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

Ortho Appointment

Today we went to DC for another follow-up appointment with her ortho surgeon.  All went well.  As usual, they took some x-rays.  Harlie is so cooperative now and stands the way they tell her to and actually holds still.  I am so proud!  That seems like a "big girl" thing to do.

Her surgeon said her x-rays look good.  The hardware looks secure and is most likely fused together pretty good now.  She said that if Harlie had not gotten that infection (which forced her to remove some of the bone graft in the upper portion of the surgical site) she would let her come out of the brace.  Darn it!  It would have been AWESOME if we could've ditched the brace in this summer heat!

She wanted to see how Harlie moved without the brace and immediately she started acting all goofy.  It took all of two seconds for her surgeon to say that she needed to stay in the brace for another few months.  She said she's just too worried that the upper portion hasn't had enough time to solidly fuse together.

I asked her when she wanted to see Harlie again and she said in three months.  Three more months in the brace?!?!  So, I asked her if it would be okay to see her again in two months instead - so that if she felt comfortable then, Harlie could be brace-free for school.  Luckily she said that would be fine.  It's probably not that big of a deal.  Harlie doesn't complain about it at all.  But, the brace does make it more difficult for her to pull her pants up and down and it would be nice if she could do that by herself for school.  The brace comes down past her hips - which means her shorts either have to be under the brace or ride really low on her.  And all her shorts have to be elastic - button-up ones are harder for her to wear.

Anyway, I told her surgeon that Harlie points to her back at least once a day and signs "hurt."  She wasn't concerned.  I guess that's normal.  I just wish I could do something for her.

Since she seemed to be keeping her in the brace for good measure - I went on ahead and asked her if it would be okay to take the brace off for more than one hour some days - so I could take her to the pool.  And she said that would be fine.  She even said we could reduce her wearing it from 23 hours a day to 21.  WOW!  (Said sarcastically, of course.)  But, at least I have her blessing now for the pool, so I don't have to feel all weird about that anymore.

And add this appointment to another doctor visit that didn't include pain for Harlie.  Harlie didn't cry when we pulled into the parking lot (like she did for the last visit) and was completely fine and happy the whole time.

Thanks!
~Christy

Ortho Appointment Tomorrow

Just a real quick one tonight.  We have a very busy day tomorrow.  I am going to try to squeeze in some preschool for both Harlie and Cooper, a haircut for Harlie, and an appointment for me before heading up to Northern Virginia for Harlie's orthopedic appointment at 2:30pm (Tom says it's impossible and that I have completely overbooked the morning, which is probably true).

I think the last time she saw this doc was a year ago.  Probably longer.  And she wanted to see Harlie in six months.  But, that just couldn't happen with Harlie's heart surgery this summer.  There's only so much we can do.  It kills me how busy Harlie's schedule is - and that she can't accommodate every doctor's requests.  There's just too many!!!

And she's walking, jumping a little, trying to run (getting faster) and she's in gymnastics.  So, it's kinda easy to put her spinal issues on the back burner.  I'm hoping that since she's doing all those things, we can continue to put off her spinal fusion surgery (if that's still the way the surgeon wants to go).

The last time we spoke, the surgeon said that the longer we put it off, the more difficult the surgery will be (on both the surgeon and Harlie).  But the reason why we want to put it off is so she can grow.  Once you fuse the vertebra together, there will be no more growth in those areas.  And she's only four and still has a lot of growing to do.  So, we'll just have to see what the x-rays show tomorrow.

I have really enjoyed these long breaks from serious appointments.  And I'm not looking forward to the decisions regarding her spine.  No fun!!!

As always, I'll let you know how it goes!  Wish us luck!

Thanks!
~Christy

Orthopaedic Appointment

So, we went to DC on Tuesday to meet another orthopaedic surgeon about Harlie's spinal issues. Well, actually we went to the outpatient clinic in Fairfax. That location got us an appointment faster and, actually, it was a lot easier and quicker to get to. This surgeon specializes in spinal issues which makes me feel better. And she is at Children's National, which is where her heart surgeon is, so I certainly feel more comfortable with her having this kind of surgery there - where she's already well known by the cardiac team. Anyway, I liked her a lot and I feel like she took her time educating me on what Harlie has and what it means.

Basically, Harlie has a few issues:

1. cervical spine deformities - missing some vertebra and she has some fusion (doesn't need attention at this time)

2. Lumbar spine deformities - butterfly vertebrae (1 location), and 1 hemivertebrae (half a vertebral body)

3. Sacrum deformity - 1 hemivertebrae at the very bottom

The outward curvature that you see in this picture is called Congenital Kyphosis Scoliosis.




I've done some research trying to find a good site that explains it well but I had no luck. From what I can gather it is not very common. The congenital version, I mean. Older people can develop kyphosis over time, but that's not the same thing.

Anyway, she said the area that is most severe is in her sacrum. The hemivertebrae there is causing the tilting in her hips. She said that there are two options for correction.

One option is to remove the hemivertebra, in both locations, then fuse the surrounding vertebra in both locations. This is appealing because it will most likely straighten her spine immediately. The negative with this option is that because of the fusion necessary, it will leave her little room to grow. And she means growth in her torso. Which is important to give your heart and lungs the room they need to function properly.

The second option is to put in growth rods. While this might seem appealing to optimize her growth potential, there are some negatives. One is that it puts her in the OR every 6 months for adjustment. And it might not work on the hemivertebra as effectively as removing them, which means we might end up having to remove them anyway. At least that's what I think she said. If there is the option to do the growth rods first, and then removing the hemivertebra, I don't know. And that sounds quite painful and risky to me.

And to make things even better, if I understood her correctly, since she has abnormalities in her vertebra to begin with, her growth potential is questionable. I think she said that since it isn't normal, then normal growth can't be assumed. Or something along those lines.

She said that we will have to do something within the next 6 to 12 months. I told her about her upcoming heart surgery and potential craniofacial surgery (will know more about that next week). She said that both of those surgeries could come first and if necessary we could push her surgery back a little more to give her a little break. I just think that those 3 surgeries are way too much for her in a 12 month period. I mean she's just 2 for crying out loud! But the risk is that the longer we wait to do surgery, the worse it becomes and more difficult the correction will be.

Anyway, Harlie will have to have an MRI and CT scan before surgery. So she said that she would talk to Harlie's cardiologist up there to see if we can work those tests in during her stay/recovery from heart surgery. The MRI is to make sure there are no issues with her spinal cord and the CT scan is to see a full view of the bones.

I think that about sums it up.

Oh, and after that appointment, we left and rushed back to Richmond to take Cooper to the doctor in the afternoon. He has his 4th ear infection (and he's just 4 months old!). I don't know how old they want kids to be before they get tubes. My doc said that the youngest he's had get them is 6 months. Which is really quite funny to me. I mean, I understand it, of course. But, Harlie had heart surgery at 4 days old, and she was born 3 weeks early! So basically she had a major surgery at 37 weeks gestation. So funny all the fuss for ear tubes. Clearly, my perspective is different, well, unique perhaps. Not normal at all. But what is anyway?

Oh, and Cooper weighs 16 pounds. Boy is he chubby! It is so much fun having a chubby baby.

Well, that's it for tonight. Take care,
Christy