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."

WHAT?!

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

Harlie is sick.

Harlie is definitely sick.  She is miserable.  I guess she has a cold.  I don't think it's anything more than that, yet.  Her sats are staying good - still high 80s to low 90s.  Wow, what a long way she's come.  It wasn't really that long ago that a simple cold would drop her sats drastically.  That's a comforting sign that her lungs are growing and that they're able to handle a little stress (despite the fact that she had two lung lobes removed at eight month's old).

The past two nights have been horrible.  Last night worse than the one before that.  On Wednesday night she had a terrible coughing spell that lasted about an hour.  So, I was up and down about 15 times in that hour.  Last night (Thursday night) was even worse.  Her coughing was spread out over the whole night.  I was up at least one or two times every hour.

I feel so bad for her, though.  You can see how awful she feels just by looking at her face.

After Terri left this afternoon, I really couldn't leave her side.  The second I left the living room (she was sacked out on the couch watching movies) she would start coughing and then call for me to come suction her.  She even used her communication device (the black thing in the photo) to say, "I need to be suctioned" all on her own with no prompting from me.

I know she can't help it, but I couldn't help but get annoyed.  All that freaking suctioning gets old!  Especially when half the time she really didn't need to be suctioned.  She was clearing it on her own, but for some reason she wanted to be suctioned.  I guess it must make her feel somewhat better, or she wouldn't have asked.  I don't know.

At any rate, going back to not being able to leave the room for a more than a few seconds is hard.  It took several trips into the laundry room before I could actually accomplish switching out the loads.  I took the boys to the gym with me this morning and when I got back, Terri said she couldn't make Harlie's bed because she would get up there and Harlie would need her again.  After a few trips up the stairs, she just waited for me to get home.  We had to change her bedding out because this morning there was some blood on her sheets.  I have no idea where it came from.  Her trach appeared to be clean.  There was nothing that I could see in her ear.  I don't know if it was just from all the coughing or what.  I was thinking that the last time we found blood in her bed she lost a tooth.  But, she won't let me really get a good look in her mouth to see.  And I didn't find a tooth, so who knows.

Despite feeling like crap, she did play with Rooney some.

Geez, Rooney.  Don't mind Harlie, just lay wherever you want.

She even smiled.  Which sorta proves that dogs are healing.
For this brief time she wasn't thinking about how awful she felt.

Tom made chicken and pesto pizza tonight (yum!) and while we were eating I looked up and saw Rooney's little head peeking from the other side of the table.  We NEVER feed him people food, but I guess he hopes we'll change our mind one day.

Harlie signing "sick" to me.  

When I tried to tube her water or food, she covered up her g-tube with both hands and flipped out.  Sometimes she really breaks my heart.   She handled the first two cans okay (she gets four in a day), but after that she wasn't having it.  I managed to get once ounce of formula with a couple flushes of Pedialyte.  Now that she's sleeping I'll sneak some more fluids in her.

Oh, and I forgot to tell you that the date of her sleep study is January 13th.  Less than nine days away now.  Awesome.  They actually called today to see if she was going to make it.  Now I have to ask, how the hell am I supposed to know that?  How can anyone guarantee you're going to be somewhere in nine days?  I plan on being there, yes.  Crossing my fingers that we get to go through the living hell that is a sleep study.

I have to share my friend Susan's blog post about her daughter's sleep study.  She has a few pictures of Ainsley all hooked up and that is the part that I'm dreading the most.  It's sticky stuff and Harlie HATES sticky stuff.  So, that should be a lot of fun.  Especially since they only allow one parent to stay, which means I'll be all alone to try to handle everything.  I can't wait.  It's going to be awesome.

Okay, must try to get some sleep while Harlie is sleeping.  I have no idea what's in store for us tonight.  And I'm supposed to run eight miles tomorrow.  So, a good night's sleep would come in handy.  Wish us luck!

More later!  It's already January 4th and so far, I'm sticking to my resolutions!  Although it's going to take some time to go through my e-mails...

Thanks!
~Christy

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

Happy Thanksgiving, and updates.

It's Thanksgiving Day.  I should be writing a mushy post about how thankful I am for so many blessings in our life.  And I am thankful.  But, I'm thankful every day for that stuff.  Seriously. Not a day goes by that I don't think about how different our life could be if we weren't so blessed.  So, spending one day to write about it just doesn't mean much to me.

Plus, if you haven't guessed from my serious lack of posting, I'm kinda in a funk.  And I think it's a worry-funk.  I find myself seriously worried about all kinds of things.  Like the state of our country, our economy, the potential of what's happening to seriously affect Tom's job and our livelihood, Harlie, Murphy, Cooper, etc.  It's terrible.  I am not a worrier by nature - so this is a new change, and one I'm not happy about.

So, to bring you a little up to speed... here are some updates:

BAHA
A few weeks ago Harlie had an appointment with her local ENT to see where we are with her bone anchored hearing aid.  Despite knowing the overall time table, I still had my hopes up that we could be on the fast track.  I don't know why I do that to myself.  But as I've said before, hope is a funny thing.

She had the first surgery August 3rd.  The second surgery is usually done three to six months later.  The titanium implant has to go through ossification, where the bone pretty much accepts and grows around the implant to secure it in place.  Our ENT wants to give her the full six months to ensure that this process happens successfully.  While I understand (of course) I was still disappointed.  So, we will schedule the next surgery for sometime in February 2013.  Then we will have to wait at least six weeks after that for us to be able to actually use it.  It will take that long for everything to heal enough that it can handle the pressure of clicking the hearing aid in place.  I know that time will be here before we know it, but sometimes it feels like forever.

Plus I know that I have a lot of hope that having this bone anchored hearing aid will completely change her life for the better.  That somehow she will hear SO much better that it will improve her life, and our life, immensely.  I have a sneaking suspicion that I'm setting myself up for some more disappointment.

Trach Status
So, a few weeks ago, I did my own little sleep study.  As you might guess, the results were far from ideal (otherwise I'd be happier).

She fell asleep with the cap on just fine, while laying on her back.  Her sats were good - bouncing back and forth between 89 and 90 (which is good for her).  Within just a few minutes, her breathing became very noisy.  I turned her over on her side to see if that helped.  It did not.  The noise sounds similar to snoring, but much worse.  You can totally tell that her tongue is obstructing her airway.  I stayed strong and stood by, hoping that somehow she could control it and get past it. I tried to focus on her pulse ox to let her good numbers keep me strong.  There was one moment that she didn't breathe for a second or two, she stirred a bit but didn't awake and then her noisy breathing continued.  After about ten minutes or so, my stomach was in a knot and I couldn't take it anymore.  I removed her cap and her breathing relaxed and she was so much more comfortable.

I would say that her third jaw reconstruction was NOT a success as far as function goes.  Devastation does not adequately describe my feelings.  Writing about it earlier was not an option.

So, I e-mailed her oral surgeon in Boston the next day.  I told her about our "sleep study" and asked her when Harlie would be ready for the next surgery (I'm assuming it would be jaw distraction).  She said that she wanted her to have a real sleep study and if she failed that one, that we could do the next surgery this summer, 2013.

I then e-mailed her ENT in DC and brought him up to date.  I explained that we need to have the sleep study ASAP because it takes months and months to get on the surgery schedule (last year we scheduled her surgery in February and the soonest we could get in was August 24th!).  We need the results in time to get on the books earlier in the summer.

Our capped sleep study is now scheduled for January 13, 2013.

At some point (okay, on my mind constantly) I need to think about this.  Should we proceed THIS summer?  Is it too soon - emotionally, I mean?  Is it worth ruining a whole summer for her?  Jaw distraction (which is what I am assuming she'll have to have) will not be a fun, easy or quick process.

And I have to ask the question - how many surgeries will it take?  When do we give up?  Will she ever be decannulated?  I can't believe she is six years old, has had three major jaw reconstructions, and she is STILL trached and I am asking these questions.

I would never have guessed we would be here six years ago.  Again, I'm reminded of how funny hope is.  It is amazing that it returns, despite setbacks and/or proof that it shouldn't be there at all.  But I am unwilling to live without it.  It keeps me going.  It makes life easier to live.  And I still hope that January's sleep study will pleasantly surprise us.

Jaw distraction - for those that don't know - involves cutting the bone of the jaw on both sides, putting screws and rods on either side of the breaks and then turning the screws to extend the breaks, each day. With every break, new bone grows in its place.  Each day the screws are turned again, the new bone breaks, and newer bone grows in its place.  This continues for a while (I don't know how long).

Jaw distraction is not something I hoped for.  In fact, it's something I've hoped to avoid.  I really, really hoped that jaw reconstruction, would do the trick and that distraction would never need to happen.

Jaw distraction can be done internally, or externally.  Both techniques come with its pros and cons.  Both leave scars that are undesirable (plainly seen on the face, or felt in the mouth).  Jaw distraction was not an option before.  Her bone was not connected prior to her jaw reconstruction in August.  She now has bone to distract, whereas in the past, there was none.

When I think about all that goes into this I still can't believe that wanting her to be able to breathe through her nose and mouth and learn to talk and eat, is such a pipe dream (or a set of pipe dreams?).  Who the freak would have known???

About her being Non-Verbal
So, a few weeks ago, we had some friends over.  One of them was in the kitchen cooking with Tom.  Harlie was on the computer.  She pointed to the screen (which was on You Tube) and she signed the letter "M".  I asked her for more clues.  She then signed the letter "3".  I still didn't know what she wanted.  She was saying something that sounded like "hm hm hm har" or "hm hm hm heart".  Nope, still didn't get it.  I went and got her communication device.  I put it in front of her (while telling her I didn't understand her - and asking Tom and Mike for help in figuring this out) and she pressed the button for "animals" and then pointed (not pressed) to the button for "zoo".  I was frustrated at this point and clearly didn't understand why she would point to a button instead of pressing it.  Just press it already!!!  She finally pressed it and then pressed "lion".

So, here were the clues:

M
3
some word that has 4 syllables, and ends in a "har" sound
Zoo
Lion

And I'm embarrassed to say that I STILL didn't get it!!! But neither did Tom or Mike, so I wasn't alone.  I finally gave up and felt so horrible and sad and frustrated that I left the kitchen table.  I happened to walk past the dining room and I just happened to spot a DVD laying on the table.

It was Madagascar 3.

A-HA!!!

I grabbed it and took it back into the kitchen and asked Harlie if that is what she wanted and it WAS!!! Hallefreakinglujah!!!

Just minutes later Mike asked to see the necklace I was wearing.   It reads, "A mother knows the words her child cannot say."

I wish.

It kills me that her asking for freaking Madagascar 3 took so much time and energy - for the both of us. Especially when she was actually trying to say "Madagascar 3".  Two freaking words!  And it really illustrates the difficulty in teaching her new things (much more complicated school-related things).  Despite how smart she might be.

The other day I think her leg fell asleep.  I, of course, don't know for sure as she cannot explain what she feels or thinks.  If her leg felt funny, she could not ask me what was going on or why it was happening.  Nor could I try to explain it to her.

So many conversations lost.  So many learning opportunities lost.  So many moments lost.  It kills me.  Every day this happens and I know it.  I am so, so thankful for all that she can do, yet I feel such a sadness for all she wants to do, but can't.

I want to end with something positive.

Today I got to sit at a table with 20 people (give or take).  And I got to laugh with my husband, kids, nieces, nephews, siblings (and their spouses/girlfriend), aunt, a few friends and parents.  I am thankful.  Life is hard.  No doubt about that.  I worry.  A lot.  I love.  A lot.  I laugh.  A lot.  And I hope.  A lot.

Happy Thanksgiving my friends!
Love,
Christy xo

Sleep Study or No Sleep Study?

So, to add on to my last post - Harlie spent FORTY minutes in the bathroom at school today.  FORTY.  In a ROW!  So, she went from having diarrhea to being constipated.  With no help from me.  Meaning, I didn't give her anything for her issues.  I've been there, done that.  I speak from experience when I say her having diarrhea is far less stressful than her being constipated.

So, I don't know how that happened.  She's still on her antibiotic, too.  Weird.

Poor thing missed out on FORTY minutes of her special education classroom time.  And let me tell you - that time is valuable!

And, quite frankly, poor ME for having to stand there waiting.  For FORTY minutes!  

It's all over now.  She's good.

And to make this sickness stuff even better... as is often the case with trached kids - it's perfectly timed.  And my trach friends will agree.  They always seem to get sick before a procedure or surgery.

Months ago I scheduled a sleep study.  And it's Friday night.

I don't know what I'm going to get out of it.  And I've been waffling back and forth about whether to go through with it for months.  My decision might be made for me if she isn't 100% soon.  And I mean really soon.

Here are my reasons why I think we should put her through the agony of a sleep study:

1.  She can wear her cap for most of the day, most days (as long as she's not sick, of course).

2.  Should we put her through another jaw reconstruction without just checking to make suuure that it's completely necessary for decannulation (getting the trach out)?

3.  Maybe there's something I need to know, that I don't know I need to know.

4. She can lay on her back on the floor with her cap on, and still breathe.  But she can't while sleeping.  Is there another issue of which I'm unaware?  Or does she consciously work harder to breathe while awake vs. sleeping?

5. I want her to have the blessings of her ENT to be capped.  Yes, I've been capping her for months.  But, he doesn't know that.  And that makes me feel very bad.  But, sometimes as a Mom, we just know what our kids can handle, even when there's no real evidence that they can.  And sometimes, even stranger, there's actually evidence that they can't handle it.  But, I just know that the evidence wasn't completely accurate.  She was in a room full of people and she wasn't able to fully concentrate on breathing when he tested her with that gauge thingy.  So, I want him to see that she can handle the cap.  Which means I will have to come clean and tell him that we have a cap and have been using it and that I'm bringing it with me.  I'll do that tomorrow.  Or Friday.

Here are the reasons why I think I'm going to regret putting her through the agony of the sleep study (if we can go through with it):

1.  I know she can't sleep without the trach.  But of course there's a wee tiny bit down deeeep inside that has an ounce of hope.  I guess it's better to know for sure then to be left wondering what if.

2.  We're going to go up there, go through 45 minutes of taping, glueing, and torturing her (wire leads everywhere) to put her cap on for 30 seconds (which is longer than I can take of hearing her struggle in my own tests here) to realize that she can't breathe with it on.  She will then sleep the rest of the night as usual (which is usually good, by the way - or at least I think it's good) and we will gain no valuable information whatsoever.  I, on the other hand, will have a crappy night's sleep knowing some complete stranger is up watching us sleep.  Creepy!  I think I've seen a similar plot in an episode of Criminal Minds...

3.  It's in DC, on a Friday night.  Which I scheduled on purpose so she wouldn't miss school.  But, now I'm questioning that logic.  Friday night drinks or Harlie's education?  Again, waffling...

4.  I have to take her by myself.  They will only allow one parent to stay.  I guess to make them more vulnerable.  I really need to stop watching Criminal Minds.  Seriously - the drive there and back is what I'm really worried about.  Well, I'm not worried exactly, it just sort of stresses me out.  If she needs to be suctioned, I'll have to pull over on 95.  And you know I'm going to be in the fast lane!

So, there seems to be more legitimate reasons for going through with it than not.  More than likely it will be a big fat waste of time and energy.

But, hope is a funny thing.  It doesn't take much to make you go through some crazy stuff.

Thanks!
~Christy

Bummed

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!

Thanks!
~Christy

ENT Update

So, they took her back at 8:39am.  We got here at 6:45am.  First thing this morning, we had a flat tire!  Of all the luck!  There is a big screw in the right front tire.  Let me just say that we did NOT need the added stress.  So, we limped to the hospital and Tom will take care of it when the spinal fusion is underway (since that will take several hours).

She got mad when she saw the hospital bracelet.  At first she held out her hand, but then changed her mind.  We ended up having to put it on her ankle - and that was a struggle.  Then they called us back and she saw the bed and hospital gown.  Oh no.  We're in a bad time period.  Old enough (and experienced enough) to know what's going on, but not old enough to understand why and be able to prepare on her own.

She broke my heart turning away from us in her stroller and shooing us away.  She wanted no love from us this morning.  Then they brought her Versed.  That definitely helped her relax.  But even still when I asked her if she wanted to sit on my lap, she shook her head "no."  Like a knife through my heart I tell you!!

It is now 9:55am and we have spoken with her ENT.  Her ear looked good, except for the large amount of ear wax gooped in her canal.  Wearing a hearing aid 12 hours a day makes things worse in that department.  So, he started us on an ear drop regimen.  Hopefully that will help.  He said her ear drum looked good and there was no sign of infection.  So he did not place another ear tube.  Which is good, I guess.  Her other one had fallen out and without any infections in recent memory (years) there was no reason to replace it.

As far as her jaw goes... he still could not use a rigid bronch.  He said that's not necessarily a reason to keep the trach.  The problem will be if she doesn't have the trach, they will not be able to intubate her for surgeries.  That's disappointing.  Not sure what would/will happen then.  He used a flexible bronch that is fed in through the nose.  He said you can use that for surgeries, but it is tricky.  Not really a concern right now, obviously.

He said that her tongue base and jaw still occluded a little bit during the bronch (when they didn't lift her jaw up out of her airway).  So, that's unfortunate.  But he said that a bronch is so subjective for her situation.  The only way to see if she can be decannulated is to have a sleep study.  She would be inpatient here, and while she's sleeping they would cap her trach and see what happens.  She does fine while awake, but sleeping could be another matter.  :(  So, we will plan to do that sometime this summer.  He said that her trachea itself looks great and healthy so if we can just keep her jaw out of the way, we'd be home free.

I am certainly disappointed overall.  I really thought that he would be able to see a positive difference from the last bronch.  But he said that it was only slightly better than the previous one.  Her jaw was just so severe at birth.  Ugh.

He said that since she doesn't have any chronic lung issues (infections, etc.) that he would decannulate her whenever she was ready - no matter the season.  So, that's good.  So, I guess we'll just get that scheduled at some point and go from there.

Moving on...

Earlier when waiting to be taken back to the OR, her ortho surgeon came to talk to us.  She said she might consider fixing the area higher up on her spine (kyphosis scoliosis) - the part that bulges out.  But, she needs to see how long she's in there and after fixing the bottom part, she needs to get x-rays to see how it affects the bulging (kyphosis) part.  They said they would call us to let us know what she decides because if she continues on, it will add another hour to her surgery time.

The negative to fusing the upper part today is that it will no longer have any growth potential.  So, that would mean that two areas of her spine would be fused and not grow.  But, she said she can't be certain that it would have grown normally anyway.  The areas are abnormal in nature from the get-go - who's to say it has any "normal" growth possible?  And any growth she does have will just keep it going more crooked.

In situations like this - I just try to not think about it and put it in their hands to make the best decision for her.  Not that I had a choice, really.  It's a good thing I was never a controlling person before Harlie came along.

So now we wait.

I wanted to show you pictures of the Ronald McDonald House and of Harlie in her hospital gown.  But, we forgot our USB cord to upload the photos from the camera!  Ugh.  So, we'll have to see what we can do about that.  I can't live all week without showing you pictures!

Oh, and during our wait to go back to the OR, we met with both anesthesiologists.  The ortho doc was pretty funny.  He said we had no idea how much planning and time has gone into preparing for this surgery.  He said he knows her history intimately and the amount of e-mails were crazy.  I told him now he knows what our daily life is like!!!  Try throwing two boys into the mix and BAM! you go crazy.  And then you want a Pug puppy.

It's now 10:36 and I just heard from Tom that the tire is plugged and it only cost $17.  We were nervous that we were doing some damage to the tire driving on it to get here.  So, hopefully that will last us a while.

Okay, I will update you more later.  Thank you for all your comments, messages, texts, etc. of support and encouragement.  I can't tell you how much your outpouring of love for us makes us feel during hard times like these.  While my heart breaks in some places, it swells full in others.  Thank you for that!

xo,
~Christy