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

Orthopaedic Appointment

On Thursday we had Harlie's yearly checkup with her orthopaedic surgeon here in Richmond. I have to admit that I wasn't prepared for what he said. I told him that I thought Harlie's spinal problem has gotten worse. At least I can see it is more prominent than it was. Here's a couple of pics so you can see what I'm talking about.





Even though it is definitely more noticeable, since she appears to be walking "fine" I haven't really been that concerned. They took an x-ray and after he took a look at it and came in and examined her he asked me what was going on with her, how's her breathing, etc. I gave him a brief rundown of this year's coming attractions and he thought for a minute. Then he said that it isn't urgent, but it is no longer a question of IF she has to have spinal surgery, it is a question of WHEN. He wants her to have an MRI to gather some more information and make sure there are no surprises prior to surgery. He ordered the MRI and they called me the very next day to give me the date - April 2nd.

Unfortunately I made the bad decision to take all my kids to the appointment. I should have called my mom for help. And to be honest, that was my plan originally, but things have been so hectic around here that I never made time for the 2 minute phone call. Dumb, I know. So, when it came time to get ready to go, we just packed them all up and Brandy and I went with all 3. I packed Murphy a backpack with books, a marker, a Leapster, a snack, a drink and yet he STILL got bored!

Anyway, because it was a mad house and I was a little flustered over Murphy (he can be VERY distracting) and since I was so surprised at what he said, I didn't think to ask some pretty important questions. Like, if you want her to have an MRI soon, then when are you thinking you need to do the surgery? Certainly he wouldn't want the information to be that old when he actually does the surgery. So he must be thinking sometime after her heart surgery (at least sometime this year) and that's just plain disappointing. And, what will happen if he doesn't do the surgery? What are we trying to avoid from happening? I'll deal with the risks from the surgery later (I think a little common sense comes to play here). I know that he wants to completely remove the hemivertebra (congenital malformation of the spine in which only half of a vertebral body develops) that's causing the scoliosis (it is acting like a wedge between normal vertebrae) and then fuse the surrounding vertebrae together. I have no information other than that.

Another big issue we will have to deal with is if we want her to have surgery here (in Richmond) or not. I really like her doctor (a surgeon). However, he operates at St. Mary's and quite frankly, I just don't feel comfortable with her having surgery (especially one of this magnitude) there. How many Harlie's do you think they operate on? And I don't mean the surgeon necessarily, I'm talking about the anesthesiologists. And then what would her care be like afterwards? St. Mary's isn't exactly known for their PICU. Ugh. It's during times like these that I feel very overwhelmed with her medical issues.


So in a nutshell, I'm very disappointed. I thought that this surgery would happen YEARS from now. And I know that this surgery is a big one and on top of her heart surgery, I just wonder how she'll handle it all (or us, for that matter). In all likelihood she will be stronger than the rest of us.

Well tomorrow Murphy has his first day at a new school! A friend and fellow parent of a child with a CHD recently opened a Montessori school. After learning about the philosophy behind the name I am SO excited! I took him there to meet the teacher on Friday and get the full tour. He loved it and when it was time to go he did NOT want to leave. Although it was a pain in the butt at the time, I am very glad that he liked it that much.

Well, it is late and we have a VERY busy week. Tomorrow I have a doctor's appointment and Harlie has a pre-op appointment at the pediatrician's because on Tuesday she is finally getting another tube put in her ear in DC. Then on Wednesday Harlie has speech therapy and an upper GI at MCV to check on her Nissen. She is back to vomiting every day again (insert sad face here). It started out slow back in August and has progressed to sometimes several times a day. Bummer. Then on Thursday she has speech therapy and then gets her monthly RSV shot and Cooper has a well check. And on Friday Harlie has both speech and physical therapies. Whew!

Oh! But before I go... HERE WE GO STEELERS, HERE WE GO! Tom and I had a date night and we both went to the bar to watch the game with the club. If you're a Steeler fan, it was a great game!

Take care!
Christy