Showing posts with label capping. Show all posts
Showing posts with label capping. Show all posts

Tuesday, October 9, 2012

A Good Update.

This post is so long overdue that I have no idea where to begin!

First, I think I'll start with Harlie's overall status.  A few weeks ago I was really down in the dumps about where we were.  I just wasn't prepared for the ten steps back post-surgery.  You might think that after 30 of them I would have the whole thing down-pat.  But, I don't.  Each surgery is a whole new experience.

But, I am so happy to report that Harlie is doing... GREAT!  Seriously!!!  It's like she saw how sad I was and said to herself, "Okay, I guess I should give mom a break, she looks like she's going to crack".

A little more than a week after that post, I could see an improvement in her drooling.  I didn't want to get my hopes up, so I didn't say anything.  After one day of improvement, she would have a day of no improvement.  This went on for about a week.  Then one day, she came home wearing the SAME clothes that I put on her in the morning.  And then I knew!!!  She figured out how to swallow!!  There are no words to describe my relief and happiness.  No. Words.

We see her feeding therapist on Thursday for an evaluation to see where she is and where we need to go from here.  I am so, so happy that she's able to swallow for this appointment.

Academically she is doing great, too!  I don't know which is more shocking - her ability to swallow or her academic progress!

The problem with her academics has been her lack of willingness to participate.  I think most of her teachers (and us) believed she was capable - she just didn't want to show us.  Over a week ago, she came home and the report from her nurse was that she just flat-out refused to do what her teachers told her to do.  Well, clearly, we can't allow that to continue.  Her favorite thing in the world is the computer.  So, I told her she was not allowed to get on the computer that day because she didn't listen to her teachers.  I told her that wasn't allowed and she's at school to learn and work hard and saying no isn't an option.  She was very upset.

But, the next day she listened!  And followed instructions!  Last year she struggled with beginning and ending sounds.  You know, like mouse starts with m.  But, in order to do that successfully, one has to know what "begins with" means and be able to hear the sound m makes.  If memory serves, she started to do it successfully a little bit at the end of the year.

But, look at her now...


Awesomeness!!!

I am so proud of her!  And another thing that I've noticed at home is that there is much less of a delay between me asking her a question and her answering.  There used to be a very long pause or no response at all.  She doesn't always answer me - sometimes she doesn't want to.  But, for the most part, if I ask her something, she answers in a timely manner.  This is a huge improvement!  And it seems that each improvement, leads to another improvement... which is a fabulous trend!

Another development is that we were able to get Harlie back on her speech therapist's schedule.  Her ST is awesome and I just knew that she would be booked solid.  But, somehow she found a spot for us and we are thrilled!  She's had two sessions so far, and they have both been wonderful. She's not perfect (Harlie, I mean) and doesn't always cooperate - but again, the improvement in her following instructions is remarkable (in my opinion).  So much time was spent on waiting Harlie out and trying to find something to motivate her enough to do whatever it was that Amy wanted her to do.  But, it seems there is very little waiting now.  And in her last session her not listening was her trying to be funny and joke around with Amy.  Overall, another huge improvement!

Last, but not least... Harlie has been able to wear her cap consistently for the first time since March!!!  A cap is a solid piece of plastic that covers the trach and prevents air from flowing through her trach.  It forces her to breathe - both in and out - through her mouth and nose.  It makes her voice so much more clear and understandable.  Even to herself!  So, learning to talk will come so much easier to her if she can wear her cap more.  I tried the cap on last week and as expected, she yanked it off immediately.  But, I knew she could do it.  So, one day we went to take Rooney for a walk and she wanted to take a toy with her.  I told her she could only take it if she wore her cap.  So, she put it back on, grabbed her toy and walked out the house.  She wore it for 45 minutes straight, with no problem whatsoever.  The next day at school, Terri put it on her at 7:30am and when she got home at 2:15pm she was STILL wearing it.

It is amazing to me how everything is falling into place.  Especially after how I felt just a few short weeks ago.

This little girl...


totally amazes me.  She really knows how to bounce back.

We go back to Boston Children's Hospital on October 19th for our follow-up appointment.  I am now looking forward to hear how they think she's doing and what's next...

I have much more to tell you - the We Heart Harlie 5k, Cooper's birthday (poor kid) and a whole bunch of other stuff... but it will have to wait for now.

Thanks for checking in!
Much love,
Christy xo

Wednesday, January 18, 2012

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

Monday, January 2, 2012

Back to the Grind

I hope you all had a safe and Happy New Year. We didn't do much this year. Tom's Mom and Cal (Grandma and Pap Pap) came down to visit. Tom made a wonderful dinner with fresh and local ingredients. I will have to tell you more about it later.

Today is the first day back to school for the kids. And we don't have a nurse today, so I'm on duty. The house was a little crazy this morning but it feels good to be getting back into a routine.

Lately I have been giving Harlie a choice between wearing her PMV or cap. With her PMV she inhales through the trach, but exhales through her mouth/nose. With the cap she inhales AND exhales through her mouth/nose (EXCITING!). And she chooses the cap every time!!

She also said she wanted to wear her BAHA in class. We are really making progress in terms of devices.

Although I forgot to tell you that the FM wire system we worked for weeks/months to get was lost after the very first week. On The last day of school prior to the Christmas break, her hearing impaired teacher went to put it on her and the connection piece wasn't on her aid. I didn't realize that it could even come off! So, at some point between Thursday after school and Friday at 8am, it fell off. I can't remember if it was on there Friday morning when I put her aid on. Which kind of tells me it WAS there, otherwise I would have seen it looked different. I went back and retraced our steps, but couldn't find it. It is beige and very small. So now we have to get a new one. Ugh. Until then she goes without the system.

So, over the break Cooper really surprised us. I've been meaning to tell you that they have started to have their own conversations.

One day they wanted to play with the same toy. Harlie said "mine" and then Cooper said "mine" and they went back and forth until they both busted out laughing. I realized that it was their very first verbal conversation and I wonder if they realized it too since they laughed.

Since then they've had several similar conversations with words like my turn, and lights on/lights off.

One day Harlie signed that she wanted to watch A Bug's Life. We walked into the playroom, where Cooper was playing, and started to put the movie in the player. Cooper had his back to us and said "Mommy, I want to watch Scooby Doo" and then Harlie said, "No, uhuhuhuh." she was saying bug, but didn't have her PMV or cap on, so you couldn't tell that's what she was saying. But then Cooper said, "okay, I'll watch A Bug's Life." What?! I couldn't believe it!

Then, the kicker... Harlie was in the dining room, and Cooper was in the kitchen, two separate rooms, and Harlie was sitting in front of the computer telling me something she wanted. But I couldn't understand her. So I said (after many attempts to understand),"Harlie, I don't know what you want, you're going to have to get your talker." and then Cooper yelled from the other room, "Mommy, she wants to watch Pocoyo!" WHAT?!?! So I asked her if that's what she wanted and she said yeah.

Isn't that crazy?

I'm still floored. I mean, I know siblings help translate for siblings, but this is incredible! If you could have heard her grunts, you would NEVER have gotten Pocoyo out of it. And he was so confident. It wasn't like he was saying she might want Pocoyo. Crazy!

Okay, that's it for now. We're in her hearing impaired class now, so I want to watch. I will write more later.

Thanks!
~Christy

Friday, November 11, 2011

Worries...

I don't know where to start.  So many things are stressing me out lately.  Maybe if I list them out, it will help me organize my thoughts and worries.

1.  Harlie's IEP (individual education plan) changes (which we are currently working on).
2.  Harlie's medical issues at school.
3.  Cooper's preschool issues.
4.  Nursing schedules.
5.  Jaw surgery for Harlie - working on second opinions.

There's more, but those are the biggest right now.

I'll start with Item #2.  Harlie's medical issues at school.

Did I tell you that we found a new nurse?  I can't remember.  Anyway, Terri's been with us for 2 weeks now (which I think is 6 days of working so far).  So, yesterday (Thursday) I told Terri to take Harlie's cap to school and put it on her for an hour at a time to see how she does.

A cap is a piece of plastic that goes over the trach, and completely stops any air from being able to go in or out, forcing her to breathe through her mouth and nose.  We put it on her Wednesday after school and she did great!  It is much harder to inhale for her than to exhale, so that's the real test.  Anyway, so following my instructions, she waited till Harlie got settled in, and went to put it on her.  Harlie's interpreter saw what she was doing, and told Terri she could not put it on her because she needed to have her PMV (or speaking valve) on to talk.  Terri, being new and not wanting to rock the boat, didn't want to argue with her, so she put the cap away, and put her PMV back on Harlie.

To give you a little education - the trach is located below your vocal cords.  Your vocal cords work by air passing through, causing a vibration.  Air passes through them when you breathe.  But, since the trach is below the vocal cords, air doesn't get a chance to travel through them.  So, no sound can be made.

The PMV is a one-way valve that allows air IN through the trach but not OUT.  That forces the air to exit via the mouth and nose, which means air now can travel through the vocal cords, thus sound can be made.  Which is also why the PMV is called a speaking valve.  It is called a PMV (Passy Muir Valve) for the people who invented it.

Now, put a cap on the trach and ALL the air travels through the mouth and nose (just like a normal person), which means air travels through the vocal cords, and sound can be made.

So, as you can now see, the interpreter telling Harlie's nurse to not put the cap on was completely WRONG.  She can speak with either on.  But there are more important issues here...

1.  There is not another person in that entire school that knows what Harlie needs medically.  And I realize that there is no way that her interpreter should know all that stuff.  Which means she has NO business telling Harlie's nurse anything when it comes to her medical care.  Period.

2.  Several staff members have already questioned her nurses on several different things.  And I don't mean, "Oh, so why do you have to do that?"  I mean, "What are you doing and do you have to do it now?"  I can't tell you how bad it could be if Harlie's nurses had to consider the staff member's reactions every time she had to do something with Harlie.  That is a very dangerous road to go down - it's something simple today, something life threatening later.  And I just cannot allow it.  We (her nurses and I) are very respectful when we have to enter the classroom.  But that respect needs to go both ways.  And let me just tell you - none of us want to be there.  I wish we weren't needed.

3.  If her nurses don't feel comfortable there - they will quit.  And I will be pissed.  We need our nurses.  And I know they get paid squat.  I want them to like this job.  I want them to be happy.  And if they feel like every time they have to do something with Harlie that they are making someone mad or uncomfortable, they won't want to do it at all.  Not a good situation at all.

So, I sent an e-mail about this last night.  And for some reason it didn't go through. So, I had to send it again this afternoon.  Hopefully we can reach an agreement that we all just need to get along and work together as a team.  After all, we all want the same thing - for Harlie to be able to learn and be safe at the same time.

On the same medical issues subject.... I received a call today from a nurse with the school system.  She is a registered nurse (RN) and wanted me to know that they wanted Harlie's teacher to know how to suction Harlie, should there ever be an emergency and Harlie's nurse was unable for whatever reason (she was in the bathroom, which is down the hall, for example).  BUT, she said that since her teacher is not an RN she was not allowed to suction past the opening of the trach. Which basically means she's not allowed to suction at all.  So, the whole training thing is pointless.

Suctioning means you're using a catheter and inserting it in the trach tube (cannula) to suction out mucus from the cannula which is about 6mm long.  So, if Harlie has a mucus plug (a sticky ball of mucus that gets stuck in the cannula) and Harlie is unable to cough it up to the opening of the trach, she is not allowed to insert the catheter deep enough to suck up the mucus plug.  So, should Harlie not be able to breathe because of this plug, she won't be able to do anything to help her.

And this, my friends, is County policy.

So, I told this nurse that this policy is the same as telling a mother that if their child chokes on a hot dog at lunch, they will only be able to do the Heimlich Maneuver halfway.  What about CPR?  Only halfway, too?

What the hell kind of policy is that?!?!?

So, she says, "well in a real emergency, we would do whatever we had to do."  Really?  I told her I was hardly comforted by that, since the policy covers their ass from having to do anything.  Well, okay, I didn't say "ass."  But, I told her I was not comfortable with that policy.  It makes NO sense!!!  Who in the hell wrote that?  Certainly not a physician or anyone who has ever worked with trachs before.

It's actually quite scary.  But, clearly, not a concern for 99.9% of the moms of kids who go to school.  Just me and a few others scattered about the entire county.  Oh brother.

While I realize (and pray) that the scenario of Harlie's nurse being unable to suction, and Harlie being unable to breathe is slim to none, the fact that that policy exists is extremely bothersome to me.  Clearly, I have to make some phone calls.  Great.  Add that to my list.

Which reminds me, Cooper and I were coming home from preschool the other day when he says, "Mommy, I want chicken nuggets and french fries."  And I say, "But we don't have chicken nuggets and french fries."  And he said, "Whaaaat?!  Oh, great."

So, last night I was supposed to go down to the Expo, pick up my race packet and then head over to a friend's house with my running group and have dinner to carb load and have fun.  But, I was so upset over what happened yesterday, and I knew I had to send out that e-mail stat, that I just couldn't change gears, and go out and have fun like I was totally fine.  Because I wasn't.  Too many issues to worry with that I just WISH I DIDN'T HAVE TO WORRY ABOUT!!!

And I can feel how tense I am.  And it feels awful.  Luckily, I got a massage gift certificate for my birthday.  OH!  I haven't been able to tell you about that yet!  If you know that my birthday is in December, you might be confused.  I'll clear that up soon.  I hope.

So, the Half Marathon is tomorrow.  And I just haven't had the energy or the time to be able to get excited.  Which stinks.  I hate to be a complainer - but the past 9 weeks have been really difficult and straining.  I always feel like I'm on the verge of tears.  And I really am pleased with how well Harlie's doing.  But I get constant reminders of all she and we have lost and how difficult things are going to be for many more years.  And I just wish I could be a regular mom sometimes.  One who doesn't have to worry about suctioning or stupid policies that would endanger my daughter's life.

I was feeling particularly down this afternoon as I was racing to the Expo to get my packet.  I was late (as usual, despite all my efforts) and my friend Heather called and said she already picked up my packet - and switched my bib from the full marathon to the half for me.  Awesome.


I don't know what I'd do without my friends.  Especially Heather.  When I feel like crap, she makes me laugh.  And then I feel like myself again.  If only for a brief moment.

So, from this point forward, I am going to relax, and think about running with my friends - Heather, Niki and Natalie - and having fun.  I will run in this beautiful fall weather and I will soak in the cheering of the crowd.  And I will have fun.  And I will not worry about my time, because we'll probably gab the whole race.

And then later on that night we'll go to dinner with my running group.  I hope.  Because I just got a call from my nurse and she cancelled on me.  So, now I hope I can talk one of my other nurses into coming.  UGH!!!!!

Seriously, I'm going to have a GREAT time tomorrow.  I'll tell you all about it later.

Thanks for reading.  And thanks for always being here for me when I need to talk.
~Christy xo

Wednesday, June 22, 2011

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

Tuesday, June 21, 2011

Headed to DC...

for an ENT appointment.

Hopefully, if things go the way I want them to, she will come home in official "capping" status.

I guess I shouldn't make it sound so progressive.  Capping (sealing off the trach, meaning that she will breathe both IN and OUT through her mouth and nose) usually is a precursor to decannulation (removal of the trach).  However, I do not believe that is the case here.

I'm thinking that she will need at least one more jaw surgery for that to happen.  And since we haven't even thought about it - it is quite a ways down the road.

However, that doesn't mean that we can't do everything in our power to get her to function as normally as possible.  And that is my ultimate goal.

So, he's going to cap her and see how she does.  I am hoping that she does as well as I believe she can.  And in the back of my mind, in the middle of my heart, I am secretly hoping that the results will pleasantly surprise us and mean she could be decanned even without another jaw surgery.

I suppose you never give up hope for that sort of thing.

So, I'll let you know how it goes.  Keep your fingers crossed!

Thanks!
~Christy

Post-Op Days 11-13 - Headed Home!!!

Sunday, June 19 (Post-Op Day 11) Saturday was a better day than Friday. The emotional roller coaster of Friday made for a miserable, mentall...