PMV and Cardiology News

I don't have a lot of time tonight, but wanted to give you a quick update on how things are going...

Harlie is doing GREAT in school!  She started seeing her Hearing Impaired (HI) Teacher between 9:30 - 11am.  She gets instruction with another little girl from her class.  And they have older HI kids come in to sign with them, too, which is pretty cool.  And since it is just Harlie and her friend, L, it is good, concentrated instruction.  Both Jennifer and Brandy have said that it is awesome to see Harlie engaged, participating, learning and having fun - all at the same time!  This instruction just started on Monday and already I've noticed a big difference.

One BIG, ENORMOUS, HUGE change is that she has worn her PMV for HOURS, ALMOST ALL DAY for the past TWO days in a row!!!!!!  A PMV is a one way valve, that allows air in the trach when you inhale, but doesn't allow air out the trach, forcing the air to go up through the vocal cords and out your mouth and nose.  Here is a quick video that explains it.  And here is a video that explains the benefits of wearing one.  Pretty amazing stuff.

We have been trying to get her to tolerate a PMV for years.  But, with an upper airway occlusion (her jaw blocking her airway) a PMV is not an option because air can not get out through the mouth and nose.  After her first jaw reconstruction in June of 2008, we did get some PMV use out of her, but she's never been able to wear it for any substantial amount of time.

Until NOW!!!

Brandy put on her PMV at the beginning of her HI class and she wore it for HOURS straight!  We couldn't even get it on her prior to then!!! And in two days, she's wearing it almost ALL DAY!!!!

Don't get me wrong.  I think this is a WONDERFUL, AMAZING move forward.  However, I cannot think/believe that it will be smooth sailing from here on out.  If only.  So, when I went to pick Harlie and Brandy up to go to Harlie's cardiology appointment on Tuesday and  Harlie was wearing the PMV, I couldn't believe my eyes!!!  I was speechless.  I thought I was going to cry tears of joy.  What an accomplishment!!!  If she were to wear her PMV regularly, we could hear her voice!  We could hear her laugh!  We could hear her cry!!!  Wouldn't that be AMAZING?!?!?  But these are things I don't normally let myself think about.  And the emotions of feeling all that left me spent later on that night.  It wiped me out.  Feeling those kinds of emotions takes a lot of energy!  And I KNOW it won't be that easy.  It's never that easy.  But it is a start.  A wonderful, wonderful start!!!

OH!  And she is learning to write her name!  Very cool stuff!!!

As far as her cardiology appointment - it went well.  They did an echo (ultrasound of her heart) and things look the same as before (which is a good thing in that things aren't getting worse).  She has some leaking where she had surgery in June of 2009.  That was when they created another way for blood to leave her heart to go to her body.  So where they did that, some blood is leaking.  So far it is a mild leak, so we will do nothing until it becomes worse.

Her oxygen saturation levels (sats) are definitely getting better - they are in the mid-80's now, which is a great improvement.  We are so happy about that!

She has been dropping her heart rate at night.  The pulse ox alarms when the heart rate drops to 50 bpm or less and we have had to change that to 45 to get it to not alarm each night.  That is her junctional rhythm coming into play.  Her doc says that she is fine when she is up and active during the day, but at night when she sleeps, junctional rhythm happens more easily.  I'm not doing a great job explaining it, but it is late and I am tired.

The most important thing to know is that when she goes into junctional rhythm, her body recovers in time and her regular, irregular heart beat comes back.  So, again, we will do nothing until it becomes more of a problem.  She already has the pacemaker leads connected and ready to go - but being paced has it's share of issues - so it isn't something you want to do unless you have to.  For right now, she is fine and good, her doc is happy so we are happy.

To update you on Cooper and gymnastics... I had them credit our account so Harlie can use it for the next session.  He is not going back anytime soon.  He is just not ready.  He needs a big open field where he can run.  Not a gymnastics room.

Okay, there's more, but I'm done for the night.  I hope you have a good one!

Thanks,
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