Jaw Distraction Post Op Day 1

Hi,

Well, things are going okay so far, I guess. 

Yesterday, Dr. Resnick found us in the waiting room and told us that everything went as planned.  That means that he was able to put everything where he wanted it, which is a really good start.  He said that her skin is stretched really tight on her right side.  I think he said the metal is a little bulky under her skin, especially on the right.  But, I can't see that yet.  Maybe because she is a little swollen or just that there is a lot going on.   

They already came this morning to turn the screws.  There are four of them.  Two closer to her chin, and two closer to her ears.  They are only turning the ones closer to her chin for now.  They get one full turn, twice per day.  They will turn them for us until we are ready to leave the hospital, then we take over.  Here is the tool they use:

Back to yesterday, I can't remember if I mentioned that an ENT (up here they call them ORL for otolaryngology) came to scope her and change her trach at the beginning of the procedure.  We were told that when she scoped through her trach that her sats dropped surprisingly fast.  Not that big of deal in that situation, as they were uber prepared and she was healthy at the time and bounced right back when the scope came out. 

It just further proves that she has no airway if something were to go wrong with her trach.  I've been asked many times why we are doing this surgery.  And this is why.  Now we just hope that this works.

Also, while we were sitting in the waiting area, Dr. Mancuso came by.  He was the doctor that decided to send her to the OR for re-intubation (vs. attempting to do it bedside) two and half years ago.  That decision was life saving, for sure.  He said he will never forget that night, either.  He is such a great person and it was so nice of him to come find us to say hello. 

She stayed asleep most of the day.  I forgot to mention in my last post that in pre-op yesterday she said she was going to take a looooong nap.  Haha!  And that she did! 

The CICU asks that parents not come and go between 6:30-7:30, as that is when they have shift change and give report.  They don't want to be distracted during report.  Tom left earlier to walk some things back to the apartment.  And our friend Mike Cherock just happens to be in Boston for a few days (he lives in Pittsburgh).  So, he and Tom went for a drink.  At about 6:30, I left to meet them for dinner.  I tried to wake her up a bit before I left.  But, she wanted no parts of it and I didn't want to make her mad.  I would want to sleep through as much of this if I were her.  So, I held her hand and talked to her anyway.  I was hoping that she would hear some of it and know that I was there. 

I ubered to the restaurant because it was dark and very cold, and I just didn't feel like freezing. I just didn't have that kind of energy.  It was really nice to be able to see Mike and feel like ourselves again. 

Later that night, Harlie's nurse called me to ask a few questions.  She said that Harlie woke up and she asked for a mirror.  I said, "You could understand her?"  And she said she was talking a lot, actually and that she could understand her.  That was both surprising (because of the distraction device) and not surprising (her personality) at the same time.  And I was thrilled that communication won't be much of an issue. 

She said she cried a little when she saw herself in the mirror and when they changed her dressings.  But, that she was doing well, all things considered.  She asked me something about suctioning, and I said, "Oh, don't be surprised if she yanks the catheter out of your hand and suctions herself."  And she said, "Yes, she's already done that.  She's very good at telling me how she likes things done."  Haha! Then she said, "I love her."  While I felt terrible that we weren't with her when she woke up, I was relieved to know that she can handle her own when we aren't there. 

We had a better night's sleep last night - but I had several dreams about her recovery again.  This is really odd because I rarely remember my dreams.  One of my dreams was that I took her shirt off over her head and it got caught on one of the metal screws and caused her a lot of pain.  Again, all I could tell her was that I was so sorry, over and over again.  Clearly, I'm really sorry that she has to go through all this.  And I'm probably pretty nervous about taking care of all of this new stuff.  I just don't want to hurt her. 

Anyway, here is how she looked immediately post-op on Friday night:

And this is how she looks today.

Post-Op Day 1

Honestly, I don't think the pictures do it justice.  There are so many areas where her skin had to be cut open, or where metal is poking through.  There's metal outside and inside her skin.  And her skin is stretched so tight.  So far, she has complained about pain a lot.  Like all day. She told her nurse last night during her dressing changes that this was a nightmare.  Ugh.  She said this morning that she looks terrible and that she will never be happy again.  Of course we told her she will be happy again - in a few days or weeks.  She will get used to all this in time.  And so will we.  Then, in eight weeks, it will be gone.  And, please dear God let her have a better airway. 

They just rounded and they said they are not used to handling cases like hers.  This is a cardiac ICU, of course, so they don't normally get a lot of plastic surgery cases.  I love it when they are honest with me.  And I really love it when they are especially compassionate.  They really want to make sure that she's not in too much pain.  It is difficult because plastics probably doesn't have a lot of patients with her crazy history and medication tolerance.  And cardiac doesn't have kids who have this kind of surgery.  So, they are going to work together to figure out a good balance.  Her nurse told the docs that the meds they gave her last night (Morphine and Versed) didn't touch her. 

Ugh - this is definitely the most we have ever heard her complain.  She really is miserable.  Plus, she's on a bunch of pain meds and I think they are making her a little hypersensitive to silly things.  Like she kept on saying, "something is touching my ear" and it was the little foam dressing.  Odd that there are way worse areas of pain, but that she was obviously particularly annoyed by that.  Same with a bandage they put on her lower back (I guess they are trying to prevent a re-occurrence of her sacral ulcer?) She is so annoyed by it that it is hard for her to get past it.  Earlier she said this...

Harlie:  My heart hurts when I cough. 
Me:  What? (said with a confused look on my face)
Harlie:  Its a new thing. 

Despite her miserableness, she is still so funny. 

She got up into a chair today.  Look how happy it made her!

I tried to brush her hair.  That didn't go over so well.  They tried to wash most of the blood out of it yesterday, but it still smells like blood really bad.  If you don't know what blood smells like, you should consider yourself lucky. 

Now she's saying, itchy.  I'm itchy.  ITCHY!!! 

Oh, I don't know who is more miserable - her or me!  Haha!  I shouldn't joke - but oh Lord, if I don't, I'll cry.  This is what I'm hearing right now:

So ITCHY!  Make it stop!  

Oh, my chin.  

I can't stop drooling.  

How long do I have to have this?

When can we take the band-aids off?

ITCHY!

And to make things even worse - she can't wear her headphones.  Oh, the humanity!!!  So, we get to hear My Little Pony, Spongebob, Scooby Doo or whatever the heck she is watching at an insanely loud level.  And literally, she watched 5 minutes of each of those shows - fast fowarding periodically, so nothing they say makes any freaking sense.  So, it's just noise.  I think maybe Oxycodone is causing some of this... At least I hope that's the case, since she won't be on that for long (I hope).

And she can't wear her earrings.  I swear, this girl never has it easy.  Maybe after the initial hump and when pain is controlled, I can try to put them in.  There is just so little room between her ear lobes and the metal rods - especially on her left side.  Even though she has had her ears pierced for over two years, I wouldn't be surprised if they closed up.  If they do, I'll have them re-pierce them when they go in to remove the hardware in May.  That's already been scheduled - May 12th.  We'll have to do some "fun" count down thing for her. 

Honestly, for the most part, we are pleased with how she is doing medical-wise.  Her lungs appear to be good.   Her wounds are still oozing, but appear to be okay.  And she definitely has some spunk.  The biggest problem is pain management.  And it is getting worse throughout the day.   

When is this nightmare going to be over? Moaning...

My head hurts. Moaning...

I hate this. More moaning...

Her nurse went and talked to the team about her pain.  They are going to give her some anxiety meds, too.  And they are going to add something through her IV. 

I will be really glad when we have a week or two behind us. 

5:30pm - So, they just gave her a bunch of meds and then they changed the dressings, cleaned her incisions and changed her trach ties.  That took more than 30 minutes.  That is such a long time to be doing that.  But, she is less than cooperative and her kicking and moving the whole time makes it take way longer.  She is wiped out now and has taken off her hearing aids, put her sleep mask on and is trying to shut out the world. 

How much you want to bet that plastics will be here in the next 30 minutes to turn the screws?   

Well, I'm going to sign off for tonight.  Thank you for all the love, truly.  We appreciate every single comment and sentiment of support. 

Much love,
Christy xo