Wednesday, January 2, 2013

Doggie school and sleep study stuff

Rooney graduated from beginner's puppy school today.  He did great.  Today they had to show all their newly learned skills.  He can now sit, lay down (we're still working on perfecting that one), leave it (he's a pro at walking away from something he wants to put in his mouth), 30-second stay while sitting, drop it (when playing with a toy), loose leash walking, and come when called.  The things we're still working on are sitting politely when greeting, shake and speak.  I don't care much about the shaking or speaking.  But, I do need to get working on the greeting thing.  But that's such a hard one!

Anyway, here he is with his cap on...

He wasn't a fan of the hat.

He's such a good sitter!
I signed him up for the next class - intermediate training.  He'll learn to ignore distractions and some other cool stuff.  We hope, anyway!

Changing subjects, Harlie is getting sick.  She's coughing like crazy and requiring a ton of suctioning (which is never a good sign) and she has a lot of thick secretions.  Her nose is running, and she wants so badly to blow it.  So she asks for a tissue and then makes a sound like she's blowing her nose, but she's really not.  She's never been able to blow her nose.  With the trach, you can't build up the pressure. Unless she's wearing the cap, but then she just blows off the cap.  Oh, it's the little things...  Her oral feedings are not going well (she has a really hard time eating orally when she's trying to manage increased secretions).  Ugh.  Wouldn't you know it?  She has four days to get better before school.

And I don't even want to think about what this means for her upcoming capped sleep study.  I am trying really, really hard to just let it go and let it be whatever it is supposed to be, since none of this is in my control.  But, it is hard.  Really, really hard.

Let me see if I can explain it simply and without 5,000 words...

Her Boston docs want her to have a sleep study before they will schedule her next jaw surgery.  If she passes the sleep study (can sleep without problems while wearing a cap, which means the trach is closed off, and all her breathing is done through her mouth and nose) then she could potentially be decannulated (have the trach removed) and she wouldn't need surgery until she begins to have breathing issues.  Another jaw surgery is inevitable (in fact, they've told us several are most likely in her future).  The bone they put in her jaw will never grow at the same rate as the rest of her good bone, so eventually, she will outgrow her current jaw.  And that will continue to happen until she's done growing.

However, if she doesn't pass the capped sleep study (which is the result I'm expecting based on my home studies here), then she cannot be decannulated and that means that we would want her to have jaw surgery asap (this summer).

But, we need to get her on their schedule because we can't afford her to miss any more school if we can at all help it.  And I'm afraid the more time that goes by, the more likely we won't be able to get a summer date that affords her surgery and recovery time before school starts.

And she cannot have the sleep study if she's sick.  And getting a sleep study date takes months.  We scheduled this date two full months ago.

So, if we have to reschedule the study, then as you can see, we'll be well into 2013 and will likely not get a summer date, which means we'll have to decide if it's worth her missing school (really not an option) or if we can wait another WHOLE year for surgery.

Ugh.

So, like I said, I'm trying really hard to just let things be.  Because I have virtually no control over any of this.  What I really need to do is just embrace the trach for the long haul.  But, I just can't think about that.  The thought of her still having the trach years and years from now is more than I can handle.  I need to break it down in smaller chunks of time.  Because when I think about her going to the pool, well, it's just too much.  She's six and she still fits in an infant raft with a built-in seat.  That isn't going to last forever.  What are we going to do then?  She loves the pool!

Anyway, so that's the scoop on the capped sleep study.

Okay, must go and take care of some things.  More later!
Thanks!
~Christy


4 comments:

Susan said...

Why oh why oh WHY does it always happen like that?! I'm not sure when the sleep study is scheduled for. A few weeks out I hope? If it makes you feel any better Ainsley got sick before her sleep study. She was well enough to go, but barely. I was really upset, but the more I thought about it, I realized that she will need to be able to breathe while sleeping when decannulated. It is harder with the cannula in the airway so I wonder if the sleep study had been done when she was 100% if it would have had a better outcome. But the last thing I want is to have decannulate prematurely and then have to retrach and the nightmare that would entail with losing nursing/waiver status and then having to set that all up.

I hope it works out Christy.

And when you said cap I thought trach cap and was confused for a sec. Ha ha. He sure is cute.

Susan said...

P.S. I meant when sick too. Sorry

Christy said...

Susan, I know! I have no idea why it always happens this way. But, I know I'm NOT alone. So many of us are plagued with bad timing and surgery schedules. Ugh.

Oh, and I forgot to say that her sleep study is January 13th! Just 9 days away! I know. It's not looking good...

xo

Ann said...

Ugh! I hope Harlie recovers for her sleep study. It's crazy how long it takes to reschedule things and how one missed event has such an impact on everything else. I think you do have to take the approach of "Que Sera, Sera". Not that it's easy to do, but, as you said, there is nothing you can do to change what will be and if you don't "give it up" just a little bit, you will lose your mind ... or become an alcoholic. :-)

Hang in there my friend.

xoxo