Long Update. No school. Quick ER stint.

I started this post on November 25th...

I don't even know where to begin since it's been so long since I've last written.  Harlie is fine.  She's happy.  The bruising is all gone.  She is still drooling.  Some days are better than others.  She is finally getting the two front teeth that she's been missing for forever!  I think she lost them during her spinal fusion surgery back in March of 2011.  I'm anxious to see how her smile and face will look with her "new" jaw and with all of her teeth.

I really need to work on finding pictures of her after all of her jaw surgeries.  It would be interesting to see how her face has changed through the years.  But our photo storage is a mess and would take me hours and hours to go through them.  So, I don't see that happening any time soon.

Things are crazy as usual.  But, Harlie is finally free from antibiotics since practically July!  It was a weird adjustment not giving her any extra meds.  I am glad to have that all behind us now.

We have a date for her heart cath - December 13th.  She will have a pre-op appointment with her pediatrician earlier that week, and will have to have some blood work done.  I think they will keep her overnight after the cath.  It is in DC.  Clearly, I'm hoping that it will go well and that we'll finally get some answers regarding this oxygen requirement.

I am more over this than I can possibly put into words...

I find it very stressful to need the oxygen all the time.  It's also tiring.  And it's tiring to be stressed. The other morning, I switched the regulator from the tank we used the prior day and put it on a new tank.  But air leaked.  So, I tried again.  Still leaked.  So I went in the house and got a new tank and tried again.  Still leaked.  So, it wasn't the tank, it was the regulator.  But, it worked just fine yesterday!  So then I had to go back in the house and get another regulator (which I just happened to order the prior week, just in case).  Now, what if that happened when we were at school?  She wouldn't have been able to get oxygen until I brought her a new regulator.  And what if I wasn't at home?  So, now we have to carry around an extra regulator.  And it's those experiences and "what if" thoughts that makes this so freaking difficult.

And the worst part of it is that all the work we've put into giving her a better airway, is almost for nothing as long as she's on oxygen.  She can't be capped.  And she can't have a sleep study.  And she certainly can't be decannulated (get the trach out) on oxygen.

And, most importantly, I hope this need for oxygen isn't a sign of a larger problem with her heart or her lungs, or both.  December 13th can't get here fast enough.

It seems I am not done wishing time away.  It is not the way I want to live.  I want to stop and enjoy.  I want to provide her with better, age appropriate experiences.  Like this one...

Maybe 2014 will be our year of less medical, and more joy.  Wouldn't that be something? Because I gotta tell you, 2013 pretty much sucked.  We are ready for uneventful, boring and steady.  In other words, joy.  When I close my eyes, I can see it.  Funny, though.  It's always been that way.  I've been thinking that was right around the corner for years.  That's hope for you.  It gets you through, even when it doesn't turn out the way you wanted.  Then after the disappointment, hope returns for something else.  That hope is a funny thing.

So, now that the heart cath is just three weeks away, I am worried about her getting sick.  And she is today.  She has been home from school for two days and I will keep her home again tomorrow.  At this point, I think I am ready to throw in the towel on this school thing.

On Monday, I didn't have a nurse for the first half of the day.  So, I took her to school.  It's a lot of work getting her to school.  It takes all of my time from 6:30am to 8:30am.  So, Tom handles the boys and I handle Harlie, with the help of a nurse.  It's quite ridiculous.

Anyway, as I was getting her out of the car to go into school after 8am on Monday, I noticed how insane the whole process was.  And how incredibly drained I felt.  I just don't think I can do this anymore.  And if I feel this way, then how does Harlie feel?  After all, she's the one who needs the oxygen.  And she has to work so hard for everything.  And after a really rough year, isn't she exhausted, too?  Is she really able to put all her energy into learning if she's using so much just to be there?

So, I wrote out the pros and cons to putting her on home bound services until January.  The only real con is that she won't be in school - with her peers.  But, when she's at school, she's working.  Not playing.  And to be honest, she doesn't play with her peers.  At all.  For whatever reason - she doesn't interact with them, despite their many efforts.  And it breaks my heart.  Either she's just not ready, or she knows she can't communicate with them, so why bother?  Or she just doesn't have the energy.  I can say for certain that I don't have the energy myself to play with my friends as much as I want to.  Now throw in a major communication obstacle and I guess her actions are understandable.  She interacts just fine with her brothers at home.

~~~~~~~~~~~~

November 29

It is now the day after Thanksgiving and I have officially made the decision to keep her home from school from now until January.  I've told her school and all the necessary parties to make it so.  And despite all the thought I've put into it, it still doesn't feel good.  It just goes against everything to purposely keep your child OUT of school.  And it makes me sad, too.  Is accepting the same as giving up?  Maybe not.  But it feels like it is.

Just in case there's any confusion, home bound isn't the same as home schooling.  With home bound, her teacher from her school comes to the house to teach her for one hour.  For one, she needs a teacher specialized in hearing impaired learning.  There aren't many.  So, her teacher who teaches her at school comes after the school day to teach Harlie.  The formula for home bound is one hour for each school day missed.  Of course, this is for a typical student and is to cover general education.  I have to wonder where her IEP (individualized educational plan) comes in since it includes gen ed AND hearing impaired time each day along with one hour of speech therapy per week.  So, I'm hoping they will add some services to her home bound schedule.  I want to do what's right for her health-wise, but I hate to have to sacrifice educationally at the same time.  I'm hoping they don't want that either.  So, we'll see.

Since she requires so much specialty education - there is no way I would EVER consider homeschooling her.  I've had to learn a lot to take good care of her.  I'm sorry but there is no way I could do her justice in the educational department, too.  I am only human after all.  Her teacher mentioned that she wants to start to use a reading book that is meant for English as a second language students - I would never have thought of that.  That just proves that the more brains that come together for Harlie's education, the better.

I feel really bad about not blogging in so long.  And I feel especially bad about not posting some thoughtful, thankful post about Thanksgiving.  I am thankful every day of the year.  Most of the time.  But, right now, I just don't want to talk about how thankful I am.

To be honest, I'm having a rough time.  This year has been so hard in so many ways.  And it has taken a toll on me.  We were supposed to go to Tom's mom's house in Pittsburgh for Thanksgiving this year.  But, we just couldn't.  On top of Harlie having a cold (I'm guessing) we've had to travel so much lately and it has worn me out.  I just couldn't bear to think of packing all her stuff up again.  Every time I pack her stuff, that means it has to be unpacked, then repacked, then unpacked again.

And there's a level of stress that goes with packing her stuff.  If something breaks, I won't be able to run out to CVS and buy another one.  So, I have to pack more than I'll probably use.  And what if I forget something?  I usually think about that for hours after we've left.  Even with this list I've prepared, I still manage to screw something up:

It doesn't help that I STILL have this stupid piriformis syndrome.  It is commonly known as a "pain in the ass."  The piriformis is under your glutes (your butt) and it squeezes on the sciatica.  When it first started it felt like it was a cramp that I couldn't relax.  Then it started pressing on my sciatica.  It's awful.  And the funniest part is that sitting is one of the worst things you can do!  Now isn't that something?  As freaking worn out as I am, sitting causes the most pain.  Someone has one hell of a sense of humor, huh?  It doesn't necessarily hurt while you're sitting (although sometimes it does) but I will pay for it the next day(s).  We went camping a few weekends ago and it was a three hour drive each way.  It knocked my recovery back a couple of weeks at least.  And I was in a lot of pain for several days afterwards.

Anyway, I'm doing these exercises several times a day to try make things better and I'm seeing Rob Green at Active Chiropractic regularly for active release therapy and e-stim.  I'm making progress, it's just taking a long time.  And I've always felt that when I feel strong physically, I am stronger mentally.  So, now that it's been since July since I've really been able to do anything physically, I'm feeling pretty weak mentally.  Running was a huge stress reliever for me, and it's been gone now for FIVE horrible months!  It's killing me.  Blogging is another stress reliever, and well, you can see how often I've been able to do that!

So, in summary, I'm worn out.  I'm beat.  I just don't have it in me to do things that I used to do.  A perfect example - today Tom and the boys went to get our Christmas tree.  Harlie and I both really wanted to go.  But, she still has a cold and is very junky and the thought of packing her up was just too much.  So, Tom took the boys to get our tree, and Harlie and I stayed home.  I would have worked to make this happen before.  But not today.

~~~~~~~~~~
December 5th!

UGH!  It is now Thursday, December 5th!  I have been trying to finish this post for weeks!

On Tuesday, I woke up to find another abscess in Harlie's jaw incision.  My heart sank.  Of course all I could think about is what we had to go through for the last one.  So, we packed her up, I packed an overnight bag for myself, cancelled all appointments for the day, got coverage for the boys for after school and took her to the emergency department at VCU.  We got there at 9:30am.

How many photos do you think I have of Harlie
in a hospital bed?  Hundreds I'm guessing.

When the nurses came in with the IV kit, Harlie grabbed her arm (in a protective way) and cried, "No!"  We tried so hard to talk to her about being brave and still and how it would be over quicker with less pain, but she's just not ready for all that nonsense yet.  I will say that she seemed to try.  But, she's just not there.  One day... and then I think, when she gets there, will I be happy or sad? I guess a little of both.

They paged the plastic surgeon who took care of her last time (in August).  A few residents came to check her out and then the surgeon came down.  She said it was definitely smaller and less serious looking than the last one.  Since there's no hardware in there to save anymore, she thought she could just open/drain it right there in the ED to avoid having to take her to the OR.

At first I was nervous.  They've tried various drugs to help her calm down for things like an IV stick or echo (which is ridiculous - but that's how stressed she is when she's in the hospital) and it's never worked.  Her anxiety just doesn't stop.  So, I told them that, thinking they shouldn't even try.  But then they asked if they had ever given her Ketamine for that.  Well, I can't remember that!  I'm pretty sure they've given her Ketamine before, but as for at the bed for a procedure, I don't know.

And in that moment, when I have several doctors looking at me to tell them if I'm comfortable with doing it - I feel so freaking overwhelmed by her medical shit that I want to scream. There's so much I just can't remember anymore.  I should have started my own database when she was born.  As if I had time for that.

Anyway, I asked for a moment so I could think it over.  I hear all the time that I'm a good advocate for Harlie.  But, in these moments, I don't agree.  It's hard not to feel pressure from doctors.  And it's hard to know if the uneasy queasy feeling in your stomach is mommy gut or if it's just stress from being thrown into a crummy situation with no time to prepare.

In the end, I decided to let them try.  A doctor came and explained Ketamine to me in detail.  And I thought that it was worth the effort to try to avoid the OR and overnight stay.

Luckily, it worked.  It seemed superficial and was so small that she could barely put any packing material in it.  The packing material is purple and if it turns white then that means it's come into contact with bacteria. Her white blood count (WBC) was only 10,000, which is normal.  It gets elevated when the body is fighting an infection.  I'm really hoping that means that maybe her body was just trying to get rid of a stitch that didn't dissolve or something vs. an actual infection.

She was "awake" for the procedure.  Well, not really.  Her eyes were open, but she was elsewhere.  It was kinda freaky to see her eyes open the whole time.  After it was over, she gagged for about 15 minutes (he told me that gagging happens in about 20% of the cases).  Then she slept.  And she slept HARD.  Her nurse was getting a little nervous at her low heart rate.  But, that's the way Harlie's heart works when she's sleeping.  That's why she has a pacemaker.  It kicks in and makes her heart beat if her rate gets below 50.

As a precaution, they put her back on those freaking antibiotics (Clindamycin) for another 10 days.  They had her recover there for over an hour, then we got to go home.  It was close to 9pm I think when we left.  It was a long, hard day.  But, better than what I was expecting when we left that morning.  All during the waiting of the day, my lower back was so stiff I could barely move.  When I left and got home, it was way better.  It's clear to me that my body is having a hard time with stress.

Now I just have to hope like hell that this doesn't mess up her scheduled heart cath.  I've kept her out of school to keep her healthy and then this happens.  The problem is that is such a bad spot for a wound to heal!  Between her drooling, coughing secretions and the trach collar rubbing on her jaw, it's close to impossible to keep that wound clean!

Today is Thursday and we had to remove the packing and take a look at it.  The purple packing was white.  But she's colonized with pseudomonas, so that isn't surprising.  We put a little more packing stuff in there and taped it up.  We'll take a look again on Saturday.  They sent off some to culture, so hopefully when that comes back we'll know more.

At this point, I've been in touch with CNMC and they are willing to wait and see how she does before making us reschedule entirely.  My fingers are crossed that the culture comes back with nothing.  That's what actually happened in August.  They treated her so aggressively last time to save the hardware.  But, it is possible to have a sterile abscess.  So, that's what I'm hoping for.  I want this heart cath behind us.  I want to know what the heck is going on in her body that's making her need this oxygen!

I am ending this post here and now.  It is way too long and covers way too much ground.  And if you feel stressed after reading this, I'm sorry.  Truly.  I really want to be positive.  But, it's difficult right now.  And it's Christmas.  The little energy I have must go to the kids.  You know when your kids are really excited about something and you have to be excited right back?  Yeah, well, I'm running very low on that kind of energy right now.  I'll figure this out.  We'll all persevere.  I know it.  And I'll get better and will get back to my old ways and all will be good again.  No worries.

Much love,
Christy xo

Pre-Op Day

What a long day.

We are beat.  I think Harlie fared better than we did.

Our first appointment was in Pre-Op/Admitting at 10 o'clock.  They did the basics - weight, height, temp and blood pressure.  Then we spoke to a nurse at length about Harlie's history, current status, etc.  After that, we spoke with an anesthesiologist.  She asked why we didn't do a heart cath first.  She was a little concerned about her cardiac situation.  But I explained that it doesn't work that way.  We don't have a choice.  The hardware has to come out first.  And we are here and Harlie is healthy.  I don't know what's going on with her heart and lungs - but she is NOT sick.  So, she sent us on to our next stop - admitting.  Tom handled that one while I sat with Harlie.

It was noon by this point and we had an hour till our next appointment - cardiology.  So, we went down to the cafeteria and got some lunch.  There we ran into Julie, a nurse we used to have when we were at Children's National in DC.  I saw her when we were here this summer, too.  She moved to Boston and now works here.  It really is a small world!  Anyway, it was so good to see her friendly face!

After lunch, we headed up to cardiology.  There she got an EKG, a pacemaker check and we met with her cardiologist who had us this summer.  I find him to be very easy to talk to and compassionate about her and all we have on our plate.  I brought him up to speed on what's been going on with her.

Unfortunately, the conversation wasn't great.  We won't know anything for sure until she gets this darn heart cath.  But, his thinking is that it is not likely to be a simple thing as a collateral vessel(s).  He explained why and it makes sense.  It also is in line with what her local cardiologist has said for years.  Which means that her heart may not be the cause of the oxygen requirement. That will send us back to pulmonary, which means we have to go back to the beginning.  That's where I started my questions last year.  And we never got answers.  She is just so complicated.  Her heart function - the Fontan, is less than ideal, in a kid with normal lung function.  Add her less than ideal lung function to the less than ideal Fontan function and what do you get?  Plus, he said that she could be micro aspirating, which, over time could cause lung damage.  So far, we've never seen any evidence of aspiration, but what the hell?  I suppose she could be.  Nothing about her makes sense, so why not?  But, we've done x-rays, a CT scan of her lungs in June and we are now doing Vest treatments.  I really don't know what else we can do.  Except leave Richmond for pulmonary.  Which I do NOT want to do.  But, I will, if I have to do.

But, I'm probably getting ahead of myself.  We have to take one thing at a time.  But, for now, Tom and I are feeling very heavy.  I don't want this to be a sign of something horrible.  But, the oxygen requirement for almost a full year, the struggle her body had with surgery in July, and then again in August, the addition of Lasix to her daily routine, and then an increase of Lasix every other day, means that we are going in the wrong direction.  Things are getting worse.  And there's nothing I can do to stop it.  I don't understand what's going on, and neither do her doctors.  There's absolutely no comfort in that.  And we have to wait at least SIX weeks for her heart cath!  How am I going to live with this worry for six weeks?

After that appointment, we headed over to Plastics to see her plastic surgeon, Dr. Padwa.  We didn't know how to get there from where we were.  I know how to get to Dr. Padwa's office, but I have to start from a certain place.  Anyway, we bickered about being lost, where to go, etc.  And it was very obvious that we were feeling very tired, and sad, and worried and that's just the way all that stuff comes out - being crappy to each other because there's no one else to do it to.  Luckily, we are not new at this, and we realize what's happening.  So we stop it somehow.

We went to Dr. Padwa's office and met with her.  That went well.  No heavy conversation there.  She thinks Harlie looks great.  And things are so much more improved than when we saw her last.  Harlie is swallowing and her mouth closure is much better.  They got some mouth x-rays and some pictures.  That sounds easy, but it wasn't.  Keep in mind it was well after 3 o'clock by then and we were all so tired.  And trying to get Harlie to look at us and hold still, etc. was a lot of work.  And I can't even say we were successful.  I don't know, maybe.  They said she did well, but all I can tell you is that I was done.  Then we went back towards cardiology to get chest x-rays.  We would have done it while we were right there (they are next to each other) but, we didn't have time.

Here's what she looks like underneath it all...

You can clearly see the hardware in her jaw that will be coming out on Wednesday.  Isn't it crazy?  Oh, my poor sweet little girl.  There is so much going on in her little body.  It makes me so sad sometimes.

Here is a side view...

After that we were DONE.  Luckily, her cardiologist didn't make her get another echo.  And come 4 o'clock (it's scheduled time) I was so, so thankful.  There is NO way she would have been cooperative for that.  And Tom and I did NOT have the energy to help her through it.

We left the hospital after 5 o'clock.  We walked those halls for seven hours, pushing her, and pulling her oxygen, both of us connected by tubing.  Weaving through the halls, and waiting rooms, going into restrooms and exam rooms with that oxygen in tow is exhausting.  I hate to sound like a wuss, but that oxygen changes everything.  And I'd like to think I'm somewhat physically fit and energetic.  Yet, it kicks my ass.

But, in those seven hours, we really never had to wait.  And if we did, it was for a very short time.  Our day in a nutshell:

1.   Spoke with a pre-op nurse.  Got vitals and discussed meds.
2.   Spoke with a different pre-op nurse. Went over history and discussed meds.
3.   Spoke with a pre-op anesthesiologist.  Went over current issues and discussed meds.
4.   Admitting, gave insurance info.  That was easy.
5.   Had lunch
6.   Got an EKG, completed paperwork about her meds.
7.   Got a pacemaker check
8.   Met with her cardiologist
9.   Met with her plastic surgeon
10. Got panoramic x-rays and various photos
11. Got chest x-rays
12.  Realized Tom left his cell in Plastics, so he had to go back and get it

Walking all over the hospital and then discussing Harlie's history, meds and current issues, over and over again - is EXHAUSTING.  But each specialty has to know that the information they are looking at is current and accurate.  So, I get it.  But, it's still exhausting.

Then we left the hospital and went across the street to get some coffee.  Tom went in to order and I stayed outside with Harlie.  Those are the things you have to do when you're lugging an oxygen concentrator around.  Some places are just too crowded for our wide load.  Anyway, while I was standing outside with Harlie, it took all my strength not to burst into tears.  There was a girl standing there asking everyone who walked by if they wanted to discuss the Syrian refugees.  No one wanted to, in case you were wondering.  And I couldn't help but notice that I was standing just a few feet away from her, planted in my spot, and she never asked me.  Funny.  I guess she could tell that I had enough of my own problems to worry about.  Then Tom came out and we walked back to the hotel.  Tom went and got us dinner and we ate it in our room.  Now we are waiting for the baseball game to start.

There is a lot on my mind tonight.  But, somehow we'll get through.  Harlie is happy and that's what's most important.  She was so good today.  She really is a good kid.  And I don't know how or why.  She has every reason not to be.  For now, I thank God that she doesn't understand all of this.

Thank you for all your love and support.  We are feeling it tonight, and we are so thankful.  Also, I want to thank my neighbors, Jasmine and Soloman for having the boys (including Rooney) over for a sleepover with their son on Saturday night.  And my sister, Sandy, for hanging out with them on Sunday and taking them to see a movie (coincidentally, Cloudy with a Chance of Meatballs 2).  And Brandy for staying at our house on Sunday night and getting them off to school this morning.  And, of course, Bethany for keeping the boys and Rooney this afternoon after school until Grandma and Pap Pap got there to take over for the rest of the week.  Whew!  It really does take a village...

Tomorrow is our day off and we are all looking forward to it!  Thank you again!

Much love,
Christy xo

Harlie's first day of school...

My posts are going to be out of order.  But, it's the only way I can post right now.

Over the weekend, Harlie's Vest arrived.  A nurse called me to make sure everything was in order and to schedule our training time.  On Sunday, she came over to train us.  It took over an hour.

We have to do it for twenty minutes, two times a day.  Harlie isn't a fan.  The vest inflates and then air pulses through the tubes into the vest.  It's purpose is to help move mucus from her lungs.  Hers is ordered for use all the time - not just when she's sick.  I guess if she doesn't get sick much this winter, then that means it's working.

Last night was our first time doing it on our own.  We put it on Murphy and Cooper first, just so Harlie would think it was "fun."  But, she's smarter than that.  She knows it's not fun.  I was a little nervous about this morning's routine, with the Vest added into it, since it was going to be Harlie's first day of school!  The problem is that the Vest can't be done near a tube feeding time - which was 6am. So, I had Tom give her the first half of the can at 5:30 when he left for the gym.  Then I got up at 6am to give her the rest of the can and her meds.  Then I let her rest a little while longer before I got her up and dressed.  We started the Vest treatment a little ahead of schedule, before 7am.  She gets her breathing treatment at the same time.
 

Not a fan of the 20-minute treatment.
Bribed her with the iPad.

This bad boy is NOT cheap. (like $16,000!)
It's also not light.  And we will have to take it with us
when we travel to Boston, or anywhere else.  

Of course my healthy kid asks if he can have a turn next.
And then she kicked him. Sibling love...

Despite her initial reaction when told it was a school day,
I think she was probably a little happy to be going.

We travel light.

She's going to have to use her chair for a while.  Her classroom is SO far from the parking lot!  There is no way she can walk that far in a reasonable amount of time.  Especially with her oxygen requirement.  And her questionable spinal pain.  I'm rationalizing that it will mean for more energy for her work.  But, secretly, deep down inside, it kills me that she needs it.  I never thought we'd be here when she was this age (almost 7!).

Since I didn't get to go to open house at her school, I wanted to go in the class and meet her teacher.  As we got to her classroom, the class across the hall saw her and they all said excitedly, "Harlie's here!"  I had to really choke back the tears.  Just thinking about it now makes me cry.  They all seemed genuinely happy to see her.  Her teacher said that every day they would ask her about Harlie.  I love how kids are so concerned about her and how she's doing.

In class and somewhat cooperative.

Terri said she did all her work.  She just did it at her own pace.  Which is slooooow.

Last week her teacher sent home this banner the kids made.  The kids signed their names on a heart and glued it to the banner (and her teachers, too).  It is very big and takes up most of my main wall in my office.  I love it!

And I've been meaning to show you this puzzle a group of girls made for Harlie.  It is one of those really big floor puzzles.  A friend of mine has a summer camp for girls and they did this puzzle and made some other cute stuff for Harlie.  I love all the sayings on it - Never give up, Be yourself, Just keep swimming, She leaves a little sparkle everywhere she goes, Don't worry be happy, Be unique, Spread love, etc.  So cute!

In preparation of Harlie going to school today, I made a few checklists to make sure we had everything we needed.  I got a little chuckle out of her backpack checklist.  Notice the last item... oh, yeah, that school book.

We're going to need a bigger backpack.

Seriously, when I picked her up today (half days until she builds up a little endurance) I had to carry her school stuff in my hands.  We really do need a bigger backpack.  The one she has is a kid backpack (large, but designed for a kid to wear).  But, considering we are the ones carrying it, we need to get an adult backpack this time.

I have more to write and more pictures to share, but will have to do it tomorrow.  Thank you for all the love!

~Christy xo

Quick Update. Oxygen. Ugh.

I'm going to try to make this quick... it is already super late and I have another long day tomorrow.

A couple of posts ago I mentioned that Harlie had been coughing up some bright red blood and blood clots. Well, I ended up emailing her pulmonologist.  He was thinking maybe it was bronchiectasis and suggested a CT scan of her chest.  That is now scheduled for June 18.

Since then, the blood has come and gone.  And then partially come back again.  He also offered antibiotics.  But, since she was acting fine (blood was the only sign that anything was amiss), and we haven't confirmed diagnosis, I really was hesitant to start her on antibiotics.  She's been on so many.  And they usually wreak havoc on her GI system.  So, I held off, waiting for another sign to tip me in that direction.

Sunday morning was kind of rough.  She had a really barky sounding cough. She kept on pointing to her trach (sort of like she does when she's telling me she needs to be suctioned).  And she went around and opened all of her drawers with medical supplies in them, clearly looking for something.  She has never done that before (except to get a q-tip out or something).  I wondered if she was trying to tell me she wanted a trach change.  Maybe her upper airway was swollen, reducing her air leak around the trach, thereby reducing her normal air flow.  So, I showed her a new trach and she said, "yea" and then went and laid down on the bed so I could change it.  Crazy!

She was fine the rest of the day. But, Sunday night, her sats started to drop while she was sleeping.  We went on ahead and turned on the oxygen.  She was wide awake at 4am and there was a problem with the equipment.  So, I had to get Tom up to help me figure it out.  We're pretty positive that she never fell back asleep.  She was up way before her normal time and she was itching to get out of bed.  She was playful, happy and ready to go to school.

But, she seemed tired once there.  And she had developed a wheeze when inhaling.  That you could hear while standing next to her.  So, I went and picked her up from school and took her to see her pediatrician.

I brought him up to date and he agreed with my decisions so far.  He said she didn't seem sick to him at all.  Just that her upper airway sounded swollen (like croup) and that I should see how her pulm feels about steroids.

So, I emailed him again and he said if she seemed well enough to go to school, he wants to hold off on the steroids.

That was on Monday.

Today (Tuesday) I had to work REALLY hard to get her out of bed.  Harder than usual.  And when I laid down on her bed to keep her from getting back in it, she laid on the floor.  Hmm.... I gave her a few more minutes and then checked her sats since she had been off oxygen for a few minutes.  They were low.  Too low for me to send her to school without oxygen.  And I only have two tanks.  So, I kept her home.

This is so frustrating.  She really seems WELL based on her behavior and energy level.  She had a great session with the HI teacher that comes to our house weekly.  Cheryl said that Harlie was so engaged today! So, how sick could she be?

I asked her if she felt good or well and she answered, "well."  Then she signed "better."  So, I took her off the oxygen so we could all go for a walk with the dog.  There is something about that activity that I love.

We took Rooney off his leash to let him run around a bit and Harlie got out of her chair and "ran" around a bit, too.  She seemed perfectly fine and well, and was super playful and happy.  But her nails were kinda blue.  We didn't take the oxygen with us.

Since Cooper rode his bike without training wheels (he just learned a few weeks ago and hasn't been able to ride lately) we went to Bruster's for ice cream.  Harlie licked/ate more of her ice cream cone than ever before.  Maybe 10-15 licks instead of her normal 2.  So, again, how sick can she be???

We got home and her sats were in the low 70s.  Ugh.

So, now we have pretty much the same situation we had in the winter.  She appears to be fine, yet her sats are in the tank.  What gives?

Well, no one knows.  Her pulm told me that a chest CT scan is the equivalent of 50 chest x-rays.  Considering she just had a CT scan a few weeks ago, that seems like a lot of radiation in a short period of time.  So, since the blood appeared to be going away, he was thinking it wasn't worth the radiation.

However, now I am thinking it is.  This whole oxygen thing while appearing to be perfectly fine is really bothering me.  Is there something else that's causing this that a CT will show?  She hasn't had a chest CT in years and years and years.  It might be helpful to see what's going on in there.

But, unfortunately, that's not going to help her get to school - and stay there - for her LAST week!!!  It kills me to think she could miss the last freaking week of school.

Terri (her nurse) is off tomorrow.  So, now I'm trying to decide what to do with her. Take her with oxygen?  Keep her home?  I DON'T KNOW WHAT TO DO!!!  There is no easy answer.

I guess I'll have to wait and see how she does tonight, and how she looks/acts in the morning.  I am not a happy camper right now.  I just want her to be well.  And if she's not, it would be kinda nice to know what's going on so we can try to help her.  I'm so over living in the dark.

Her pulm prescribed a new breathing treatment.  But, I didn't have it until right after I gave her her normal breathing treatment.  So, now I can't give it to her until morning.  I hope it does her some good.

 Okay, I am falling asleep while trying to write this.  I will try to update again tomorrow...

Thanks!
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

Quick Update

On Monday, Terri came in and I was still in bed.  She started her assessment of Harlie (who was also still in bed) and then she poked her head in my door.  She said, "Harlie is on four liters of oxygen - and she's only at 85%?"  I said, "Yes."  Four liters of oxygen is a lot.  She looked concerned.  And then she left.  A few minutes later she came back and said that her trach had some bloody secretions.  And that she thought maybe she should go to the doctor.

But, I was in no condition to take her to the doctor.  Or the ER, which is where I knew she'd end up.  Well, right at that time my friend Jennifer called.  And I told her what was going on.  And wouldn't you know that she offered to come over here and drive Terri and Harlie to the doc and ER for me, so I could stay here and rest?  Wow!  So, my Mom came over to hang out with Cooper downstairs.  And Jennifer and Terri took Harlie and I stayed upstairs and slept.  Crazy, huh?  And I crossed my fingers that there would be no reason to admit Harlie to the hospital.

They got back later on that afternoon, with Harlie, luckily.  Terri said that Harlie was a mess until they got to the ER.  She said that once they were there Harlie got herself together and smiled at everyone while playing on the iPad, looking all innocent like nothing was wrong.  I guess she realized where she was going to stay if she wasn't on her best behavior.  She didn't cough up any blood or anything.  She said the doctors were like, "So, what brings you here today?"  I had to laugh.  She has totally done that to me before.

Her x-rays were good (which is so bizarre considering her sats are so low!).  And they tested her for the flu and her test came back positive for Influenza B.  No surprise there.  See? I told you we all had the flu.  But, she's been on Tamiflu since Friday.  So, at this point, there's nothing we can do but treat her symptoms.

Today is Friday and I am definitely feeling better.  And I can't tell you how good it feels to be back in the land of the living again!  I might even try to run a little this weekend. I'm not back to 100%, but I'm getting there!

Harlie is still on four liters of oxygen.  And her sats still go to the mid 70s when she's off the oxygen.  But, she seems happy.  Of course she's pretty much confined to the couch since we've been leaving her on trach collar (humdified air with oxygen) to help keep the oxygen from causing more mucus plugging.

I have to tell you that I am really over her not being well.  She has been sick all but three weeks since Christmas.  And I miss a healthy Harlie.  It's been so long since she's been energetic and playful.  And I'm sure she misses being healthy, too.  With any luck, she will recover from this flu and this will be IT.  I just had to reschedule that darn sleep study.  Again.

On a good note, she is doing great with her BAHA.  I'll have to take a picture for you so you can see it.  But, now the processor just clicks right on her head.  It's so cool.  She's still sensitive and fights putting it on for a while.  I usually have to withhold something she wants (like the TV or iPad) until she lets me put it on.  It only takes a second, but you do have to press a little hard, so maybe it still hurts a little.

Anyway, while wearing it, for the first time EVER she actually asked me to turn the volume down on the TV!  Can you believe that?  And then while using her communication device, she turned the speaker volume down.  I'd say that's a pretty good sign that she's hearing better with it actually being bone anchored now.  Woohoo!  Now if only we could get her back to school so we could see it in action.

On Thursday night, Paige (Paige Stevens Photography) came over and did a quick little photo shoot with Harlie.  This was our third appointment - every other time Harlie was too sick.  We took Harlie off the oxygen for the photos - and just let her hang out in the 70s.  You wouldn't even know it, either.

Harlie was so good!  She was completely cooperative in every way!  I just couldn't believe it.  She is really growing up.  She no longer squnches her face all up when she smiles.  Wow.  What a difference that makes!

Paige is so good, too.  I really can't wait to see these photos.  We did it to get a photo of Harlie for the new flyer for the 2nd Annual We Heart Harlie fundraiser.  Lynda is already busy making big plans.  So, save the date!

We Heart Harlie

May 18th, 8am to 11am

at Glen Allen Elementary School

And this year there will be a 5k, too!  

There will be the raffle like last year.  So, if you have a service or product you would like to donate, just let me know!  We are working on getting some cool printed t-shirts, too.  I know a lot of people wanted to order shirts, but we just couldn't keep up with the demand.  So, this time, we'll have them on hand.  More on all that as things develop...

Tomorrow (Saturday) is Cooper's first soccer game.  I have to admit that I'm a little worried.  The other day Cooper and Murphy were kicking the soccer ball in the backyard and when Murphy kicked the ball, Cooper started crying.  Oh boy.  Does that mean he's going to spend the whole game crying?  Guess I should prepare myself to be pretty embarrassed.

That's it for now.  More later!

Much love,
Christy xo

Oxygen Update

Since it's been a while since my last post, I want to give you a quick update.

Harlie is STILL on oxygen.  I am trying so hard to be patient - after all, I have virtually no control over the situation.  But, it is not easy.  It has been over two weeks now!  She has only been to school for two and a half days since December 21st.  And in all that time, from then to now, she has only left the house a few times - those two and a half days for school and a few doctor's appointments (and the ER). I am getting cabin fever for her!

And I want my house back, I want my routine back.  I want her to go to school and learn and try to make friends.  We check her sats regularly to see where she is.  We give her short breaks (sometimes long breaks) from the oxygen, each time hoping that she'll keep her numbers up.

Sunday she seemed to do well.  And I really thought she turned the corner.  But, her numbers were low again today.  I can't tell if the breaks are setting us back, or what.  But after a while she wants the oxygen off and she wants to be free from the tubing.  Plus, she simply will NOT wear an HME (which humidifies the air she breathes) when she's wearing the oxygen.  I guess the trach mask rubs up against and it must hurt.  So, the oxygen dries her out and causes mucus plugs.  Sometimes, keeping her airway clear is a full-time job!  We've gone through tons of saline bullets and suction catheters.

And frankly, worrying about it and thinking about all the school she's missing has really worn me out.

You might remember my story about how difficult it was to get more oxygen tanks delivered...  well, last week, during one of Harlie's breaks from the oxygen, Rooney got to her tubing and chewed up a connector piece that connects the tubing from the oxygen concentrator to her trach mask.  It was the only one I had.  We managed to save it temporarily with medical tape.  And I made the mental note to ask for more when I put my supply order in the next week.

Well, on Wednesday night Rooney got to it again (ugh!) and destroyed it.  The next day we tried other things to hook her to the oxygen during the day.  But, nothing else worked.

It was pouring rain - a real disgusting day (Thursday).  And I had to go out and get some boots and gloves for the kids because we were supposed to get some snow on Friday.  Well, more than three snowflakes, and they cancel school.  So, we were planning on them being home.  And since it snows so rarely here, I knew the boys would want to be out in it.  So, while I was out looking for winter wear (like every other mom in town who doesn't plan ahead) I called my DME (supply company) to try to explain what part I needed and see if they would bring it to me.  Trying to describe it proved difficult.  Well, I didn't think it was difficult to describe it, but it was difficult for them to understand what I wanted.  Whatever.

I was thinking that since it was the thing I needed to supply oxygen to Harlie, that they would deliver it to me - the same as they would oxygen.  Well, I thought wrong.  And not only that, but she said that she could put it in UPS and I'd have it the next day.  Huh?  How is that acceptable?  What would I do until then?  Seriously????  Again, it's oxygen, people.  So frustrating.  In fact, I was so frustrated that I kind of went off on this lady - not in a mad, yelling kind of way, but more like a complaining, no one is trying to help me kind of way.  She said I could come pick up the part.  Great.  I suppose that's better than nothing, but it's downtown (and will take me over an hour to get there and back), it's pouring outside, and I haven't found boots yet and I have to pick up the boys by noon.  Awesome.

So, I hung up the phone and a lady standing nearby said, "I'm sorry, I couldn't help overhearing your conversation."  And then she asked me some questions like, is it for your daughter, how old is she, is she in the hospital or home, etc.  Then she told me that her husband is a quadriplegic and she has been caring for him at their home for the last six years.  And that she just put him in a home (VA hospital or something in another town over an hour away) yesterday.  She said that she knows how hard it is to be a caregiver and how much it takes out of you and she just wanted to give me a hug.

Can you believe that?  She started crying and well, I simply cannot see someone cry without crying myself, so then I started crying.  I wasn't sad for myself, I was just sad that it has to be so hard to care for someone you love.  And how sad she must be to not have him at home anymore because she knew she couldn't do it anymore (she was probably in her 70s).  She was probably out shopping simply because she could.  Or maybe she didn't want to be home all alone.

And then I started to think of all my special moms.  Especially you, Ann.  And I wish that we could all live closer.  Because no one understands how exhausting it can be unless you've done it yourself.  And this lady knew.  She totally got it.  And I felt so sad for her.

So, we said good-bye and I left the store with two pairs of boots - one for Murphy and one for Cooper. I felt terrible buying just boots for the boys.  But, I wasn't sure Harlie could even go out in the snow - or that she'd want to.  And the boots were more than I wanted to spend in the first place.  I called Tom and told him how much they cost and he told me to try Wal-mart.  While we are not fans, they often have inexpensive snow boots - and with as little snow as Richmond gets, they will do.

At this point, I am calling Terri often, asking how Harlie's numbers are without being on oxygen.  Low 80s, which isn't great.  But, not an emergency, either.  And now, there is no way I can get downtown, and back before noon to pick up the boys (me and a friend take turns picking up our boys since they are in the same class and we live on the same street).  So, I go to Wal-mart first, find boots, buy them, with the plan of returning the more expensive ones, and then go to the preschool.  Pick up the boys, deliver J home, and then grab a snack for me and Cooper and head right back out again to go get that part.

I get there, and the parts they have for me are not correct.  Luckily a respiratory therapist that has come to my house a million times to do monthly checks on the equipment was there and she and I get along great.  I was able to explain to her what I needed.  Just in case you're interested here is what the set up looks like...

The green straps go around her neck so the mask part (trach collar) hangs in front of the trach.  The trach collar connects to the corrugated tubing.  Then you need a part that connects the bigger tubing of the corrugated part to the smaller tubing of the oxygen line.  The oxygen line is the small tubing on the right.  And it runs through the house and upstairs to the oxygen concentrator.

Here's a close up of the part I'm talking about...

You see the tubing with the ridges, then a small clear plastic piece, then a white plastic piece, then the oxygen line.  The white plastic piece is what Rooney destroyed.  I think the RT called it a "clown hat." Anyway, I suppose it doesn't really matter.  We finally got it worked out and I took my parts home and promptly put Harlie back on oxygen.  Then I took a really deep breath.  This oxygen dependancy thing is really quite worrisome and is really taking some major energy out of me.

Thursday night it started snowing, and just like predicted it stuck to the roads.  It had been raining for like three days straight, so everything was so wet.  Including the snow.  I took Rooney for his first walk out in the snow.  He was not excited about it until he realized he could eat it.  Then he was all about it.

And yes, of course they canceled school.  And no way my nurse wanted to drive in that stuff, so she didn't work that day, either.  That left me with the kids.  Ugh.  I knew that the boys would want to go sledding at the school (there is a great hill over there).  But, there was no way I could take Harlie.  Even if I was okay with taking her - I knew there was no way she could walk back up the hill after sledding down.  And the oxygen, etc. - no way.  Luckily, Murphy totally understood and didn't make me feel guilty about it at all.  He didn't mention it again, and didn't even complain that he couldn't go.  He can be so great sometimes.

But, I did struggle a bit with Harlie.  For one, when I tried the boots on the boys Thursday night, she pointed to herself asking where hers were.  Ugh.  Luckily, we had a pair of boots from a few years ago that are two sizes too big for Cooper.  So, I grabbed them, and gave them to Cooper, and then gave the boots I bought for Cooper to Harlie (they wear the same size - isn't that crazy?).  She was cool with that.  All boots I buy are universal in color for that very reason.

So, on Friday, she wanted to go out in the snow.  I tried to distract her.  But when she went to the communication device and said, "I want sled" I knew there was no getting out of it.  I know she's recovering from pneumonia.  And yes, she's still on oxygen.  But, it snows like once a year here.  How could I tell her no?  She has to have some fun, too!  And she's been stuck in this house for weeks and weeks!  Plus, she put her coat and boots on all by herself.

So, I let her.  We stayed in the front yard.  It has a bit of a slope to it, so the boys were sledding down our yard (I love how they did what they could without complaining!).  So, I put her on the sled and pushed her down a few times.  After about three walks up the yard she was done.  I knew that little bit of "exercise" was wiping her out.  We went back inside and hooked her back up to the oxygen.  And that was it of her time in the snow.  No pictures.  I tried, but one camera's battery was dead and the other's memory card was full.  And my cell must not have been handy.

But, luckily it was handy later...   Harlie had just watched Wild Kratts (an animal show).  When it ended she said something that sounded like Wild Kratts.  Well, it had either two syllables or two words.  I wanted to show her the word "another" on her communication device.  So I asked her if she wanted to watch another Wild Kratts.  She said no, and then repeated what she wanted to watch.  Which I would have sworn was Wild Kratts.  Well, I was afraid that she didn't know what "another" meant.  So, I asked her if she wanted more Wild Kratts.  She said no, and continued to repeat it - with complete patience.  I am a brick, so this horrible "conversation" went on for longer than necessary.

I asked her to give me a clue with the device, does it have an animal in it?  What kind?  But she shooed the device away (which is unusual).  She must have repeated herself 20+ times.  I wanted to video her saying it so I could post it on Facebook and ask if anyone else could understand her.  Cooper was in the room, and I asked him (because sometimes he knows what she's saying) but he didn't know either.  It was really ridiculous.  I finally gave up and told her that I just didn't understand what she was saying.  And I said I was sorry a bunch of times because I felt like crap.  I really, really hate these moments and they just make me so angry that she can't talk.  UGH!

She got up and left the couch and I thought she gave up from trying to watch whatever it was that she wanted to watch.  I got up, too, and went to straighten up the kitchen.  Harlie came into the kitchen with the bin full of markers and a piece of paper.  I thought, "oh, good, no TV, she's going to color, awesome!"  But then she said, "Mama" and pointed to her paper.  And this is what it was...

SpongeBob Square Pants

SpongeBob!!!  That's what she was saying!!!  I cannot even begin to explain my reaction.  I was a mess of emotions.  The fact that she sat there, so patient with me, and thought of drawing a picture - all by herself - of what she wanted to communicate to me was just amazing.  And it totally proves how freaking smart and resourceful that little girl is!!!  Well, at least it does in my mind.  Not to mention how fantastic her drawing is!!!  And that she drew it in a yellow marker, just to make sure I would get it.  I was laughing, I was crying, I called Tom, I called my mother, I posted it on Facebook.  Whew!  She was pretty proud of all the attention this drawing of hers was getting.  And I put SpongeBob on TV, of course!

By Sunday she seemed to be getting better and was staying off the oxygen for longer breaks.  We really thought she was turning the corner.  I ran the Frostbite 15k that morning.  It was 45 degrees, and pretty perfect running weather.  Afterwards, we went to brunch at Eat in Oregon Hill.  It was so yummy!

Niki and me.

Left to right, Les, Ginny, Niki, me, Michelle, Scott,
Brad, Tom, Andrew (you really can't see any of them) and Rick.

We had a great time.  Lots of laughs all around.

By Sunday night, Harlie's numbers were looking better without oxygen.  Woohoo!  The kids didn't have school on Monday, so I thought by Tuesday, she'd be good to go.  Her pediatrician told me earlier in the week to keep her home from school as long as she's on oxygen.  He said she's still recovering and if she caught something else, the combo could land her in the hospital and she'd miss even more school.  Well, okay, fine.

We put her on oxygen during the night, and then let her have a break after she was awake.  She did okay for a while, but then slowly her numbers went down again.  By noonish or so, she was back on the oxygen again.  Grrrr!

Plus, the dreaded reaction to the antibiotic combo she was on has hit full force.  It has really done a number on her GI system.  So, between that and the oxygen, she's in no way ready for school tomorrow.  Total bummer.

Well, as usual I have much more to share with you, but I am falling asleep as I type now.  So, I have to go.  So much for my "quick" update!

Thanks!
~Christy

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