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
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