Wednesday, June 22, 2011


Yes.  I'm bummed.  Today's appointment did not go the way I wanted.  And we are not officially capping.

Her doc used a pressure gauge to see what her breathing looked like (how hard she had to work to inhale and exhale).  It was a piece of hard, clear plastic that attached to her trach and had a tube coming off the side of the plastic, which was attached to the actual gauge.  The hard, clear plastic part was a couple of inches long and one end attaches to the trach and the PMV went on the other end.  As she inhaled through the PMV, the gauge measured the pressure.  While wearing the PMV the pressures were GREAT!  Not that I was surprised, of course, because she wears it just fine (with no distress) for most of the day.

So, after that was measured, we took the PMV off and blocked the end so that she would have to breathe both in AND out through her mouth and nose.  And she didn't do so well with that one.

But, I have to wonder about the amount of dead air space in the clear plastic piece and tubing to the gauge.  In order for the air to exit her body - it has to fill up all the dead ends before it finds it's way out.  It's always going to follow the path of least resistance.  There was a lot of dead space with all that plastic.  If you just block the trach off at the entrance to the trach, there is VERY little dead space in the cannula itself (the part you can't see - that's in her trachea).  So ALL of her air goes out and in the same way.

I know this might not make sense.  But, just trust me that I believe I'm right.

One reason is that it just makes sense to me.  I might not be doing the best job of explaining it in writing, but it does.  Another reason might be that I have to hold on to a sliver of hope that we can still make progress - or that progress was made after her last jaw reconstruction.  So, I'm hoping that dead space is the reason why she didn't do well and if you take the dead space away, she'll do better.

The third reason why I think it makes a difference is because I actually have a cap in my possession (shhhh - don't tell anyone) and I've already put it on her, while monitoring her oxygen saturation levels and heart rate and she did GREAT!  No lie - no exaggeration.

The reason why I have a cap is because I had NO idea that getting a cap would be so hard and that we would have to go through so much.  I thought it would be just like the PMV, which was ordered, and delivered with instructions to start using it for 3 seconds at a time.  Yes, you read that right.  We started with 3 seconds!!!  And then slowly (very slowly) built up her tolerance over a lot (like years) of time.  After only breathing through a trach (which is less "work" for her) it is hard and weird to learn to breathe through your mouth and nose.  And it takes more work.  Which is why you have to get them used to it slowly.

I will not reveal how I acquired this cap - but trust me when I say that I honestly thought her ENT would be totally fine with me having one and trying it out on her.  And I had the cap in my possession before I heard from her ENT that he wanted to go through certain hoops before giving me the okay to start capping her.

I don't necessarily mean to not follow doctor's orders.  I mean, that certainly wasn't my intent.  However, sometimes you just have to follow your gut and take some chances.  It really started out so innocently.  Which is why I couldn't bear to tell her ENT that I already have one and have used it!!!

And I promise that the second I read his e-mail that it wasn't so simple (which was weeks ago) - I backed off and became a lot more cautious.  I think the risk with her is that she has other issues (heart and lung, to be exact) that breathing just a tad bit harder could have a negative chain reaction internally that could have horrible consequences.  And we have come WAY too far to make a mistake like that.

It's just frustrating when I have seen her breathe just fine (that I could tell - with a pulse ox, too) but she didn't do that well today.  I believe a lot of that is behavioral.  There were three docs in the room and there was foreign equipment involved (on her trach no less, which I'm sure she's protective about).

I'm sure I looked crazy to the docs.  Ugh!!!  And what a horrible spot!  I couldn't plead my case with evidence - because I couldn't admit that I had the evidence!!!  Crap!!!!

So, the plan is to do a sleep study this summer.  If she can tolerate the cap while sleeping - then we know she can tolerate it during the day.  She will be monitored and sleeping, so that will take her behavior completely out of the equation.  My only problem with this plan is that what if she can tolerate it during her waking hours, but not while sleeping?  Because that's what I believe will happen.  I think she might have to work a little harder for her air to get past the base of her tongue, so she won't be able to continue to work like that while sleeping.

Ugh.  I don't know.

The other thing I didn't get to blog about is something pretty cool that happened a while ago (this is my "fairly exciting" news that I mentioned in this post).  One night after Harlie fell asleep, we blocked her trach with the obturator (it's a plastic tube that goes in the trach that acts as a guide to help you make sure that you get the trach in correctly - but as soon as the trach is in place, you pull it out so the person can breathe).  The exciting thing is that she continued to breathe - without skipping a beat - with little to no difficulty.  We stood there and watched her for 4 minutes and her sats and heart rate stayed the same!  I was so excited!

But, I know that 4 minutes doesn't mean decannulation.  But it renewed my hope that we are making progress and that her last jaw reconstruction was beneficial in some way.

So, we'll just have to see how the sleep study goes.  Even if it doesn't go the way I want - it will give us some accurate data so that we know where we stand.  And if nothing else, will give us baseline measurements should we have to compare things down the road.

I'm going to test her a few times with the cap while she's sleeping to see what happens.  Part of me says that if she doesn't do well at home then why go to the hospital for a sleep study?

And then all of these thoughts and developments (if you can call them that) have lead us to start thinking about her next jaw surgery.  I'll have to explain more in another post.  But, know that we will be exploring all our options, which means looking at other surgeons (in other states), before we put her through a third jaw reconstruction.

When I think about all this I feel so incredibly overwhelmed.  Even after all the countless hours and effort we have put into getting her - and keeping her - healthy and functioning as normal as possible, we still have so, so far to go.  There are so many times I wonder how in the world I'm going to have the energy.  And how will this affect Murphy and Cooper?   Or our marriage?  Or more importantly, my ongoing desire to get a Pug puppy????

Seriously, with this life, can't a woman just have a freaking puppy????  Is that so much to ask?  Geez.

Okay, thanks for reading.  I really do have so much more to write.  It looks like I'm getting my blogging groove back a little.  So, check back soon!



ANewKindOfPerfect said...

I'm sorry that the appointment left you bummed. I hate that feeling. :( I hope that you are able to do some secret cap studies and see good results, and then she can ace a sleep study!

Minerva McGonagall said...

I'm sorry Christy. You were between a rock and a hard spot. I will e-mail you. I just want to say though that maybe this is a blessing in disguise. Getting the okay to cap doesn't necessarily = decannulation in the near future. We've been working on capping for 2 YEARS. And it is a frustrating process in our case. Plenty of kids decann without long periods of capping so when the time is right maybe you'll be one of those cases. Chin up. You can do it! Keep doin what you've been doing. Don't look too far ahead. Stay in the now. Day by day, steady wins the race. (((HUGS)))

Susan said...

Oh crap, that was me Susan. I didn't realize I was logged into my Harry Potter blog on another page. Sorry about that.

Christy said...

Susan - I totally knew that was you. I could recognize you and Steve in any get-up! Thanks for the support! You know it means the world to me!

grandma said...

Geez...let's keep hoping the sleep study goes better. I do think if harlie is sleeping, she may do better. She is so afraid of doctors that that test could have been so overwhelming to her...we just have to have patience and pray.

I bet Murphy enjoyed the times with my bad the puppies were not home...maybe for your birthday???? but this is the right time to get home before the weather changes. keep begging...crying helps too!

B-Mama said...

Hey, girl, talking with you on the phone this morning, I had not yet read your post. I'm so sorry the appointment was so disappointing and that I didn't mention it to you at all! Double ugh! I am feeling your frustration (on a much smaller level, I know) and get antsy for you and Harlie and a future decann. I know this would open your world in so many ways.

Maybe it would help your brain to map out Harlie's future and where you'd like to see her end up physically, verbally, etc. years and years down the road and the steps you're going to have to take to get there. Sometimes when things seem completely overwhelming for me, I have to step back and get a big picture look at where I'm heading and break it down from there. I know you've done a lot of goal-setting already, but it's just a thought to help you deal with the here and now amidst all there is to be done.

Hang in there--hugs xox!

B-Mama said...

I just read back over my comment from earlier and I'm back to say forget my advice and do whatever it takes to make it the next day! Next time I'll tell a joke in the comments instead--that would be much more productive! lol. Hang in there, friend.