So, I got some bad news today. I was on the phone for a while today with the Radiology department at the children's hospital in DC. Harlie is scheduled for her CT scans at 8:30 am on Friday. Well, after several phone calls and difficult conversations - it turns out that we have to be at the hospital at freaking 6am Friday morning. Which means we have to leave at freaking 4am! This is going to cause one heck of a crummy chain reaction, that's for sure.
There is so much to this story, it is hard to figure out where to start! Honestly, I feel sorry for anyone reading this post. It might make your head spin.
A few weeks ago, we got a second opinion from a plastic surgeon at the hospital in DC. The plastic surgeon that did her first jaw surgery is in Norfolk, VA. So, Tom and I went and met with the DC guy about Harlie's jaw. But he can't really tell us anything until he sees what's going on inside. Which means that he needs to see CT scans - current ones.
One thing to keep in mind here is that getting a second opinion is not an easy thing to accomplish. It took THREE months to get that appointment. In a perfect world, she would have gotten the CT scans first - but the surgeon needs to order them, and in order to order them, he has to see you first.
She needs CT scans for her spinal surgery. I started working on getting the CT scans scheduled back in JULY! And she will finally get them October 9th.
Now I knew that the plastic surgeon would want them, too. So, I made the CT scan appointment for after the plastic surgeon appointment so he could put his order in and they could do all of them at once, to consolidate her anesthesia time.
In order to truly get a second opinion on her jaw, we'll also need to meet with her surgeon in Norfolk. And he'll need current CT scans, too. So, to avoid having to get CT scans done in Norfolk, I will get a copy of the study done on Friday on disc and will take it to him.
Backing up for a sec, her original CT scan date was Wednesday October 14th. When I called to schedule the appointment with her Norfolk plastic surgeon, his assistant told me his next clinic day (he only has clinic days once a month) was Tuesday, October 13th. The day BEFORE her CT scans! So, that would mean I would have to wait till November to see him. But, he isn't going to have clinic in November because of some other thing - so that put us in December! Ugh! More time wasted!!! I was terribly bummed, but what are you going to do? I scheduled our appointment for December, kicking myself for this whole second opinion idea. Keep in mind that our original plan was for her to have jaw surgery this fall - which clearly, didn't happen.
So, I thought about it and decided it could not wait until December. So, I called and rescheduled the CT scans for Friday the 9th, and then called back her Norfolk guy and she got us in to see him on the 13th. Perfect. Whew.
Today, in my conversations with Radiology, it turns out they had her scheduled for conscious sedation instead of general anesthesia. And as I've been told, general anesthesia is "safer" for her in that she is more closely monitored by an anesthesiologist and better equipment (?). I haven't done much research on this because, quite frankly, there's only so much time in a day. And really, it doesn't matter because if an anesthesiologist tells me it's safer, well, I'm not going to argue.
Anyway, they told me that they didn't think they could get an anesthesiologist on such short notice. Short notice? I started working on this in JULY!!! The scheduler knew about her complexities because she is the one that told me she couldn't have an MRI - weeks ago. Anyway, I tried to stress how important the timing was of these CT scans. If she can't get them on Friday, that will set us back an additional TWO MONTHS!
So, after a while they called back and got everything straight. And that's when they told me about having to be there at 6am. Brandy is going to kill me when she finds out. And I swear, home health nurses just don't get paid what they deserve. But, given the crucial timing, I'm thankful it will still work out, so I guess I shouldn't complain.
Oh, they also told me that she was scheduled for a lumbar puncture (ew!). When I asked why the woman said, "because the patient is complaining of back pain." WHAT? I told her she needed to double check that paperwork, as my daughter just turned three, and she hasn't complained to me - much less to someone up there. She called me back to tell me that she's getting that so they can put contrast in there for the CT scans. Oh, okay. Now that makes sense. All's good. Although the words "lumbar puncture" kinda freak me out. Which is kinda funny considering all the words I've heard and learned since Harlie's birth.
So, Friday is going to be a loooooong day. And for the chain reaction... Saturday morning I will get up early in the am to go run 9 miles. The farthest I have ever run in my life. Exciting stuff.
Then as soon as I get back I will have just enough time to eat, and get ready to go to work. I'm working this Saturday where I used to work - just helping out when I can. I will work 12-5. Then I will come home and get ready to go to my 20 year high school reunion. 20 years. Holy moly. Talk about a long couple of days with lots of stuff packed in them.
And, if you read - and understood - all this, I'm proud of you.
Tomorrow is Harlie's hearing test. I'm dying to know the results. Her appointment is at 3:30.
Well, that's it for tonight. And I said that I didn't feel I was up to blogging tonight. Ha! I'm sure I'll regret it in the morning.
I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing. That wa...
These past few weeks, my thoughts have been consumed with Murphy and his struggles in first grade. His teacher and I have spoken numerous t...
Hi! Thank you for checking in on Harlie. Here’s a run down on what’s been up with her: November 13, Wednesday Her temp went up to 104.5 o...