Thursday, November 22, 2012

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:

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:

some word that has 4 syllables, and ends in a "har" sound

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.


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!
Christy xo


Ann said...

And the reason you still have your sanity my friend is because you love a lot, laugh a lot and hope a lot. Thank God for all the people in our lives who help us love and laugh and for our kids and the doctors who care for them who give us hope. Life is freaking hard, but, we've pretty much mastered the whole hard thing too!

Happy Thanksgiving Christy.


Grandma said...

You would not be a mother if you did not feel those I still worry about my kids at their ages...hell grandkids...hell yea! Once a mom always a mom...if you did not feel you would be a robot...but you do and sometimes you laugh and sometimes you cry and you are normal! Think positive...Harlie is trying and one day this you will look back at this and wonder how did we do this! Remember when she made no sounds, wore a helmet, couldn't eat at is slow but it s always a step forward. I love you.

Veronica said...

Happy to hear your Thanksgiving was very much we have to be thankful for! Always keeping Harlie in my prayers... she is a warrior. I have a question. Does she still wear the BAHA on a band for now? John just got his last week. He's 26 months. He likes the sound it is adding, but getting use to the band is tough. Almost makes me wish he had been a girl that has been wearing a headband all along so he'd not feel so freaked by it. Haha :)

Christy said...


Yes, Harlie still wears her BAHA on the headband for now. From what I've learned most ENTs will not perform the surgery on children younger than 5 years old. We had to gradually work up to her wearing it all day. It was not easy at first. But eventually I think she got used to the band and found that it was worth it to hear better. The fact that he is using it at his age is awesome. We lost a lot of years and learning opportunities not knowing she needed any assistance until she was three years old. Ugh! When he starts school and is wearing it - just educate the other students about why he needs it. I have been very pleased how accepting kids have been!

Hope all is well!