Wednesday, August 26, 2015

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.


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!!
~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


Tuesday, August 11, 2015

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

Monday, August 10, 2015

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