Tuesday, November 27, 2012

Random Thoughts and GI stuff

Random thoughts.

A few nights ago, we were getting ready to sit down for dinner when I heard Murphy tell Cooper that Harlie called him weird.  Harlie was in the other room at the time.  Cooper looked pretty annoyed at this information and left the table to go have a word with Harlie.  When he left I said, "Murphy, what are you talking about, Harlie can't even say the word weird."  And Murphy replied, while laughing, "I know.  That's what makes it so funny."

We couldn't help but laugh with him.  Sometimes I think the hard stuff in life gives you a really twisted sense of humor.  

Here's a picture of Harlie doing one of her favorite things.  Feeding Rooney.  That dog dances and spins around when he knows he's about to eat.  

Poor Harlie has had a rough few days.  Without going into too much uncomfortable detail, her GI system is somewhat "delicate." One of her birth defects required anoplasty at one year old.  And because her stuff was a little out of place, we have to be very careful to not let her get constipated. Should be easy on a formula-only diet, right?  Wrong.  

We've actually done okay thus far.  She's certainly had some moments that were unpleasant (for all of us), but for the most part, she's good.  But lately, I don't know what is wrong.  I mentioned the problem to her pediatrician at her well check appointment back in September.  So, I know we must have been having some issues if I even brought it up.  She has been on a daily dose of Miralax for years.  He suggested switching over to prune juice since it is more natural.  And because I tube it, we don't have to worry about her willingness to drink it.  

It took a few days to get the right amount figured out.  But then it was fine.  I also switched her over to the formula with fiber.  Same formula, just with fiber added.  

She gets four cans per day, plus 22 to 25 ounces of water.  But despite this consistency, she is still having issues.  She'll be fine one day, and crying in pain the next.  I don't get it.  

I do think that since she has some overall low-tone issues in her body, that her GI system is likely to be low-tone, too.  But, she's on an all liquid diet - with the same amount of fluids and Miralax (or prune juice) daily.  What is going on?  

Last Monday it was so bad that she couldn't go to school.  She missed the bus because as soon as I got her up to get ready, she sat on the potty, and wouldn't get off.  I had to send the bus driver on, without her.  She was in and out of the bathroom all day, with no results.  I think it was the next day or the day after that when she was fine again.  

Then, Monday (yesterday), she spent over two hours in the bathroom at school.  The whole class went to lunch and recess while she was stuck in the potty.  I had to pick her up early that day.  And I know for a fact that she went just fine on Saturday night.  She got her juice every day and by Monday she was crying while trying to go?  Makes no sense.  

I called her pediatrician and said that her missing two days of school for this is not normal.  He agreed.  He said to switch her back to Miralax to see if that helps.  She got a full cap yesterday and today and she was crying on the potty tonight with no real success.  Ugh!  

I am going to start writing it all down so I'll have some better info if we end up having to see her GI doc.  

So, changing subjects... every month a respiratory therapist has to come out to the house to see Harlie, check her sats and heart rate and check her equipment.  Most of the time it is someone who has already been out to the house, so they already know where everything is so I don't follow them upstairs to her room anymore.  

Well, last night (Monday) I noticed that Harlie's stationary suction machine in her room was backwards on her dresser.  I thought that was a little odd.  I know she has to check it and all, but shouldn't you put it back the way you found it?  Especially considering the way she left it, there was no way to turn it on from that angle.  I must say that I was a little annoyed.  

Then I went to use the machine and I swear that it's not working as well as it did before her visit yesterday!  It seems to have less suction power.  Tom fiddled with it tonight and couldn't get the suction power up.  So, I'm going to have to call tomorrow to find out what she did to it.  Now I'm really annoyed.  I know some RTs get hung up on the pressure number, but I know my kid and I know what she can handle.  So, don't go messing with my stuff.  

Of course I'm assuming that she messed up adjusted it.  If she didn't and this is all my imagination, then I apologize to her.  But I really think it's way weaker than it was yesterday before she came over.  For the record.  

Okay, must go now, totally falling asleep while writing... I apologize now for any and all typos.  I am so tired I am not going to proof it.  


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

Tuesday, November 13, 2012

Update and Halloween pics

Wow.  Another long absence from my blog.  So here's what happened in a nutshell... I got sick with some lung crud and was useless for about two to three weeks.  In that time, I got amazingly behind in all the administrative tasks of my life.  I mean, I was already behind to begin with!  And surprisingly, it takes a substantial amount of time and energy to blog about my life.  So, blogging while being sick wasn't an option.

I tried to be horizontal as much as possible (while being a stay at home mom).  If only I could call in sick...  And I really tried hard not to talk unless it was really necessary.  My throat felt horrible!

But, I'm all better now.  Health-wise, I mean.  But I am so behind in all my paperwork crap and making appointments, etc.

I've also developed this weird problem... I have to have the house neat and clean in order to sit down and do anything (like blog, write thank you notes, pay bills, etc.).  You can probably see where this is going...

By the time I get the house neat and clean, Cooper gets home from school at noon and he just messes it all up again.  I have to make him lunch, clean it up, feed the dog, walk the dog and then Harlie and Murphy get home. And they make an even bigger mess.  So, I never actually get to stop and do what I need to do.

I just can't focus when the house is a mess.  It drives me crazy.

Anyway, to organize my thoughts for a sec, here's what I want to blog about in the near future:

We Heart Harlie 5k (back on September 30th!)
School pictures
Where we are with the trach/sleep study
BAHA update
Richmond Half marathon
Wonder by R.J. Palacio book review
Photo slideshow

Well, let me just get Halloween done now.

First, my little project...

Take a beautiful pumpkin

and paint it black. Twice.

Then sprinkle with glittery stuff.

Then add eyes, a mouth and six very large
pipe cleaner legs.  Isn't he a cutie?!
Thanks Martha Stewart kit at Target!

Harlie got to put on her costume at school for a character parade.  Terri (her nurse) took this photo of her.  There is something about it that I love.  

Harlie, Cooper and Murphy (aka Power Rangers)

Me in my Halloween wig, and Harlie.
So, I have to admit that I wasn't a huge fan of Harlie's costume.  But she picked it last year and I bought it last year.  But it was WAY too big for her, so I talked her into being a bee, and exchanged the costumes.  This year when we took the kids to the store, she picked that darn cat costume, AGAIN!  My niece Maggie was with us at the time and said, "Well, you might as well let her get it out of her system."  Wise words from a 20-year old.  It turned out pretty cute, and she was happy, so it's all good.  

And of course, Rooney had to get in on the fun...

Harlie gave him the bag.  He's such a good pup.  Here he is again after Harlie got to him...

Okay, that's it for now.  Hopefully I'll be able to update again soon!