Friday, August 26, 2016

Summer Reflection

This summer has been interesting.  Without a doubt, it has been the most "relaxed" of the last 10 summers we've lived.

You know that "On this day" thing on Facebook where you get to see what you posted on that day from years past?  Well, this summer has been a constant flashback of surgery after surgery.  I feel like each day I've relived it a little.  One day it was a post about coming home from Boston.  The very next day was us heading to Boston again!  Geez, no rest? A post about sending the boys to their grandmas, and how I missed them already.  Posts providing updates throughout surgery, she's in the OR, she's on bypass, she's off bypass, she's out, she's sicker, she's better, etc., etc.  How did we live like that?  No, seriously, how in the world did we do it?  This made me think about it.  So, here is a summary of the last 10 summers of our lives (all her other surgeries at other times of the years are NOT included):

2006:  I was pregnant with her.  In June, we learned that she had major heart defects, along with her major lung defects.  We were asked more times than I can remember if we wanted to terminate the pregnancy. The rest of the summer I had weekly appointments with several doctors to make sure she was still alive and that I wasn't in danger.  We were advised to make all decisions just in case she didn't make it.  And we were told to leave Richmond if we wanted to give her the best chance of survival.

2007:  My adorable, tiny, little baby girl, who already had six surgeries (two of them open heart) was working way too hard to breathe.  After two months in the hospital (March - May), followed by many trips to the ER, she limped into August, when she had most of her right lung removed.  That was a life-saving surgery.  Her life was immediately, immensely better -  thank God and her wonderful doctors.

Due to a post-surgical complication, that summer also included a 911 call from my house (something you never want to do) and a helicopter transfer from our local hospital to Children's National in DC.  That was so crazy that I didn't get any pictures of that experience.

2008:  She had her first jaw reconstruction and craniotomy in Norfolk, VA.  I was also pregnant with Cooper at the time.  I'm pretty sure every nurse and doctor thought we were crazy for having another baby.  But, hope is a funny thing.  She spent the summer with her jaw wired shut.  Turns out the surgery wasn't successful.  She fell in the bathtub and hit her chin on the edge of the tub.  I think that negatively affected the reconstruction, but I don't think it changed the final end result.

One of my all time favorite anesthesiologists.
He was so great that he came to check on her throughout her stay. 

She always finds her smile again.
2009:  She had her third open heart surgery.  This one was particularly rough emotionally.  Her surgeon's original plan was to do two procedures (the DKS and the Fontan) at the same time.  But, after having a conference with many other surgeons, he changed his mind and decided to do just the DKS.  This was disappointing because we wanted to avoid her having to have a fourth open heart surgery.  He came out of the surgery and said that her heart has "the world's worst scarring" and he wouldn't have had the option to do the second procedure anyway because getting through that scar tissue was so time consuming.  And you can only be on the heart bypass machine for so long.

It's always so hard to hand her over.  

Our friend Donna came to visit.
Smiling again!
2010:  She had her fourth open heart surgery, the Fontan.  Nothing really stands out, other than that she is a champ.  Oh, and I spent the summer training for the Richmond marathon.

Waiting to go back.  Worry distraction play time.

It only took 20 minutes and a whole lot of work
to get her up in my lap.  
2011:  She had spinal fusion surgery at the end of March and was in a body cast for weeks and weeks.  Her bone graft in her spine became infected and she had to have additional surgeries complete with a wound vac in May.  That summer she spent recovering.  Looking back, it was probably the most difficult recovery of all her surgeries.

2012:  She had two surgeries that summer.  She had her first BAHA surgery.  And then we headed up to Boston for her fibula free flap mandibular reconstruction (which was her third jaw reconstruction).  What made this one so different was that they took her fibula from her leg and implanted it into her jaw.  At the time her jaw was disconnected on her right side and was only held together by scar tissue around it.  They connected blood vessels to give the bone life and we waited to see if it "took."

The boys being supportive.

Not again!  Harlie hiding from the docs before being
taken back for jaw surgery.

Back home and smiling again!
2013:  In July, we returned to Boston for her jaw distraction surgery.  Once the bone took and healed properly, they were able to distract it.  They essentially broke her jaw, put pins and rods on both sides of the break and we turned the screws each day.  Each day, with the turns, her jaw would break again and new bone would grow, making her jaw "longer."  We turned those screws three painful times a day for twenty-some days.  At the end of August, her incision became infected which required four debridements and another week in the hospital.

The amazing docs in Boston -
Dr. Brain Labow and Dr. Bonnie Padwa.

It's a tough job being her dad sometimes,
but he always rises to the challenge.
They were teaching us how to turn the screws.

Recovery miraculously goes faster when you have your family
surrounding you.  This is when our friends surprised us
by flying Tom and the boys up to Boston to visit us. 

2014:  Her lungs were bad this summer.  She had a CT scan that revealed that she had inadequate alveoli.  She was on oxygen 24/7.  And it was mentioned that she will need a heart and lung transplant at some point in her future.  Although, you never know what the future holds.  Because she's doing so great now, that that's hard to believe.

Oxygen at the pool?  No problem!
 We went on vacation that year and she couldn't spend much time outside.  And she couldn't walk from the house to the dock.  That's okay.  We're problem solvers.

Wagon ride to the dock.

Fishing once the sun went down.

She caught the biggest fish!
2015:  She had a sleep study and we anxiously waited for the results for weeks and weeks and weeks!  And, finally, on August 11th after almost nine years with a trach, she was decannulated!  Woohoo!!!

So excited!

Dr. Preciado - the doctor who saved her life
at the very beginning.  He got her breathing tube in
right after she was born (which was a challenge).

All done!

Leaving the hospital without a trach!  Woohoo!

Visiting family in Pittsburgh!
2016:  I can state with confidence, that this has been the best, and her most healthy summer of our lives since 2006.  I definitely feel like the last ten years have been traumatic.  Thankfully, they've also been full of great stuff, too.

Just look at her! Can you believe all she's been through? There are not enough words to express my gratitude for all that's good now.  Harlie is a very happy girl - there is no doubting that.  And, if all goes well, she will start school on the first day of school, like most kids.  The only other time she was able to go to school on the first day was in the fall of 2011.  Isn't that crazy?!  So, keep your fingers crossed that nothing messes her up this year!  This is shaping up to be a great year and I'm excited for all she will get to experience.

So, thank you again, to everyone who has ever had a thought or prayer for her and us over the last 10 summers (and years, but I'm focusing on the summers here).  Almost every day of this summer I saw old posts on Facebook from loved ones sporting their We Heart Harlie tees, or writing it in the sand, chalk, paint, etc.  So many expressions of love and support!  I hope you know that I am honest and sincere when I say we couldn't have survived it without you.

Love you all!
Christy xo

Tuesday, February 9, 2016

Harlie Update

It has been so long since my last post.  Like FOUR months!  Ugh.  I have started so many posts, but I've never been able to finish them. Harlie has been doing so great that we feel like we have a whole new life.  It's been an adjustment (a great one) that has consumed our lives.  No more time for my computer.  No more time for writing.  And, for the most part, I've been okay with that.

Here's where we are:

Harlie had stoma closure (her ENT in DC surgically closed the hole left by her trach) in early October.  Then, after two years of being on home bound, she finally returned to school on November 9th, as a second grader.  She was so excited!

This is her second grade photo.

October 2015 (9 years old)
I just happened to come across this next photo tonight.

February 2012 (6 years old)
It was taken before we went to Boston for jaw reconstruction.  You can see how little jaw bone she had.  Kinda crazy.

Anyway, she loves going to school now.  What a change from two years ago!  Since her start, she's missed maybe 8 or so days of school for being sick, which isn't so bad, all things considered.  She's really doing great and I can't tell you how much I LOVE getting emails from her teacher that say she's had a great day and they are loving her progress!

At first, she went from 8am to 11am, Monday through Friday.  She only attended the hearing impaired class.  But, in February, we added another hour to her day.  So, she goes to her general ed class for writing and then she goes to lunch, then the bus brings her home at noon.

The school found a nurse for her three days a week.  So, on those days I take her to school, and turn her over to the nurse, who stays with her, rides on the bus with her, and then the bus returns the nurse back to school to get her car.  On the other days, I take Harlie and Brandy to school and drop them off.  And then Brandy rides the bus home with her.  She also still has a teacher that comes to our house some afternoons for more support.

Having the school provide a nurse for a few days has been very helpful to my schedule.  On those days, Brandy gets Harlie off the bus and stays with her for the afternoon, so I can work.  Yes, so I can work.  At a job.  Not at home.  I'm aiming for 10 hours a week.  But, I don't think I've been able to do that yet.  But, I'm getting closer, which is good.  It is so hard to believe that it's been nine years since I had to give up my career.

It's so funny how life works.  I had just made the most money I had ever made, we sold our house and bought a new one (well, new to us, I mean) with the intention to remain a working mom for a while and BAM!  I left work one day, and was never able to return.  That would have been helpful to know before we bought this house.  Yeah, haha, so funny.

Anyways, back to how great everything is...

Even though she isn't sporting her trach anymore, I was still nervous about throwing her in a general education classroom.  I might have forgotten to tell you that the school agreed with me and they put her back in second grade again.  I was really impressed with her IEP team and how they all wanted what's best for her - and that we were all on the same page about what the "best" was!

So, I voiced my nervousness to her teacher and vice principal (totally in love with that woman!) and they said we could talk to the class to prepare them.  So, in the end of January, I went to her school and her hearing impaired teacher, the VP, the school counselor and me went into her second grade classroom.  Her teacher read the book we made for her class two years ago called, "My Name is Harlie."  It went great.  Although I was a real nutcase and said something totally stupid like, "she's worked really hard to be in school and it's a blessing to be here" or something like that.  As if any kid in that class could be capable of being grateful for being IN school.  I'm rolling my eyes at my own idiocy right now just thinking about it.

Anyway, the kids were cute and the VP said something like, "So, boys and girls, do you think Harlie looks scary?"  And they were all, "NO!"

Yay!  One girl raised her hand and said she sat next to her in an assembly the other day.  Super cute!

The book that her teacher read was written right after we went to Boston the first time for her jaw reconstruction.  So, I gave an update and told the class that all was successful and that she got her trach taken out.  But, I told them that you can still see a scar from where it was, but that it doesn't hurt her (Kids are usually bothered by something if they think it hurts another child.)  It was interesting to me that a little boy asked how long she would have that scar.  I told him forever.  Along with the other 18, but I didn't tell him that.  :-)

Since she was going to go to lunch with the class, I thought I would try to send her with yogurt so she would have something to do while the other kids were eating.  I can't believe it, but she has eaten her yogurt every day at lunch!  The whole eating by mouth thing is a complicated issue mixed with my emotions about the whole thing that I really just didn't want to deal with.  Over the years I've been SO excited about her swallowing and eating and thought so many times that her eating that one meal was going to change the course of her future.

I was wrong. She had her good days.  But more bad ones, probably.  And ultimately, after many years and so much hard work I had to finally accept that maybe eating by mouth isn't all that it's cracked up to be.  She's happy without it.  I should be, too.  You can't have it all.  You win some, you lose some. Pick your battles.  You get my point.  

And while her eating yogurt at school is fantastic, I have to keep it in check.  I no longer have that emotional energy to spend like that (getting my hopes up SO high, just to come crashing down again).  And she can't chew.  We'll have to work on that with help, I'm guessing.  So, I'll give her smooth foods for now and see what happens.

Another HUGE thing that deserves it's own post is that she is taking SWIMMING LESSONS!  One of the reasons why I haven't blogged in so long is that I'm having trouble downloading my photos onto my computer.  So, for example, I want to post a photo and video clip of her going under (what a big deal!) but I don't have it on this computer.  So, I will have to fix this situation and get a post up about her swimming.  Only something we dreamed of for NINE years.  No biggie.  ;-)

Well, that's a start.  I must admit, I missed talking about her.  And she's been so funny, too.  Her communication skills just get better and better every day.  In fact, the other day she was able to tell me that a boy in her class wore a We Heart Harlie shirt to school.  I can't tell you how incredibly cool it was to ask her how school was and have her be able to tell me something about it.  So, to the mom of that little boy, thank you for buying a shirt!  I know it makes her feel so loved!

Hopefully I'll post again - sooner rather than later!

Thank you and much love!
~Christy xo

Saturday, October 3, 2015

Stoma Closure Soon!

Harlie is doing great.  I took her to her 9-year old well check with her pediatrician yesterday.  And I think it was the shortest well check appointment she's ever had.  There was nothing to discuss, really. I can't tell you how great that feels!  She had to get a flu shot.  She can't get the mist because of her medical issues.  And when she realized she was getting a shot, she lost it.  That girl is a fighter, through and through.  And she is done with getting poked, I can tell you that.  It was not a fun experience for any of us.  It's not the shot that gets her, it's the anxiety and fear of what's going on that does.  It looked like an episode of PTSD, to me.   Poor kiddo. For as happy as she is, she still has too many bad experiences and memories to go with them.

She now weighs 48 pounds and is 46" tall.  She is not on the chart for height.  

But, health wise, she's doing great!  We went to DC to see her ENT on September 9th.  Here we had been thinking that her stoma (trach opening) was closing nicely, and the first thing her doc said was, "Wow, that hasn't closed up at all. I bet I could get a trach back in."  Please don't, I thought.  I had to laugh.  I guess you see what you want to see, so we thought it was tiny.  Oh well.  

The good thing is that he said he needs to close it.  I know in some cases they wait a while.  But, in hers, it is a pain in the butt.  It leaks really bad and it makes an annoying sound most of the time.  It rattles because of the secretions.  Plus, it really reduces the clarity in her speech.  He said his OR schedule was about two months out.  But, when they called me to schedule it, he had an opening on October 9th!  Woohoo!  That's a Friday, and she will stay in the ICU at least one night. 

Tom and I are signed up to do the Rugged Maniac on the 10th, but stoma closure is way more important.  Plus, I don't like to get dirty when I run.  So, to be honest, I wasn't that upset I would have to miss it.  

This will be Harlie's first time going under anesthesia without her trach.  And her mouth doesn't open very much (it's hard to get a spoon with yogurt in her mouth, it's that small).  So, she cannot be intubated as normal.  So, they are going to have to try some other ways.  As far as the surgery goes, he doesn't just stitch up the hole. He has to actually remove all the scar tissue that's there, so the fresh wound will heal on itself, basically... I think that's what he said.  And he said that she will come out of the OR with a small trach in.  We will wait for her to wake up and then we'll decannulate (take the trach out) again.  I told him I was so glad he told me that.  I would have been really upset when I saw her come out with a trach!  

Anyway, we've been counting down the days.  Then yesterday, I got a voice mail from our nursing agency that said our Medicaid waiver (Harlie went on a different waiver after the trach came out) put us on an Optima insurance policy.  I listened to it as we were rushing out the door to go to her well check appointment.  And I thought, okay, whatever, as long as she has Medicaid, those are details I don't care about.  Moving on...

Then, a few hours later, I got a call from Harlie's ENT office.  She said that they were working on the insurance approvals for Harlie's stoma surgery and that the hospital doesn't have a contract with Optima!  WHAT?!  Yeah, that's a problem.

So, in a panic, I start making some calls.  Apparently, we were just put on this Optima plan as of October 1st.  I HATE paperwork, and I get a lot of it.  So, I dug through my pile, and found a letter dated September 23.  It doesn't sound urgent at all. But, it says that we are going to be put on an Optima plan as of October 1st, and if we would rather be put on a different plan (it included a brochure for several different plans) we had to notify them by September 30.  Hmmm, so they printed the letter last Wednesday.  Maybe it went out in the mail that day, maybe the next.  I might have gotten it by Friday, which might have given me two business days to make a change.  I'm sorry, but I do not look at all my paperwork in that kind of time frame.  Nor have the time to call all of her doctors/hospitals to see what plans they accept.  So, crap.

In the brochure, each plan (Anthem, Optima, etc.) lists the facilities that contract with them.  There are four plans and not one of them contracts with Children's National Medical Center in DC.  It is the only major children's hospital around here.  So, I asked her which plan contracts with CNMC and she said, "It's not in Virginia, so none."  Now, I get that it's technically not in Virginia since it is in the District of Columbia.  But, seriously???  I can tell you for a fact that CNMC sees plenty of Virginia Medicaid patients.  What the hell?!  I called Harlie's ENT office and asked her if they take Anthem, and they do.  So, that's weird.  Clearly, they don't want the average Medicaid recipient to know they can, in fact, go to CNMC.  Damn, it's hard to need specialized services - in EVERY area (medicine, education, etc.)  It feels like the services are there, you just have to work hard to find them.

So, I explain my situation, and shockingly, she appears to be sympathetic.  She told me who to call and after a few more phone calls, I get the right person on the phone.  I'm thinking that I can switch to Anthem.  But, that switch won't be effective until November 1st, which doesn't help me on October 9th.  So, the nurse case manager with Optima put in an "urgent" request for review for an out of network approval.

I don't want to move this surgery back.  Not even one day, much less however long it would take for me to reschedule it.  We are going camping in a few weeks and the thought of trying to keep Harlie's stoma clean for three days in the woods, around an open fire, with no running water, sounds downright impossible.  It would be awesome if it could be closed, and all healed by then.  Now I just have to cross my fingers that it gets reviewed, and approved before Friday.

Plus, Harlie is ready to go back to school.  But, I am not sending her until that stoma is closed. I have realized that Harlie gets more stares with a hole in her neck than she did with a trach in her neck.  A few weeks ago, we went to Kings Dominion for the Altria Friends and Family day (my niece works there and gave us her free tickets).  I want to post more about that day soon.  For some reason, I found myself surprised with the staring.  Harlie was on a train ride in the kid area and a little girl was in the car right in front of Harlie.  So, Harlie was the first one in our car, and the girl was the last one in her car, putting them close together.  That little girl stared at Harlie the entire time.  I know people have to gather information, and that most people have never seen someone with a hole in their neck, but come on.  Even a parent couldn't look away when we were standing in line.  I get it to a certain degree, but I'd much rather them just ask me what's going on.  I'm always happy to share and educate others about Harlie.

Anyway, since Harlie wants to go to school for the first time, like ever, and she's currently super proud of her naked neck, I don't want her to go and get negative feedback from other students.  I feel like we're in a delicate mode of progression regarding her education, and I don't want anything to disrupt that.

Speaking of... I can update you on her education, too.

On September 24, we had a component meeting for her upcoming IEP meeting.  Last year, while on home bound, Harlie's teacher came to our house during the morning/early afternoon.  And that worked out great.  The boys were at school, the house was quiet.  And elementary aged students have proven to do better learning in the am.  So, all was good.

This year, her teacher is not allowed to come during the school day. This is another area where it is a struggle to get the specialized services you need.  I don't understand the way it's set up or why this isn't allowed, so it makes it very difficult for me to solve the problem.  So, she now has two different teachers that come to the house, AFTER school hours.  This has proven to be very challenging and not nearly as effective.  The boys are home from school, and two days a week, I have to rush Cooper to swim lessons at NOVA.  Since I have to take Harlie with me (it's after Brandy leaves for the day) and we don't get home until 3:30, her school day doesn't start until after that!  A kid with no barriers in learning would have a tough time learning under those conditions!

So, during the meeting, I gave the team an update on her medical situation and explained that I would like to try to send her back to school after stoma closure/recovery.  There are some challenges, though:

1.  Her endurance.  So, we are going to start with half days first.  And go from there.  We'll add more time/classes as she can tolerate.

2.  Potential sickness.  She was sick all the time when she was in school last.  So, I want a plan in place for her to quickly get services at home again, should she need them.

3.  Nursing.  As of right now, I don't have nursing coverage Monday through Friday.  So, I don't know that I can even send her every day.  So, I would like to be able to send her when I can, and on the days I can't, I want them to come to the house - during the school day.

4.  School hours.  Until I can send her back to school, I want to change her school hours from after school, to during normal school hours.

5.  Grade level.  She is technically in 3rd grade this year.  But, developmentally, she is not as far along as typical 3rd graders.  She is really struggling to learn how to read and all of her education is on a 1st and 2nd grade level.  So, I don't think it makes any sense to put her in 3rd grade.  She won't be able to spend any time in her class anyway.  She'd have to be pulled out for all of her learning.  So, what's the point?  And making friends would be almost impossible, considering they wouldn't be together during the day.  My argument (and desire) would be to put her in 2nd grade, again.

So, they are working on those things and hopefully, all will work out the way I want, which I think would be the best for Harlie.

She really is making a lot of progress, overall.  We used to have to make her respond to a "Hi Harlie" greeting by saying, "Hi" back. Every time a student would greet her, she needing prompting/instruction to respond or wave back.  This went on for YEARS.  Well, on Wednesday, I took her into Cooper's school to pick him up to go to swim.  While we were waiting for him a little boy came into the office.  She said hi to him - unprompted.  Then as we were leaving, she waved to a little girl in the hallway and then said, "Mama, I waved to her."  That girl seriously cracks me up.  She knows darn well that we've been working on that for years and she wanted me to know that it finally paid off.

I think she's really proud of herself.  Which is also why I don't want to put her in a class where she knows she doesn't belong.  She's smart enough to know that she's not on the same level and I think it would be detrimental and never ending.  Every year would be the same.  I think she has a way better chance of "catching up" if they put her in 2nd grade this year.  I know schools have a problem retaining kids more than once.  Typically kids get too big for the grade.  But, as luck would have it, that's not an issue for Harlie.  She is the size of a first grader, so she will still be on the small side of a 2nd grade class.

So, we'll see what happens.  My fingers are crossed that her team, and whoever is higher up in the chain that has to approve of going ousidet of the box, see that my requests are reasonable and in Harlie's best interest.

Well, that's it for this post.  Hopefully I'll have another post soon.

Thanks for reading!
~Christy xo

Wednesday, August 26, 2015


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.

Wednesday, August 12, 2015

Decannulation Day!

August 11, 2015

After a long day filled with lots of waiting, I got to pull out Harlie's trach, and not put a new one in place.  And after almost NINE years (or 3,242 days), and for the FIRST time in her whole life, she does NOT have a tube in her trachea.  And I finally got to post the beautiful words...

Meet the newest member of the Naked Neck Club!

Tom took a video of the "event."  He tried to upload it but it wouldn't work.  I'll share that once we get that done.

After knowing that we were going to be able to pull it, but then having to wait hours to do it, it almost felt anticlimactic.  But, I suppose that's not surprising, given that we have been dreaming of that moment for so very long.  I have no idea what I was expecting the moment to be like, but it would have been better if there were fireworks, or if confetti came down from the ceiling.  Is that too much to ask?! Darn it! I should have had Tom play some theme music at least!  But, we were just sitting there, waiting.  And then an ENT Fellow came in and said it was time to do it.  So, we stood up and just did it.

That was it.

I'm going to have to talk to someone about their celebratory policies, because they are seriously lacking!  Kidding, of course.

Here's the music we should have played:

The very first time I heard that song, I thought of this day - Decannulation Day.  And coincidentally, the American Authors JUST played at Innsbrook last Thursday and we got to go.  Kinda weird, right?  I chose to take it as a good sign that things were going to go her way.

Anyway, ever since the trach came out, she's been holding her throat.

There is a hole (stoma) now and a lot of air is escaping through it.  I think that feels weird for her (especially considering she was capped all day) to have no pressure there.  So, when she coughs, or sneezes, she presses the area.  Her voice is definitely weaker sounding, but that's because so much air is escaping before it makes it to her vocal cords.  She learned very quickly that she needs to press her stoma to plug it to make more air go up instead of out, which makes her much louder and easier to understand.

As far as her stoma goes, we spoke to her ENT about that yesterday.  He said that we need to give it some time to try and heal on its own.  But, it is very unlikely that it will close since she's had it so long.  So, he said he is okay with surgically closing it in the next month or so.  Of course, it would not happen that soon unless he gave us a date like right now.  So, I'll have to talk to him more about that before we leave.  He might not be able to schedule it until after he sees her again, which would mean a couple of months probably. We'll just have to see.

As far as closing the stoma, apparently it's not as simple as stitching the skin closed.  Since she's had it so long, a tract of scar tissue has likely formed from her trachea to the skin on the outside.  And to close it, he will have to actually remove that whole tract of tissue and then let it heal from the inside out.  One of the complications is that if the skin on the outside heals closed before the trachea, air can escape the trachea and go under the skin and into the chest cavity (I think that's what he said).  This is bad, and he says the method he uses is best to avoid those consequences.

Until then, she will still cough up secretions through the hole and she'll have to plug it with her finger to talk.  It feels like a step backwards, but I know she'll make big advancements once it's closed for good.  This also means no swimming or water slides.  This is going to be hard, because she is most excited about being able to go down a water slide.  She's actually less safe around water now then she was while trached and capped.  There's absolutely no protection now - and her stoma isn't small.  And clearly we can't put a waterproof covering over it, because that wouldn't allow air to escape.  I'm so glad that we already went to the beach!!!  I don't know what we'll do about the pool...

Anyway, a couple of hours after decannulation, Tom and I went to get some dinner.  Tom found a place within walking distance so we could go sit down and have a non cafeteria meal and a celebratory drink.

Cheers to all of you great friends and family for 9 years of support.
Please, go crack a cold one, pour a big glass of wine, or do a shot.
Today is indeed a Big Deal!!
I had some food leftover, so we brought it back so I could have lunch or dinner tomorrow.  I put it in the family room refrigerator and I felt a wave of PTSD ticks come on.

You're doing alright if you've never had to put food in a hospital family waiting room refrigerator.  Ugh.  Something about putting your name on a label with your unit number and date and then cramming it in with everyone else's food gives me the heebie jeebies.  Not to mention I've done it more than I want to recall.


It's now 2:30am and I need to try to get back to sleep.  It's been a restless night because her alarms have been going off a lot.  Her heart rate appears to be dropping pretty low.  Like lower than what her pacemaker is set to go.  So, that's weird.  They are aware and we'll have to see if an EP (electrophysiologist) can come and check it tomorrow.  It could be that the monitor isn't picking up some beats or something.  I don't know.

But, at one point I woke up to alarms and Harlie crying and coughing.  They were trying to change the monitor leads on her chest.  She's very protective of her arm with the IV in it and is always afraid someone is going to mess with it, so she fights if you're anywhere near it.  Plus, even though they were trying to tell her what they were doing, she couldn't hear them because she doesn't sleep with her hearing aids in.

Anyway, I had to get up and help out.  And it is SO freaking weird to hear secretions when she's coughing and know that I can't suction her.  Crazy!

Okay, I'll finish up tomorrow.



Nothing new to report since the wee hours in the morning.  Harlie is doing great - without her trach, so far.

The EP just came and made some adjustments to her pacemaker.

Here she is this morning, in her private room with her own bathroom, in the CICU (cardiac intensive care unit) enjoying her gifts (thank you Bill and Becky and Grandma and Pap Pap)!  She only tells me that she wants to go home about every seven minutes, so we're good!


I keep getting interrupted so this post is now way longer than I intended.

Since she's well, they let her go to the playroom in the Heart & Kidney Unit.  We saw so many nurses that have taken care of her in the past.  It was so great for them to see her up and healthy and talking!  She told everyone that she's eight and that she's going to be nine soon.  I can't tell you how awesome it is to hear her answer questions, get her wants and needs across and hear her observations about the world around her.

She's now telling me she wants to go home about every two minutes.  Just in case you were wondering.

It tickled me to see her walk back to her room from the playroom.

Don't you just love all the kid friendly colors?

Our social worker came by to visit, which is always fun.

Heather and Harlie
As you can see, she is still covering her stoma.  Between not using her hand with the IV in it, and this hand always on her throat, she has no usable arms.  Which has been interesting.

I went downstairs to go see a friend who is here for his child's appointment and get some lunch.  While in the cafeteria I ran into a friend from high school who is here for work and he bought me lunch.  How nice was that?!

When I got back upstairs to the CICU Heather told me that Harlie's cardiologist came by while I was gone.  She asked Harlie, "Where's your mom?"  And Harlie said, "She's downstairs."  I had to laugh.  She is so funny - no matter what she says.  Anyone who comes in her room to do anything leaves laughing.  Her nurse told me that while I was gone she pressed the call nurse button on the remote and when she came in Harlie told her that she needed more tape on her neck.  And that she wanted water.  So, that's the first time I'm aware of, that she did that.  Wow.  I can't tell you how great it is to know that I can step away and she can get help when she wants it.  Love it!!!!  Little Miss Independent!!!

So, overall, doing great here.  She knows she can't go home until tomorrow, but that hasn't stopped her from letting me know that she wants to go home.  She's very concerned that Rooney is missing me too much.

I have to go because Harlie needs some stuff.  And she has no problem letting me know it.

Thank you for all the love and support!  I can't tell you how awesome it was to look at Facebook and see how many of you were sporting We Heart Harlie tees, signs and love in general.  I am truly overwhelmed.  And it's been so fun to have you join in our celebration!  Thank you for caring so much about Harlie and our family!

Much love!!
Christy xoxo