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