Thursday, December 19, 2013

We are fine.

Hi all.  I feel the need to let you know that we are doing fine.  We made it home Saturday night - after a very yucky, rainy, dark drive home.  Waiting to be discharged on Saturday truly tested my patience.  But, I guess that's the way it is when you're trying to get OUT of the hospital.

We had a friend's Christmas party that night.  I wondered if we could still pull it off - time-wise and spirit-wise.  I just didn't know if I could go and "party" with all of this heaviness on my mind.  How could I have a normal conversation?  And what if they would rather us not come since we might bring the mood down?

Well, it went great.  We walked in and my friends gave me hugs, compassionate looks, smiles and a drink.  And everything was fine.  We had a great time and it was exactly what we needed!

Me, Michelle, Carol and Amy

Tom and me

Thanks Bert and Amy for having us!

When we are in the hospital, I am forced to view Harlie from a medical perspective.  To see her "on paper" is very different than who she really is.  And I am always anxious to leave the on paper version at the hospital, so I can see the little girl she really is, again.

Somehow, when we get home, and she returns to being the happy little girl she is, everything just seems better.  Even if it's not.  Yes, I am still very disappointed in Friday's information.  But, I have to tell myself that Harlie is still the same person she was on Thursday.  Nothing has changed, except we know more than we did then.

I find myself wishing I could ask some tough questions and get some answers.  Here's what I really want to know:

1.  On a scale of one to ten, how bad is this?
2.  If her pressures don't improve with intervention, how long till things get worse?  One to three years?  Three to five?  Five to seven?  WHEN?!?!?
3.  If she went from being on room air, no Lasix, small dose of Enalapril, walking at school to being on oxygen, adding Lasix, adding more Lasix, doubling the Enalapril and needing the chair at school, in one year - what will the next year bring?  The year after that?

But, I won't get those answers.  Not now anyway.  I have to take a deep breath, focus on the now and wait for more tests and the information they provide.

The first thing we have to do is to get a sleep study.  I always thought that when we finally did a sleep study, it would be to find out if she could be decannulated (removal of the trach).  I can't lie - knowing that's not the reason, hurts.  We've just been so focused on fixing her airway problem.  And at this very moment, that doesn't matter anymore.  But, maybe that will change in time.  I hope so, anyway.

We are also experimenting with her oxygen and her sats.  You might remember that the doctor said that if she could tolerate low sats, we might be able to have her be free from the oxygen during the day.  Or at least parts of the day.  And then put her on it at night.  It seems so far that she hangs out anywhere from the mid-70s to the low 80's.  She used to be high 80s to the low 90s.  :-(  Still trying to figure out what I want to accept and what I'm comfortable with.  

For the most part - I am fine.  Really!  I definitely have my sad moments.  But, I am working hard to focus on the positives of now.  I think one of the things that makes me sad is that we can no longer be "carefree" and fun.  We use to be like that - eight years ago.  The reality of it is that a lot of the fun stuff we see other families do - especially at Christmas - we just don't have the energy to do.  Our priorities and how we get through the day is different.  And, for the most part, we've been alright.  It's just harder this time of year (and summer - summer is tough, too).  And I know that no matter what the future holds - we will never be the people we were before Harlie's birth.  But Friday didn't change that at all.

But, Harlie is happy.  And she is doing really well in other ways.  Her expressive growth the last few months has been amazing.  For example, the other night a friend asked Harlie if she was excited about Christmas.  Harlie immediately responded, "Yeah."  Then she asked her what she wanted Santa to bring her, and Harlie immediately said, "Presents."

There are a few small miracles there:

1.  She immediately responded to questions.  Her response time is appropriate - and that is a HUGE jump forward.
2.  She said "presents" a word I've never heard her say before.  And I had no idea what she was going to say.  I have been speaking for her for seven years.  She spoke for herself - without my help.  Another HUGE jump forward.

The next morning, I wanted to show her nurse this new skill.  So, I asked Harlie the same question - What do you want Santa to bring you for Christmas?  And she said (and signed at the same time), "play-doh."


Well, I wasn't expecting that!  So, again she spoke for herself!  Without my help!  HUGE!  When her teacher came that afternoon, I told her about our "conversations."  She asked Harlie, too, just to see what she would say.  Harlie said, "play-doh" then her teacher asked, "What else?"  And Harlie said, "ice cream."  Well, I know what she means - she wants the ice cream machine play-doh set.  She has pointed at it every time the commercial comes on.  She has been such a good little girl this year,  I'm feeling pretty confident that Santa will not disappoint.

Here's another thing... her and Cooper have been playing so well lately.  And they look so darn cute because they are the same size.  Anyway, yesterday, they were on the couch, playing Minecraft together using two separate devices.  Their conversation:

Cooper:  Harlie, I gave you some gold.
Harlie:  Gold?!
Cooper:  Yes, I gave you a chest of gold.
Harlie:  Chest of gold?!
Cooper:  It's right there.
Harlie:  She found it and laughed.

Seriously cute stuff.

I know this is what you would hear from a two-year old...  Makes it indescribable to hear it at seven.  Who knows what else is in that head of hers!  And if she's made this kind of progress in just a few months, where will she be a year from now?

Focusing on the positives...  Will deal with the negatives as they come.

We are fine.  Really.

Thank you so much for thinking of us, writing to us, reaching out, praying for us, buying shirts (which will be sent out today - sorry for the delay!) etc.  We are more grateful for your support than you will ever know.

Much love,
Christy xo


Beverley said...

Leyda was around 80 for months....then we added O2 and improved a bit. Then, eventually, she was around 80 on O2. Harlie sounds like she is doing well....enjoy!

Anonymous said...

Have a very, very Merry Christmas. I am so amazed at that sweet little girl. I know she has been a great little girl and Santa has him on his special list. Every little advancement is another hurdle for her and I know that you never take it for granted. God bless you and your whole family. Pittsburgh sends love, hugs and many prayers. Sue and Ron Minkus

Betsy said...

That is beyond amazing! I'm so very happy that you have at least a few positive things to look at. She is an amazing little girl!

Josie said...

I've been thinking about y'all and praying for answers! So glad to hear that you're hanging in there!! Random question, can she be on Viagra or Cyalis? Viagra was an awesome bridge for Claire and Sydney is still on hers ~ definitely helped with the pulmonary hypertension. I know that's not necessarily Harlie's issue, but wanted to make sure to ask. Wishing you a Merry Merry Christmas and loving all the spunk your girl continues to show!!

Susan said...

Loved seeing you get your groove on, on Facebook, so cute your outfit and all. Love that you are having fun with your friends even while your heart is heavy. Thanks for the t-shirt(s). We (Heart) Harlie and the whole Holton family. XOXO. Merry Christmas at the "happiest" time of the year. ;) Susan