Home and adjusting

I started to blog on Sunday night.  But I was so tired, I couldn't finish.  This is what I wrote...

We are home.  While I am very happy to be here - I am lacking the energy and excitement that returning home from a hospital stay usually brings.  I'm finding myself sad that there is a "usual" feeling and that hospital stays are routine.  The weird thing is that even though we have done it countless times - I think this one is far from routine.

It is going to take us a few days to figure out what supplies and equipment we need and where it should go.  The matter of going potty is proving to be very difficult.  She was potty trained and seems to have no interest in going in her diaper.  But, putting her on the potty itself is out of the question.  So that leaves a bedpan.  But it is impossible to get her in an upright position.  And she's HEAVY.  And it takes two people to do most things with her.  I can't pick her up AND put a bedpan underneath her.

The positive is that we can get her upstairs and that she can sleep in her own bed.  And it is only a matter of time before she is not in pain from the surgery and gets more comfortable.

Right now, the negatives far outweigh the positives.  Usually I am pretty good about focusing on the positive.  And while I still have them in my head (she will be less crooked in two months' time and we're HOME) I cannot ignore the negatives.

Harlie is hurting and there's not a lot I can do for her.  She cries and I don't know why.  She is dehydrated, has no appetite, uncomfortable, in pain and confused.  And as her mother, I would do anything to be able to take some of that from her.  To bring her comfort, relieve her pain, something.  Anything.

I think about all she's been forced to endure and it makes me sick.  And tired.  And worried about what she's feeling and how she will cope with things as she gets older.

This past week was really, really hard.  I felt that she/we were virtually abandoned by the orthopedic docs at the hospital.  I felt stress where I don't normally feel it.  And thinking about how we're going to live for the next two months is overwhelming.

Blah, blah, blah... so that's what I started.  I do have a lot more to write about.  But, until I get my thoughts straight, I'll start with some pics of our last day in the hospital...

No, I will not smile or look at you.  I am mad at you. Go away please.

Getting final x-rays before discharge.
That's Orlando.  He's done many x-rays for us.  

For a little girl that's on her way home, she sure looks miserable.
She was mad we didn't take off the cast first.

The lobby in Children's National Medical Center.

On Monday she asked to play.

And even signed "I love you" to me!

Despite how negative this post started, she is starting to be more and more herself each day.  She's even laughed at some movies (Tangled, which is TOO cute, by the way, and Tom & Jerry) and eaten some food by mouth (I can't wait to write about that!).  

I have so much more to write, but I will have to do it tomorrow.

Thanks!
~Christy

We are going home!

WOOHOO!!!!

The only thing we are waiting on now is for the ortho folks to read her last x-rays (which we just took her down for a little while ago).  Once they do that, and the docs up here write all of her prescriptions, and we get a harness to put her in the car, we are free to leave!

YAY!!!

This morning she asked for milk and proceeded to down 4 ounces in like a minute - another thing that she has NEVER done!  She's not ever taken consecutive drinks from a straw - and she did it this morning like she's done it all her life.  What a nut!  How can a girl make so much progress when she is going through so much stuff?  That is so opposite from the normal.  Typical Harlie, I suppose.

Okay, lots to do, much excitement, gotta go!

Thank you!
~Christy

Good News!

We are going home!!! 

They took her pacer wires out and she has to stay for observation until 5:30pm, and then we are FREE TO GO!!!

Harlie is SO over this hospital stay.  She is fighting everything - even suctioning, something she deals with all the time, all of a sudden is too much.  I think she is just trying to regain some control over her life.  Who could blame her? 

And she's had another rough day.  They removed her chest tube dressings and removed the sutures.  They said that the spots heal better without the sutures in there (not dissolvable ones).  And one of hers was already looking angry and red.  But, in just starting to remove the dressing, the nurse practitioner had to call in for reinforcements.  Harlie was fighting - and HARD! 

After that she took out the pacer wires.  Earlier she had the Holter monitor removed.  All the stickers everywhere have thoroughly pissed her off!!!  She hates those things! 

Then came the removing of her IV.  They had so much tape around it, that was agony!  But, once it was out, she felt so much better. 

Last night she made me a bit nervous (only in that I thought maybe our discharge today could have been threatened).  Her nurse didn't like her high blood pressures and her high respiratory rate.  So, she called the resident and after going over some things she guessed that she was probably just in pain.  Which really made total sense.  Duh.  So, they gave her some Tylenol and took her blood pressure a little while later, and it was fine.  Whew! 

I think she realizes she's going home.  Tom took the train up this morning and checked us out of the Ronald McDonald House.  When he came back up to her room she saw the stroller.  We haven't gotten her dressed yet, but that is going to happen as soon as I get back to her room after finishing this post.

I will have to go into more detail later, but the Holter monitor showed that she is staying in Junctional Rythm.  They said that right now it is fine and that she could possibly stay that way from here on out.  Or it could resolve itself in time.  Or her heart rate could start to slow down and then action would have to be taken.  I think a pacemaker would have to be hooked up if that's the case, but don't hold me to that.  This is new to her.  It began after surgery.  So, we will follow-up with her home cardiologist in the next few weeks and do another 24 hours on the Holter monitor.  Then I think she will have to go back for regular tests and exams until they determine what (if anything) needs to be done. 

Wow.  Post-op day 9!  I can't even begin to explain how I'm feeling right now.  The thought of going home and having the Fontan behind us is surreal.  And it brings tears to my eyes.  It is a relief I just can't put into words.  We made it and she is amazing. 

Okay, gotta go home!!!!  I can't wait to see her mood change!

Thank you again for all your wonderful prayers, comments, and support!  Being up here can feel so isolating.  Your comments and messages are so wonderful to receive.  Please know I am so, so grateful!!!

Much love,
Christy

We're Home

We were discharged shortly before 10pm last night.  And we got home a little after midnight.  That stretch of road between here and DC is always heavily traveled - no matter the time.  There was a lot more traffic than we expected.

Harlie watched a movie (Monsters, Inc. is her current favorite) on the way home and then when it was over she passed out.  When I got home and opened all the doors and the car lights went on, she didn't move.  Tom took her out and she signed "night-night" three times going upstairs.  She was one tired little girl!

And now, so am I!  And I have a killer cold (Tom says it's a stress cold).  Anyway, I feel awful.  So, Harlie and I are just going to chill today.   My friend Sarah still took Cooper today to give me a little more of a break.  Sarah's son is the same age as Cooper (only a week or so apart) and they had a blast playing together yesterday.  Thank you so much Sarah!

I have more to tell you about - and I have some pictures.  But, I'll have to do that later.  Just wanted to let you know we are home and Harlie is happy.

Thanks for all your support!!!!
~Christy

Guess What?!?!?!

We are going home!

We just have to wait for her dose of antibiotics to finish (another 18 minutes) and we are outta here! Woo Hoo!!!!

She is SO ready! I made the mistake of pulling her clothes out and she ripped all the leads off her chest and disconnected her pulse ox within seconds!

She keeps on pointing to her PICC line and signing "off" but that can't come off, obviously. Six more weeks, sweetheart.

Well, we have some packing to do - so I have to go. I'll update more later. Just wanted to share the exciting news. For some reason (gee, I wonder why) taking her home means so much more to me. I am just so, so thankful. Words will never express just how grateful I am to have her. She laughed out loud while watching Cinderella today and I wanted to cry. It was the sweetest sound I've ever heard.

Thank you for all your support!!!
~Christy