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.

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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.

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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