Jaw Distraction Post Op Day 2

I had a rough time getting up this morning.  Tom offered to go to the hospital and let me stay in to sleep a bit more.  So, I got to move more slowly, which was really nice.  I forgot to mention that when Tom went to go get a better bottle of wine the other night, he returned with some flowers, too.

So, I got to drink my coffee, listen to some music and look at some pretty flowers before I got ready to go to the hospital.  I really felt daylight savings this morning. 

Anyway, how's Harlie?  Well, she's a different girl today.  She has hardly spoken a word. In fact, she has only answered questions with one word answers.  Sometimes, she doesn't even answer at all. No complaining - at all.  She's not even itchy. 

Ain't that something?  This feels worse than her complaining all day!  At least she had her personality.  I asked her how she was feeling and she slowly put her hand to her trach and whispered, tired. 

Tom said that they wanted her to sit in the chair for a little bit.  She protested, but then gave up.  Then she fell asleep. 

She's been pretty much sleeping all day.  I don't think she had a great night last night.  Her nurse said she woke up a lot throughout the night. 

Her blood pressures have been high (she normally runs low).  They were going to increase one of her meds for this, but gave her Ativan for anxiety and her blood pressures came down. 

So, I don't know if she's quiet because of the Ativan or what.  I can tell you she is NOT like herself at all.  If she were like this at home, I would say she's coming down with something.  But, again, we aren't familiar with Ativan.  They are going to decrease her next dose to see if that helps. 

She could also be mad at us.  Or really sad.  Or both.  Ugh. Our poor girl.  This is so hard!

They are sending her to the floor today.  I'm trying hard not to stress out about this.  Typically, when the floor is mentioned, I start arguing to take her home.  At home she can get one on one nursing - totally not the case on the floor.  But, I can't really think about taking her home yet.  She is definitely not ready.  And plastics hasn't even released her yet. 

Plus, when we leave, I need to get her to the airport, on a plane, then home.  That can be tiring for healthy people.  Plus, going through the airport and getting on the plane is going to be hard emotionally.  We get stared at on a good day. 

I remember when we left Boston Children's after her last distraction surgery in 2013.  A girl standing in line with her parents in front of us started crying as she stared at Harlie.  I get it.  It isn't every day you see a girl with this kind of head gear (plus the trach, wheelchair, good lookin' parents, etc.).  Haha! We're going to look like celebrities gone wrong walking through the airport.  Oh, grant me strength!  And please let people be kind! 

So, thinking ahead, I thought I should start to get used to taking care of her and all her stuff.  Plus, I was hoping that me cleaning her wounds would make her more comfortable.  I have to clean her trach wound all the time at home, and she is really good for me when I do it.  So, her nurse let me take the lead.  It was not fun.  I wouldn't say she was good with it - but she was better than yesterday. 

So, it looks like she is being moved to the cardiac floor around 6pm tonight.  Now I just pray that she gets a private room.  After spending years of our lives in the hospital, I think we should have some kind of pass that grants us only private rooms from here on out.  Honestly, every hospital should get rid of shared rooms anyway. 

Whew! She got a private room!  Her nurses just said that it is a nice room, too.  So, she will get moved soon. 

She is settled in her room now.  And it is a nicer, quieter place to hang out.  There's even a small fridge in there! And we have our own bathroom, with a shower.  One of her nurses today said she remembered her from two years ago. 

Tom went to dinner with Mike (he leaves to go back to Pittsburgh tonight) while I stayed with Harlie to get her settled.  Her nurses took out one of her IVs (it stopped working) and she wasn't happy about that.  Her nurse tried to distract her by asking her what her favorite movie was.  I had to coax her to try and answer.  When she did, it wasn't anything understandable.  Then she signed "Where's Daddy?"  So weird.  She hasn't signed that in years.  She has NO energy to speak at all.

I'm really hoping that tomorrow will be a much better day with that Ativan out of her system a little.  They are going to cut her dose in half tomorrow.  Plastics came by to turn her screws again.  She handled that pretty well, all things considered.  Maybe she was too tired to fight.  I took this picture before he came tonight, but here is her chart. 

So, we have a ways to go. 

She is really, really miserable.  I just keep telling her that each day will get better.  And one day, all of this will be behind her.  But, oh boy, today sucks so bad...

Her night nurse came in and I asked her how many patients she has and she said just two.  Whoa!  That is awesome.  And she said she's an ICU nurse and is floating to the floor tonight.  What luck!  So, she told us to go back to the apartment tonight and get some rest.  Tom is flying home tomorrow.  And he will come back next weekend (or earlier if need be). 

Well, that's all I have for today..  Thank you for all the love!

Much love,
Christy xo