.  

Well, now I have to feed and walk the dog.  

Then it dawned on me that I have to have the boys taken care of because I have no idea how long I'm going to be gone.  So, I had to make some phone calls.  Of course my friend Bethany (who's got my back - thank you very much!) comes to my rescue and picks up Cooper and keeps him for the day.  I was going to ease her burden by sending Murphy to another neighbor.  But I couldn't reach her.  So, I had to call Bethany again, and ask her if Murphy could ride his bike to her house after school.  Of course!  So, I had to send an e-mail to his teacher asking her to tell Murphy to go to her house instead of coming home.  

I also called my niece Maggie, who said she could come over around 3pm to relieve Bethany of the boys.  Maggie said she could stay until 5pm (then she had to go to work).  Then Tom would come home.  My mom has the flu, otherwise I would have just had her come over.  

Okay, so I got home from the gym at 10:45.  By the time I did all that stuff, it was a little after 1pm.  Now I realize that I have to pick up Harlie and Terri, and then bring Terri back to my house because she needs to get her car.  There's no way she can go to the hospital with me.  Who knows how long I'd be?  

So, I finally got to the ER at 2pm.  OMG.  I had no idea it was going to take that long to do all that stuff.  

The ER is packed and with Harlie's chair and all her stuff, we were kind of a wide load.  There was no seating for the both of us.  So, I stood up most of the time.  I can't remember how long we had to wait, but it was a good long while.  I've never had to wait at the ER with her.  Ever.  And I had to ask them for an O2 tank, because there was no way my small D tank was going to last us through all this waiting, and then to get us back home.  

I got to see a friendly, familiar face - a nurse that we met through the Steelers club.  We've seen her many times in the ER.  So, that was nice.  

Once we got back into a room, things went pretty quickly, all things considered.  We saw two doctors that have both seen Harlie before.  Went over everything and got chest x-rays.  

She was very playful (and didn't look very sick).  

But then a nurse came in to start an IV (they wanted some blood work and wanted a line for IV ABs, if necessary).  Harlie immediately started to cry.  Break. My. Heart.  I tried to prepare the nurse for the fight Harlie was going to put up.  I told her that nothing I do or say helps Harlie.  I sat down on the bed and put Harlie in my lap.  Then I bear hugged her the best I could.  I should have told the nurse to get some help.  But, I just wasn't thinking, I guess.  

Thank God this lady knew what she was doing.  She got it on the first try!  And that's saying something when you factor in how much Harlie fights and moves.  But, once she got it in, Harlie still wouldn't stop moving.  And by now we are laying in a very awkward, uncomfortable position.  Harlie is purple from all the crying and fighting, her oxygen tubing came disconnected, the alarms are buzzing and her sats are in the tank.  The nurse doesn't want to loose this IV, so she calls for help.

Whew!  After a few more minutes, they were done, and we could leave her alone for a bit.  She was wiped out after that!  

Then the doc came in to tell me that her x-rays showed some pneumonia and/or atelectasis (collapsed lung) on the right side.  They want her to stay on the ABs she's already on, but they want to add a med.  They said the med can be hard to find, so they were going to give her first dose while we were there, through her IV.  

They started that at 7pm and said it takes an hour to run.  Thank goodness I remembered to throw some granola bars and an apple in my bag!  The last time I ate was breakfast.  So, I was hungry.  

I was also really, really tired.  And even though I've done it so many times before, the thought of packing her up, carrying all the bags and stuff and getting her to the car, and home, made me exhausted.  It felt like the car was miles away.  

So, I called my sister, Sandy.  I knew my niece, Jordan, was still home from college, so I was hoping they could help me.  I felt so wimpy asking for such a crazy thing.  But I really couldn't help it.  

I asked her if there was any way they could work out going to my house, leaving someone there to watch the boys and then have someone bring Tom to the hospital, so he could drive us home.  

How awesome is it that they were Johnny on the spot?  Sandy and Jordan were already together and out.  So they left there and drove straight to my house.  Sandy called her husband, Rick, and asked him to leave their house and drive to my house.  Jordan stayed  with the boys and Sandy and Rick drove Tom to MCV.  He got there right as we were getting the paperwork done for discharge.  

Awesome!  Thank you so much Sandy, Jordan and Rick!!!  

We left the hospital and went to the 24-hour CVS to get her prescription filled.  No luck.  They were out of it.  They called another pharmacy (the one that usually has everything but isn't so conveniently located) and they were out, too.  Tom called another one, still no luck.  They could order it, but it wouldn't get here until Monday.  So, we went home.  

I guess we got home close to 10pm.  Tom called the ER doc and told her about the meds.  She said she'd do some research and get back to us.  

We went to bed.  And the doc called us back Saturday morning.  

But, I'm going to have to stop there.  I still have more I want to tell you about, but it is super late and I'm running in the morning.  So, I need to get to sleep. 

More soon!
Thanks,
Christy xo