Post-Op Day 4

Friday, November 1 (Post-Op Day 2)

We flew home Friday afternoon.  I was thinking that would be the worst day as far as swelling goes.  But, I was wrong.  It was Post-Op Day 3.  Anyway, this is how she looked right before we woke her up on Friday morning.

Post-Op Day 2

 This is her at the airport.

Post-Op Day 2

 She was in a great mood.  Very playful and cooperative.  I guess she was excited to be going home.  We definitely got some stares at the airport, but it wasn't as bad as I was expecting.  After I took the picture of her above, she wanted to take a picture of us...

  

 We couldn't fly Jet Blue like we normally do because their ticket prices were crazy expensive.  Over $250 MORE per ticket than US Air!  So, we flew a tiny plane home.  It was the kind where you had to walk on the tarmac then go up the stairs to get in the plane.  Harlie thought it was great.  They let us board first and gave us the first row.  At first, we had three separate seats on the plane, which clearly wasn't going to work.  So, they put me and Harlie together and Tom was just a few rows back.

The good thing about the smaller plane was that Harlie could stay in her seat AND look out the window at the same time.  She can't do that on the bigger planes.  So, that worked well.  She spent a lot of the time looking out the window...

The flight attendant was very nice and asked me several times during the flight if we needed anything.  And during the flight a lady in the seat behind Harlie tapped my shoulder.  I turned around and she handed me this piece of paper...

She said she drew it for my daughter.  She said her daughter is five.  So, I told her why Harlie looked like that and she was very nice, too.  Obviously she was wondering.  Which, I totally understand.  I would wonder, too!  Then she said that she could tell we take very good care of her.  I love nice people.  They make the world a better place.

My Mom and Dad picked us up from the airport.  When we got home the table was already set and the food was in the oven.  Grandma and Pap Pap had dinner all ready for us.  It was such a nice way to come home!  I had at least three helpings of everything.  I don't know why I was so hungry!  Then I fell asleep on the couch while the boys were going crazy.  That is so NOT me!  I was so tired!

Saturday, November 2 (Post-Op Day 3)

I had to force myself out of bed.  Cooper had a soccer game at 9:30.  I got out of bed at 9:10, brushed my hair and teeth and then took him to his game.  Inside, I was still asleep.  I am a terrible soccer mom.  But, I am cutting myself some slack.  Everything about me was exhausted.  Inside and out.  Brandy was working that morning and as soon as we got home, I went up and took a nap until she left.

After that I was still feeling very run down.  But, I got through the day.  Harlie was fine.  Really, she was.  Here she is playing outside for a few minutes...

Post-Op Day 3

In this pic, you can see how far her bruising goes down her chest.  Isn't that crazy?

Post-Op Day 3

 I took some pictures of the incisions (under her jaw) but they are pretty gross.  So, I will spare you.  She's still bleeding a little.

I took Harlie and Rooney for a walk that afternoon and came across a guy walking his dog.  Of course we had to stop and let the dogs say hi.  He saw Harlie and said hi to her and he did such a good job of not freaking out.  But, I couldn't stand the thought of him not understanding, so I told him that she just had surgery and that's why she looks like that.  He was very kind to her, and to me.

We had some friends over for dinner that night.  And when Marcy saw Harlie, she gave me a big hug.  Which was really nice because it is hard to see her look like this.  And I really appreciated her honesty.  I know people want to make me feel better by telling me she looks good.  But, I think she looks horrible.  And my stomach hurts when I look at her.  Even when she's smiling.  In fact, I think it hurts more because she is smiling.  What a brave, resilient girl she is!  I am the one who is weak now.  I think I need pain meds more than she does!  She can look at her picture and her reflection in the mirror and it doesn't bother her at all.  I'd give anything for her to talk to me and tell me what she's thinking.

Anyway, Marcy said at the end of the night that they had to go because I looked so tired.  I was exhausted.   Like not myself exhausted.  Yet, Harlie was up and running around, playing and smiling, and not complaining at all.

I got a good night's sleep and woke up feeling MUCH better, and much more like myself.

Sunday, November 3 (Post-Op Day 4)

Harlie is still happy and not complaining.  I put her hair up in two bows because her hair keeps sticking to her incisions (they are still bleeding a little).

Post-Op Day 4

 As long as her incisions are bleeding, I am not sending her to school.  And even with the bruising, I don't want to send her.  They are out on Tuesday for election day, so I guess I'll see how she looks then.  I think that bruising is going to be there, changing colors for a while.  So, I don't think I can keep her home the whole time.  I'll just have to think it over.

Anyway, Tom took the boys for a bike ride this morning and I took Rooney for a long walk, while Brandy came over to stay with Harlie.  Tom and the boys and me and Rooney met up at our local Starbucks to see a bunch of our running friends.

I am still nursing my piriformis injury, so no running for me yet.  I was making good headway on it until we went to Boston.  But, at least I can see the light now.   I have been seeing Rob Green at Active Chiropractic for a few weeks now.  He gave me some exercises to do and I get e-stim when I'm there.  I've gone several days with zero pain, and that's a first since July!  So, I'm very happy about my progress. I am going to be smart about this and not jump back into running too soon.

Well, that's about it for now.  As always, thank you so much for all your love and support.  Without it, we'd be mush for sure.

Much love,
Christy xo

Post-Op Day 1

Funny that Post-Op Day 1 is also Discharge Day.  I suppose there's a first time for everything.  

We are back at the hotel now.  And while Harlie is smiling in the following photo, she is GRUMPY.  Whew!  The swelling is getting worse.  Tomorrow should be the worst day and then it should start to get better after that.  You think I would have been prepared for that, wouldn't you?  But each time we do this, I'm always shocked.  I guess I block this part out of my memory.    

Health wise, I think she's doing well.  We took the Vest to the hospital and were able to keep her Vest treatments up, which I think helped a lot.  We can't get the incisions wet for 48 hours.  But, her hair had so much blood and goo in it that I had to wash her hair.  So, I gave her a quick bath (without getting the incisions wet) and she protested.  A lot.  I felt so bad because I so wanted to give in to her and not make her take a bath.  But, I couldn't live with her hair the way it was.  She HAS to feel better now.  Right?  

The only thing that makes me a bit nervous is that she has been bleeding a bit since we left the hospital.  I'm thinking it's from the trach collar since she's been moving around a lot more now that she's not in a hospital bed.  

So, since I forgot about the swelling, I forgot that she wouldn't be able to swallow.  Again.  Sometimes, I think we are being tortured.  We get through something so horrible, just to have to go through it all over again.  And again.  Sigh.

Anyway, as far as how the surgery went... it went well.  She said that the new bone that grew looks good.  There's no sign that the infection did any damage.  But, just to be on the safe side, they are leaving her on the antibiotics for one more week.  

So, as far as her jaw goes, we are done for now.  Her surgeon wants to see her next summer.  But, that's it.  Now to get this oxygen thing figured out... 

Anyway, here are some pictures from the last few days...

Harlie and I right before surgery.

They let me go with her into the OR.  She no longer needs Versed to help her go without being upset.  She just goes.  She cried a little bit right before we left and I asked her if she was scared and she nodded her head yes.  I just told her that it would be a quick one and that we'd be right here when she woke up.  That seemed to do the trick.  It was a quick one, so hopefully I am building up some trust with her.

I had a hard time sleeping the night before surgery.  I was so, so tired that day.  And since the Red Sox were playing that night, I knew it would be another long night.  So the second she got moved to the cardiac intensive care unit (CICU) and I saw that "bed" I jumped at the chance to close my eyes for a minute.  Or an hour and a half.

Being in the hospital will suck the life right out of you!

We brought Harlie's Vest and did her chest PT.  This was the night of the surgery and she fell asleep while getting it.  So, I guess it can't be that bad.

This was the morning of post-op day 1...

Post-op day 1

On Tuesday, we went to the aquarium.  It was great!  There was hardly anyone there so it was very comfortable.  It's the longest she's ever lasted there.  And I know it was her best time there.

Watching the sea lions and seals.

And for the first time she actually touched stuff!  Every time we've ever been it has been so crowded in the touch tank area, that Harlie didn't want to go in.  Well, this time, there was plenty of room.  And the girl could go and get things for her to touch so Harlie didn't have to move all around.  Harlie touched everything!  Some things she needed a little coaxing.  She touched an urchin, a crab, and a starfish.  And then we went to the new stingray/shark tank.  And she touched a stingray.  It was so cool to see her having such a good time.

The top of the big tank.

After the aquarium, we went and had lunch and drinks at a restaurant nearby.  Then we went to the carousel.  Harlie really seemed to enjoy it.  I loved that she loved it, but it made me sad.  All I could think about was how much I wish that her life could be more of those experiences than hospital ones.  This was surgery #40.  I think I might be getting tired of doing this to her.  I think we are all ready for a break.

The night of her surgery was the big Red Sox game in Boston.  We went to dinner and watched the game from there.  The restaurant was about three blocks from Fenway.  It was a lot of fun to be in the middle of such excitement!  Oh, life in a big city.

The bartender opened up a bottle of champagne and I took a hit right into my eye!  It was still fun, though.

The streets were packed.  They actually barricaded all around Fenway so you couldn't walk closer.  If you look in the background of the next photos you can see the building in the background with "GO SOX" in lights.  Pretty cool.

That's it for now.  We are flying home tomorrow afternoon (Friday).  I'm a little nervous about people staring at her tomorrow since it will be the worst day of the swelling and bruising.  But, we'll get through it.

Thank you so much for all your kind comments, posts, thoughts and prayers over the last few days.  It was so much fun to see all the photos on Facebook.  Thank you for taking the time to do that for us.  We are feeling the love and it is helping us stay strong.

Much love,
Christy xo

Ouch!

Remember my post about our Norfolk trip and the blood draw?  Here's what her arm looks like a week later...

I told you it was ugly.  I will be glad when that's gone.  


Goodnight!
~Christy