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