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

Update

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

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

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

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

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

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

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

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

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

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

Much Love,
Christy xo

Here is what I started on a while ago:

August 19

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

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

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

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

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

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

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

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

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

And she got her echo.

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

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

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

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

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

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

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!!
~Tom

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.

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

7:00am

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!

1:15pm

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

Still waiting...

It's the BIG day!  We left the house right on time at 7am.  Traffic was a breeze and we checked in early (thanks to Tom).  Early!  What a time waster!  haha! Kidding!

Her ENT (Dr. Preciado) came in to chat with us after all the check in stuff was done.  He scared us a bit when he said he was thinking about having her sleep here capped for one night, then if that went well, decannulate tomorrow, then stay for a couple of nights.  ACK!!!  We went over the sleep study report a little and we told him we would rather decannulate today (of course).  He said he would do the laryngoscopy and we'd chat after.

Before he left I grabbed a picture.  Right after Harlie was born, they whisked her away and took her next door to Children's, where Dr. Preciado went into the OR with her and was able to intubate her.  He called Tom just a few minutes after she left and asked for consent for the procedure over the phone.  It was crazy.  He saved her life, so we dig him.

We met the two anesthesiologists who were on her case and they took her on back.  She just said goodbye, grabbed Mikey (her Teenage Mutant Ninja Turtle stuffed animal) and walked right on back - smiling the whole time.  She's such a brave girl.  And I love how incredibly independent she is becoming, despite receiving SO much attention in her life.

Knowing that it was going to be a quick one, we sat in the waiting room instead of going to get something to eat.  We probably waited about 20 minutes or so and they called us back to a conference room.

Dr. P came in and said that it went really well.  Her airway looks great, as well as her vocal cords.  He could see a big improvement since her last jaw reconstruction.

The only negative is that her mouth can only open a little bit.  And that has actually gotten worse.  Because she can't open her mouth, they couldn't get a rigid bronch to go behind her tongue.  And in the process of trying, they think they loosened one of her teeth.  He said that he would have likely knocked a tooth or two out trying to force it, so he didn't.  And in the process of the anesthesiologist trying to get lidocaine down there, he accidentally hurt her lip.  There's just not a lot of room to work in there.  Which, I totally understand given the struggle it is to get a toothbrush in there.

The reason in particular that her small opening is a negative is that she will not be able to be intubated through her mouth.  What scares me about this is if we're in a car accident or something like that, no EMT would have what they need to intubate her.  So, we're just not going to think about that, because there's just nothing we can do.  She can't live her life trached just for that.

So, he said he is fine with proceeding with decannulation TODAY!  But, he wants her to stay in the CICU for two nights, just to make sure she's okay breathing without it.  I am trying really hard to keep it together.  But, I feel like I'm on the verge of bursting into full on tears at any moment!

It is now 2pm and she is still in recovery, waiting on a room in the CICU.  Tom can't stay here for two nights (he has to work), so he's working on getting coverage for the boys, and the logistics of him going home and then returning to come and get us on Thursday.

So, for now we just sit.  And wait.  UGH!  We want to just reach over right now and pull it out.  Then throw it across the room!  But, we can't.  Just a few more hours, and it will be done.  I can't wait for that post!!!!

Thank you for all the incredible amount of love and support today!  I had to stop looking at Facebook because you were all making me cry!

Love to you all!
Christy xo

Have we done Harlie's LAST trach change????

Hi! I just want to post a quick one before our BIG day tomorrow!

First, I just want to say thank you, from the bottom of my heart to all of you who get what a huge big deal this is to Harlie, and to us.  I am always amazed and shocked at the crazy amount of love and support we receive from you before, during and after all of our big deals.  We are truly lucky people to be surrounded by all of you.  I will never be able to thank you enough...

Second, I DON'T KNOW WHAT TO DO WITH ALL THE EMOTIONS I'M FEELING!!!

It's so overwhelming!  I want to be SO excited.  And, I am!  But, this isn't our first rodeo, and we know first hand that things can go awry and that Harlie has never, and will never be, a textbook case.  Her ENT can go in there tomorrow and find something that's been there all along, but we never knew because of the trach.  And we could leave devastated.  It goes without saying that we hope that isn't the case.  duh.  But, that fear - and the instinct to protect ourselves - is there.  And that's what keeps us from being able to just focus on our excitement.

Plus, even though this is a day we have dreamed about for just shy of nine incredibly arduous years, I don't know what to do now that it could be here (well, tomorrow).  It's so hard to explain.

But, in the past, when I thought about it, it hurt because it just couldn't be.  So, I had to stop thinking about it.  I had to put it out of my mind and focus on enjoying life the way it was. But, now it's happening (or could be, see how hard this is?) and I've never thought past this moment.  I have no idea what it will be like.  What will she look like without that trach around her neck?  I've never seen her without it.  Except when she had heart surgery and they had to take it out because of infection risks.  But, she was completely OUT and she had A LOT going on, so it wasn't anything to enjoy.  Will her voice sound different?  Will she be okay?

The other day Harlie said she wanted to go camping.  I explained that we are going in the fall, that it's too hot now.  I went to the calendar to show her when we're going and she exclaimed, "Oh, that's too long!" So, she said she wanted to go "short" meaning sooner.  So, she picked a day and drew a tent on it (the 4th).  It was then that it occurred to me I had not even wrote her big day on the calendar.  I just circled it.

Crazy emotions, right?

Soon after we brought Harlie home for the first time, I found a support group on line for parents of trached kids (the Trach Board).  And after kids were decannulated (had the trach removed) parents would post a picture with something like, "Meet the newest member of the naked neck club!"

I can't believe after almost nine years of hearing the term "naked neck" that I could be saying those words.  Like, tomorrow.  Holy crap!

It's so surreal.

Good luck, my sweet Harlie Caroline.  If you enjoy life this much with the trach, I can only imagine how much you'll enjoy life without it.

God love her!

Well, I have to go now.  We have to get up early tomorrow and get on the road to DC.  Check in time is 9:30am and OR time is 11:30am.

Thank you again for all the love and support!  I'll be sure to keep you posted!

Much love,
Christy xo

Sleep Study Results!

Well, not totally true.  I don't have all the results.  But, I know the most important part.  This is what her ENT said in an email to me:

"Indeed it looked very good.  She did not have any observable sleep apnea!"

Hallelujah!!!

Almost makes me remember the night of pure torture, fondly.  Well, it was certainly worth it, that's for sure!!!

So, where does that leave us?

He said, "What we should do is schedule a direct laryngoscopy under anesthesia, to make sure there are no surprises.  Then we admit her to the PICU for decannulation and observation."

I'm sorry, did he say decannulation?!

HOLY COW!!!

Of course, we had to wait another two full days till we heard from them with a date for this laryngoscopy.  Seriously, I am going to run out of patience one day... even I don't know how I live like this!

So, I was sitting in Midas on Wednesday, getting the tires rotated and oil changed in my car, when I got a text from Brandy, "His office called with possible dates.  Call me!!"

I got their number from Brandy and called his office back immediately.  She gave me three dates, and I took the first available, Tuesday, August 11, 2015.

After going over everything, she confirmed by saying, "So, Harlie is scheduled for a direct laryngoscopy and decannulation with an admittance to the PICU on Tuesday, August 11th.  A nurse will call you on the Friday before to give you more information."

I could barely say, thank you and good-bye before I was full-on crying tears of joy!  And I'm not even embarrassed.  I think the guy sitting next to me was a little worried.  But, I didn't care!

After all we've put her through!!  After almost NINE years of breathing through a tube!!  We are scheduled for DECANNULATION!!!

I just can't believe it.

So, we have one more hurdle to clear - the laryngoscopy.  As long as there are "no surprises", we'll be home free.

I'm choosing to think positively.  I'm going to enjoy the fact that we are HERE.  So, so close.  Closer than we've ever been.  And considering the report showed NO observable sleep apnea, I'm thinking that's a really good sign.  The only thing that nags me is that one day, a while ago, her ENT said that she had large tonsils and adenoids, and that they may/may not have to come out.  I'm guessing that since she slept okay, maybe that's not an issue.  I guess we'll see.

More waiting... but we are oh-so-close.  And that's so freaking exciting!!!

From a critical airway to possible decannulation in just under nine years.  With over 45 surgeries in between.  I don't know how we've all survived.  I really don't.

Our sweet, sweet girl.

Her airway was so critical, that she could barely be moved for the first three weeks of her life.  No holding her, no cuddling, no comforting her.  Even before and after her first heart surgery, she just had to lay there.

So, I sat there, next to her, as much as I could.  I would touch her toes and stare at her.  And wonder what the hell was happening.  Still wonder that, sometimes.  ;-)

Three days old, the day before her 1st heart surgery.

This just proves how tough you can be, when you need to.  We've really put her through a living hell, and you know what?  She's still a very happy little girl, who still loves us very much.  Kids are stronger and so much more capable than people realize.

Thank God for that.  

And thank YOU for being there for us.  

One more month.... I. can't. believe. it.  

Much love,

Christy xo

Family Vacation at Lake Gaston

So much to update!

First, I can't believe that it's now been over SIX weeks since Harlie's sleep study and still no word!!  They said it would take between four to six weeks to get the report done.  Harlie's ENT asked for the report to be expedited.  Six weeks later, we are still waiting.

This report is potentially life changing.  We hope it's going to be life changing.  And we are still waiting.  Waited more than two months to get the appointment.  Waited over eight years to get to the point that we had the opportunity to wait for this report.  Crazy.  I just want to know!!!

Other than that, things are good.

We went on vacation a couple of weeks ago to Lake Gaston in North Carolina.  It was our first time there.  We normally go to Lake Anna. But our family has grown to 20 people, so we couldn't find a house large enough to accommodate us there.  Luckily we found a house at Lake Gaston, which is a larger lake, and is only an extra hour away.

This year, our family graduated to having to take two cars.  That was after packing "light."  But, with it only being two hours away, it wasn't a big deal to drive both cars.

Harlie did great.  And we couldn't help but enjoy how vastly different an experience it was versus last year's vacation.  Last year, she was on oxygen the entire time and had NO energy whatsoever.  She spent about two hours at the dock the entire week.  And to get her to the dock, she rode in a wagon since the walk was way too much for her.

But, this year, she could walk all by herself.  AND, she mastered getting in her float and in and out of the water ALL BY HERSELF!  No oxygen tubing, and she had plenty of energy to enjoy herself.  And, as if that wasn't enough - everyone got to hear her talk and could understand so much of what she was saying.  WOW!

A different vacation, indeed!  I can't believe how great she is doing.  Life is SO much better now and it's hard to believe we lived as long as we did in a whole different place.  We are so grateful!

Here are a few pics from the week:

Our family.

The dock.  And yes, I let my boys jump from the top.
All three of them.

One day, we were hanging out on the top deck and I got up to go check on Harlie (who was in the house).  When I came down the stairs, I looked in the water, and there was Harlie, floating in her tube, all by herself!!! She said, "Hi Mama!"  Oh my gosh!  I can't tell you how many heart attacks that girl has given me these last eight years!  Thank God she could get in and out of the water safely!

Our view to the left of the dock.

Our view to the right of the dock.

My view on the boat ride.
Happy guys on a boat.

REALLY happy guy driving the boat.

Tom letting Murphy drive.

And Harlie.

And Cooper.  This is the life. 

Me and my sister, Sandy.

Two happy kids.

Three happy kids. 

Harlie loves the pontoon boat.

Murphy and Charlie in a Harry Potter trivia contest.
Murphy won.

I sure do love this guy.

Me and Maggie.

Me, Kelly, Jordan and Maggie.

Harlie loves her cousin, Chase.
If he was awake, she was right with him.

Feeding the fish at the marina.

How Harlie floats.
This is when it pays to be tiny.  She still fits in an infant float!

Harlie's happy place.  This girl loves to fish.

Here are some videos:

Tom instigated a cooler water fight between Cutter and Charlie.  It was entertaining for all of us. Cutter is my sister's youngest and Charlie is my older brother's youngest.  They are hysterical anyway. 

I should have gotten some pics of my nephews.  But, I really didn't have my phone around much.  We had spotty cell service, at best.  So, I really unplugged for the week. It was so great, that I'm having a very hard time plugging back in!

Okay, well that's it for now.  I've been working on this post for weeks!  But, now with summer swim team in full force, I have even less time to sit in front of the computer.

Much love,
Christy xo

More on the sleep study

I'm thrilled to report that she slept all night with the cap on!

The night was a long and torturous one, though.  For me, I mean.  Every time one of the techs would come into the room, I was so afraid they were going to tell me we had to remove the cap.  I held my breath each time, and then they would say, "Just replacing an EKG lead" or something like that.

There were parts of the night I found unbearable.  For one, I couldn't see a pulse ox.  So, I had NO idea what her sats and heart rate were.  That was super weird.  In fact, it was so weird that my crazy imagination took over and I started to wonder if something happened to the techs.  What if they left and weren't watching her numbers?  What if only one was there and she passed out, had a heart attack or was killed by a jilted ex-lover?

Harlie would sound good for a few minutes, and I would relax.  Then she would sound bad.  Then good again.  Then bad.

Every time she would make a noise, I would will her to stop.  At around 3:30 am, I woke up to hear her coughing.  Then she made a lot of noise.  I wondered if I should get up and suction her.  But, I made myself stay put.  It was so incredibly hard.  Somehow she would settle down and the noise would soften.  Then I would breathe again and think, okay, it's going to be okay.

Then she would make a squeaking noise that I had never heard before.  And I would hold my breath all over again.  And I would look toward the door to see if footsteps were coming.  There were several times that I thought for sure they would come in.

It was awful.  And each minute crawled by.  Slower than the last.

I think I slept maybe two hours.  And I couldn't go back to sleep after 3:30 am.  Finally, just before 6am, the tech came in and told me it was OVER!!!

SHE MADE IT!!!  I made it!

That was the first night she ever slept while breathing through her mouth and nose.

The tech said she did "great" and that she slept "well."  So, I take both of those as good signs.  What's scary is that she said it printed out 1,000 pages!  That sounds like a lot of episodes to me.  But, what do I know?  Apparently each episode has to be scored, so it takes a while.  The WORST is that she said they are running at a 4-6 week time frame to get the data read and sent to the doctor.

I asked her if I should be hopeful, and she said she couldn't answer that.

Well, I am anyway.  I think things look good for a future decann.  But, we have to wait and see.  Her ENT said he would get in touch with me after he gets the report.

I personally think a few month's wait for the study, surviving the study itself, and then having to wait another 4-6 weeks for more information should qualify and cruel and unusual punishment.  As if the past eight years didn't seal the deal.

Oh, before I wrap this up... we told Harlie that we were going to the hospital to sleep there and why.  On the way up, she coughed and then screamed, "I need a doctor!"

Then, as soon as we got to the fourth floor and walked into the sleep lab, she started fake yawning and said, "I'm tired."  I guess she was trying to get in the mood.  She was so funny.  And so very good.  I know I talk about how hard things are - but she really does make things better.  She's so easy going and she has the best disposition for her life.

I'm so thankful for her and for where we are right now.  Thank you so much for all your positive thoughts and prayers!  I can't wait to be able to share more fabulous news.  In 4-6 weeks.  I'm so, so hopeful.

Much love,
Christy xo

Sleep Study Happening Now

Whew! It's been a busy weekend!  I will have to save the blog post about Harlie's triathlon for later tonight or tomorrow.  It went great, by the way!

Since the sleep study is happening now, I thought I would start with that.  First of all, I CAN'T BELIEVE WE ARE HERE AND IT IS HAPPENING RIGHT NOW!  After eight and a half years, we are finally here, seeing if she can breathe without the trach.  Gulp.

Our check-in time was 7pm. Now, I'm used to having to wait well past appointment times to see doctors.  I don't even want to know how much time I've actually spent waiting in a waiting room.  I'm sure it would be depressing.  However, I had NO idea we would have to wait for 1 hour and 20 minutes tonight!  Goodness gracious - knowing that would have certainly changed my schedule for the day.  In the least it would have made driving in heavy traffic to DC a little less stressful.

But, I have to shake it off and move on.

We got to our room at 8:20pm.  And she was done putting all the leads and stuff on her by 10pm.  I was pleasantly surprised at how well she did!  She fussed a little bit, said she was scared a couple of times, but for the most part was cooperative.

Just a few wires...

To put all over you, including your head...

Adding the nasal cannula was the hardest part.  She does not want it in her nose.  If it were Cooper or Murphy, it would have been up there without being asked.

Nighty-night, Harlie!

I think she's asleep now.  And she isn't making any noise.  I just hear air.  The tech said that if the numbers aren't safe for her that she will wake me up so I can remove her cap.  Clearly, that will mean she failed.  If she doesn't wake me up, then I guess that might mean she passed.  But, it takes a couple of weeks to get the final report.

I can't see her numbers, which is weird.  I'm so used to being able to see what her sats and heart rate are.

I am really nervous and am wondering how I'm going to go to sleep.  I may have gotten my hopes up too high.  I will be pretty so devastated if she doesn't pass.  I think that will mean that she will have to have another jaw distraction surgery before we can try again.

10:20pm, the tech just came in (I held my breath, oh this is hard!) to adjust an EKG lead.  I asked her what her sats are and she said upper 80s, so that's great.  She's not on oxygen right now.  They might need to give me oxygen if they keep coming in here to make adjustments!

10:25pm, I hear more air.  Not sure what that means.  This is really hard.

Please send us some good non-trach needing breathing vibes.

Much love,
Christy xo