Wednesday, June 13, 2012

Ortho Follow-up

Today's appointment went well, I think.  Just a brief overview...

This is the traffic we went through to get to the hospital in DC this morning.  Click on the photo to see it better.  Not that you don't know what heavy traffic looks like.  But, seriously?  How do these people do it every day???

Hello Northern Virginia!

Luckily, I managed to leave the house EARLY for this appointment.  Mark it on your calendars folks!  It CAN happen!  And I am proud to say that I even managed to work a shower in my schedule this morning.  (insert smug face here) I dedicate this to all my stay-at-home mom friends who know what an accomplishment it is to shower on a daily basis.  You know who you are!  So, that just proves if you pack all your crap the night before and your husband comes home early from the gym to help, miracles can happen.

Once we got off the interstate and onto First Street, she called "Mama" and I turned around to look at her and she signed "home."  I told her that we couldn't go home because we had to go see the doctor first and she started to cry.  Oh, break my heart.  This is the earliest she's gotten upset.  Usually it's when we pull into the parking lot.  So, she's clearly more aware of where we are, and where we are going and recognizes the way to Children's National.  So I told her it wouldn't hurt.  And that we were just going to do x-rays and talk to the doctor and that's it.  She stopped crying and that was that.  Whew.  The best part is that my word was true.  It didn't hurt and they only took x-rays and talked.  So, maybe she'll believe me when I say it will only hurt for a minute.  Or hold still and it will hurt less.  Wouldn't that be a nice change?

Okay medically speaking...

She's cleared for gymnastics again!  YAY!  But she said she doesn't want her high off the ground.  She wants to limit the risk of falling.  She has some stiff areas in her back (plus screws), and she could seriously injure herself.  So, no worries!  Do you think I could wrap her in bubble wrap and pull it off as a fashion statement? Because I gotta tell you - kindergarten can be rough!

From here on out we will have yearly check-ups.  So, that's good.  But, when she gets closer to age 10, we will increase the appointments because there is usually a growth spurt at that time and she wants to watch her more closely then.  Of course, if we see a problem or her x-rays show issues, then that plan will change.

She said that normally one's spine has some curve in the thoracic area (top) and is straighter in the lumbar area (middle).  Harlie's is opposite.  That's what throws her forward and makes her walk a little hunched over.  I think she said she has a 48 degree curve forward.  Remember that she has kyphosis scoliosis, which is when the spine curves forwards as opposed to scoliosis, which curves right or left.  Here are her x-rays from today... they are copies of the films, and then I took a picture of the copy with my cell, so they aren't the best quality.

Side view.
That object on the left is her pacemaker generator.
And those screws look so long!

You can see her trach tube at the very top.
There are coils in her lungs (in the black space).  The squiggly lines
are the wires that hold the sternum together after OHS.
And you can see the pacemaker leads and generator
and screws and hardware.
It's a busy little body!
I asked her if we are done with spinal surgeries.  She said she would be very happy if we are.  But, she doesn't know.  Only time will tell.  She hopes that her curve forward will not get much worse.  She said if it gets to the point where surgery is necessary, it won't be pretty.  She would have to insert rods and because she has so little fat on her body, the rods would protrude and be visible.  Ew.  She also noted that she thinks that's what happened to her back after surgery.  She thinks that since there's so little fat protection that it rubbed on the cast and caused the breakdown and subsequent infection.

She's also cleared to carry her own backpack.

So, that information was given to me in about 8 minutes' time.  Maybe 10, tops.  I don't mess around and neither do surgeons.  So, here's how it breaks down...

We left the house at 7:20am
Her appointment was at 9:45am
We checked in at 9:46am (security check-in to get into the hospital was a long process)
We were back in the car, driving away at 12:40pm.
I had to go to a drive through for lunch (ugh!) I specifically took an exit that would lead me to a Chick-fil-a.  But it was closed for renovations!  Major ugh!  So, I had to go to Wendy's.  Which meant I had to get a small vanilla Frosty.  Damn you Chick-fil-a!!!
We got home at a little after 3pm.

So, in a little less than 8 hours, I got in the neighborhood of 8-10 minutes in front of the doctor.  That's efficient.

I love my life.

Oh, and I think I mentioned that I'm going to start submitting my mileage for reimbursement through Logisticare.  Well, I went to write down the mileage (which was 220, thank you very much) and other info on my form (which is barely legible, by the way, since it's clearly a copy from a copy from a copy, etc.) they mailed to me to use as MY original and I see that they require a physician's signature.

Damn it!

Tom said he'll fax it to them tomorrow for me.  Of course, by the time it gets faxed to them, and then faxed back to us - who the hell will be able to read it?!

Must not give up.  At 40 cents per mile, it will add up.  I can't believe I am just now doing this.  After all the freaking miles I have driven!!!!

Must focus on the positive.  I can now sign Harlie up for gymnastics!  And she is feeling SO much better that I cancelled her appointment to see the allergist tomorrow.  YAY!!!  Now we know we can keep this little guy...


He got a bath tonight and he smells so good!  Apparently he had some unlucky timing yesterday morning on the walk to school.  He walked under a much larger dog, who shall remain nameless, Custer, ;-) right as he was about to pee so Rooney got a little "wet."  Ew.  Tom hosed him off, but I wanted him to have a proper bath after that.

Okay, it was a long day and I need to get to bed.

Thanks!
~Christy

3 comments:

B-Mama said...

Glad to hear about all the successes of late... aside from Rooney/Custer's poor timing. We're so sorry! Apparently nothing's stopping him from going to the bathroom! lol Poor little Rooney!! I'm glad he's clean and fresh now. xo :)

grandma said...

So happy to hear that Harlie is healing and can go back to gymnastics...I know how much she loves it! Great to hear some positives in your life! As for poor Rooney...He needs to grow up to be withh the big boys!!! he is just too cute and I cannot wait to spoil him (and the boys) soon.

Susan said...

Oh Christy that breaks my heart to think of Harlie crying because she knew where she was going. Our kids are getting older, and there is bad but also good. I'm so glad that Harlie understood you, trusted you and it calmed her. How fantastic is that!? Yay for being on time! I know how rare that is and how good it feels! I'm glad the appointment went well and Harlie is cleared for gymnastics. I can't believe you have to drive 220 miles to see your doc. It really makes me appreciate our Children's hosptial being 20 miles away, and it used to be about 7! I'm glad you can get reimbursement.

I'm glad Harlie's feeling better and Roonie can stay. I'm sure you are very relieved. XOXO.