Monday, April 9, 2012

Just some updates...


Everything is still a go for Harlie's fibula free flap jaw reconstruction (I hope I have that right) August 24th.  There are a bunch of things we need to do prior to surgery (mouth mold, CT scans, x-rays, pre-op stuff, etc.).  I asked them if we could do all that stuff up there at the pre-op a month before surgery instead of having to do it here and mail it back up there.  Luckily, a month's time is enough - so we are going to Boston to do all that stuff.  She said it's a lot - so it will take us 2 or 3 days.  So, around July 24th to the 27th is when we'll be there next.  It will be here before we know it.

I HATE that surgery is August 24th.  I SO wanted it to be more towards the beginning of the summer.  She will most definitely miss the first few days/first week of school.  I really hope this won't be a HUGE negative in terms of her making friends and feeling comfortable.  And I just realized that if she's still in Boston for the start of school, that means that I will miss Murphy's first day of school, too!  Ugh.

Anyway, Harlie definitely qualifies for summer school.  So, her hearing impaired teacher is going to focus on the material that they will be covering the first few weeks of school to try to get her as prepared as possible.  This is the year that really counts.  She needs to keep up with the class as much as possible. So far this year she's missed over 5 weeks of school.  That just can't happen next year.  (That's more of an out-loud wish versus a statement.)


A few weeks ago, Harlie came home from an appointment in DC with a Holter monitor.  She wore it for 24+ hours.  And then I mailed it back to them to analyze.  Just for kicks, I thought I'd share with you some of the report I recently received in the mail:

The Holter monitor revealed evidence for sick sinus syndrome, periods of low right atrial rhythm alternating with junctional rhythm, and AAI pacing.  At the time of the max heart rate there appeared to be junctional tachycardia to a heart rate of 87 beats per minute.  In addition, there were periods of first and second degree AV block with rare AV nodal echo beats.  The longest R-R interval measured 2.2 seconds.  Atrial sensing was normal.  No symptoms were reported in the diary.

While in the hospital, Harlie had a persistent junctional tachycardia making it difficult to program her pacemaker.  She was subsequent reprogrammed from the VVI to AAI mode.  Given her first and second degree AV block we will reprogram the device to the DDD mode.  It may be tricky to ensure that she does not have persistent AV reciprocating possibly resulting in a sustained supraventricular tachcycardia secondary to her AV reciprocation.

Whew!  Got that?  So, basically her heart is beating, right?  Great!  That's what I'm getting out of it for now.  Until tomorrow...

Sometimes it pisses me off all the crap I have to learn.  I don't want to learn this stuff.  My brain is at full capacity for medical information.  It might look all glamorous.  But, it's really not.

Our appointment to see her pacemaker doc is tomorrow.  We haven't seen him since the last appointment when they put the Holter monitor on her.  So, one thing I can guess from the above report is that they are going to change it to the DDD mode tomorrow.  When we were there last they told me that they were going to let her heart rate get as low as 50 beats per minute during her sleep time (8pm to 6am).  So, I set her alarm at 45.  But three nights it has alarmed at 45 or lower.  So, maybe the DDD mode will help with that.  I'll just have to tell them and see what they say.

The other day I was at a friend's house and her kids were playing with a real cool toy - Magna-Tiles.  I watched them play and thought, Oh, I'm totally going to get these for my kids - they would love them!  

And then I remembered.  Harlie can't play with magnets.  Damn.  Some things just hurt.  No getting around it.

Her steri-strips finally came off her incision.  I think her incision looks fine, medically speaking.  But, honestly, I think the whole area looks awful.  It's all bumpy, or hilly, rather.  It just looks weird.  She just doesn't have enough fat to hide the generator, so it protrudes.  And the incision almost is concave in one area.  Add that to the protruding bony spot in her old sternotomy area and... like I said, it's weird looking.  It's just not what you picture when you think of how a 5-year old's chest should look.

When Harlie went back to school after the pacemaker surgery, she lifted up her shirt and showed a friend her "boo boo."  When Terri told me that I almost fell over.  She has NEVER done that before.  And showing people boo boos is a completely normal 5-year old thing to do!  She has definitely been WAY more aware of her incision this time - much more so than ever before.  I think at first I was interpreting that as pain or discomfort for her - but now I think it's just maturity.  And her last major surgery was on her back - and she couldn't see it (thank God!).  Oh, I don't want to even think about her next one (jaw).


So, I finally contacted Harlie's ENT in DC and came clean about her wearing a cap during the day (he didn't know).  I also asked about surgically placing a bone anchored hearing aid (BAHA).  We will need to meet with the audiologist there to see if Harlie's skull is ready for it.  I think it has to be a certain thickness or something before they can do it.  I know that doing the BAHA surgery this year would be too much.  The Pacemaker, BAHA and jaw reconstruction - all within 9 months or less - is probably too much.  But, there's a part of me that says waiting another year to do the BAHA is too long.  I've heard that you have to wait three months before you can use the anchor (to let it heal) so, no hearing aid can be worn on that side for that time (which means most get that surgery close to the summer).  And I've heard that kids who wore a soft band one and then got a BAHA said that the hearing quality is so much better with the BAHA.  To lose a whole year of better hearing - during a foundation-building year - seems unwise.

Sometimes the decisions we have to make really make me mad.  It is harder than you would think to balance her overall comfort/happiness with what's best for her in the big picture.  Reminds me of this post.

Anyway, that's it for today.  I have to vacuum the downstairs - for the millionth time - because Rooney puts anything and everything in his mouth.

Thanks for reading!


grandma said...

I would not want to be in your shoes for any of these decisions..but will support whatever decision you make for Harlie. You do a fantastic job raising her and make hard decisions everyday of her life. I know that God is watching and helping you..just put your trust in Him.

Susan said...

I hear you Christy! All of this decision making depletes a person's energy. You are a great advocate for Harlie and I have full confidence that you will consider all the factors when making the decisions. Sometimes unfortunately there is no easy or even right decision when it comes to this stuff and we are just left with the feeling it's not good enough but we can only work within the options we are given. Hugs my friend.

I do hope you'll follow up with me with a private conversation about the ENT and the cap.