Whew! IT'S OVER!!! WOOHOO!!
We arrived at radiology right on time - 7:30am. I'm only going to hit the highlights. Because to be honest - I am beat!
After a lot of waiting and lots of questions a doctor came in to talk details. She said that combining a non-radiology procedure (dental impressions, in our case) with a CT scan is unheard of. She wanted me to know and understand that they were making an unprecedented exception. In all of her 17 years here, it has never happened. And I get that. She said they get requests all the time to add different things to a radiology procedure to take advantage of a child being under anesthesia - but they always say no. They have to. Otherwise they would turn into a mini-OR and they would get so backed-up since all the machines are already booked as it is.
So, I guess this means that we're somewhat special. For a second, I'm like, "wow, that's pretty cool." And then the reality of that sinks in, and I think, "Wow, that really sucks."
I'll try to make this simple...
She wanted to go with an anesthetic that I had never heard of (not that that means anything, really) and can't remember what it was called now (started with a P). The negatives were that the medicine would linger in her system for 48 hours, it would not relax her muscles like general anesthesia and that kids tend to be more agitated when they wake.
Way to sell it, Doc!
Um, no thank you!
In her defense, the reason why she wanted to go with that particular anesthesia is because it is less risky than general anesthesia. Especially considering they didn't know her and she is a complicated kid - heart wise (and otherwise, but in that situation, her heart is the main issue).
My problems with that were:
1. Her muscles (specifically her jaw muscles) need to relax enough that they can get the dental impressions.
2. At that time, we had another appointment in the afternoon and then I have to put her on a plane tomorrow.
3. She's been under general anesthesia more times than I can recall - more than 30 - and we've always been perfectly fine. Her one risky episode was not anesthesia-related. It was infection related.
My thinking was that it was actually more risky to NOT do general anesthesia - in the big picture, I mean. The dental impressions were a must. Period. If she went under and they were unable to get them, we'd be screwed.
Not only would she have to go under general anesthesia in the very near future anyway, we'd have to rearrange our flights, and it would be a general nightmare.
Not worth it. Especially considering I had never heard of that med before so what if she had a reaction? Go with what you know or what you don't?
I hated to do it - but I had to put my foot down. And I know she was annoyed. And I can understand her view point. She's been through many years of education, she's probably super freaking smart, she makes a ton of money and the bottom line is that she knows WAY more than me when it comes to this stuff. And I'm a stay at home mom.
However, she does not have the big picture in mind. And she will only have to deal with Harlie, and the consequences of these decisions for a short time. And, she just met her. And I know her better than anyone should know anybody.
Maggie said that during our talk I said something and bent down to get my notebook from my bag when the doctor looked at her co-worker (I have NO idea who he was or what his position was since he did not introduce himself) and gave him this "look" like "oh brother" or something.
I know I wasn't wrong in my standing. But it still stings to think someone looked at me and thought something not positive. Especially when I work SO FREAKING HARD to do the BEST thing for my wonderful daughter whom I love more than life itself. Just look at her already!
Two things really put me off -
1. She asked me why we've spread our care all over the place (Norfolk, Richmond, DC and now Boston, MA). To me, I think the answer is really obvious - because I freaking have to, that's why. Same reason why I do a bunch of other crap I hate. I can guarantee you it's not because I'm bored, have too much time on my hands or that I WANT to. For crying old loud. Something about the way she asked me that made me want to come out of my skin.
2. She asked me why they want dental impressions. Really? Does it matter? You just told me that combining procedures was a first in your 17 years. Do you think it's not absolutely necessary?
After I told her I just wasn't comfortable trying a new med this visit, she left the room.
And I just need to say that doing this and standing my ground, or arguing my point, does not come easy. You'd think it does since I am advocating for Harlie - but it doesn't. So, if you're reading this and think you'd be all Mama Bear or something - unless you've been in these shoes, you can't say. Doctors have this air about them. And I would venture to say that most people think they (the docs) know better - so I really don't think arguing comes naturally. At least it doesn't to me. I'm a "can't we all just get along" kinda girl.
Anyway, the bottom line is that they went with general anesthesia. And then the doc came back, she was super nice. Maybe she thought about it and understood my point. I made sure that I thanked her and let her know how much I appreciated her making the exception for Harlie. Because I really do.
So, the dentist came in and got the impressions. He came out to the waiting room to tell me that it was done. AND THAT SHE LOST A FREAKING TOOTH!!! UGH!
Maybe this shouldn't bother me as much as it does. But I am SO over her losing her teeth before they are ready to come out. Enough already! I've officially lost count of the teeth that she has lost while in the hospital. It really is the little things that hurt the most.
He also said that they wanted to put some sort of retainer in her mouth post-op to help things progress - but that he thought that was unlikely. He said her mouth is just too small. There's simply no room in there for anything else. Sigh. Her jaw abnormality is severe and as much as I try to believe it's fine, it's not. It's severe. And that's that.
I still have hope we can turn things around for her. And the surgeons seem to, too. If you have some good connections with the Man upstairs - feel free to pray!
Oh, and I can't remember why - but the doc wanted her to have an IV before she went into the CT scan room. We originally said that they would get an IV after she was under. They just hook up the vent with sleepy stuff to her trach and "night-night!" I really don't know why they couldn't do the IV afterwards. And maybe I should have argued that, too. But, I didn't want to push my luck.
So, bring on the torture. Thank goodness the nurse got it in one stick. Woohoo! Although Harlie fought like nobody's business. She almost head-butted me and I can tell you that it would have HURT. She was really fighting hard!
The CT scan took forever. They wanted to confirm what the surgeon wanted, so he had to be called out of surgery. Oh! And I got a kick out of this...
I knew that she was going to have some blood work later in the day so I told them they had to get what they needed while she had an IV. So, they did. Although she fights anything having to do with touching the IV. She's insane.
After that we went to wind down for a little while till we had to go to our next appointment. They have this garden area and there was live music and and it was really nice. The weather was awesome. Not too hot and sunny.
This is such a nice hospital. I love it.
After that, we went to pre-op. I was thinking we would be done relatively quickly. We had already met with cardiac anesthesia (since they had to do general anesthesia) and they already took blood. So, there wasn't much else left. If we got out of there early enough, we were going to go back down towards the aquarium and let Harlie ride the carousel.
Boy, was I wrong!
One of the blood samples clotted, so they had to repeat it. UGH!!!!!!!! I made them justify that they absolutely, without a doubt, needed it today. They seemed sympathetic. But it still had to be done.
After all questions were answered (10 times per question at least for each specialty and department), we headed on over to the lab. Harlie was fine until she got called back and saw "the" chair. She knew what was going down and she was not happy about it. She started to cry and it broke my heart. It didn't help that I had to be the one to pick her up (against her will) and put her in my lap and then bear hug her to hold her down.
It took 5 adults. And two attempts. We were all sweating and the room (which was tiny) was hot as hell when we were done. One of the nurses grabbed some paper and started fanning Harlie. Something about her doing that touched me. It was a very sweet gesture, and did not go unnoticed. I HATE holding her down like that. But I hate the thought of someone else doing it more. In my mind I am hugging her. Really, really tight. And I hope that she thinks that, too.
After that... we were DONE. Hallelujah!
Of course it was after 4pm, and there was no way in hell we were going anywhere. They have a playground there and I asked Harlie if she wanted to play on it. She said, no. So, we went back to the hotel.
I left Maggie and Harlie relaxing, watching tv, while I walked to the nearest liquor store. I'm sorry, but I had to have a drink!
It is now almost 10pm and Harlie is still awake. I don't get her at all. She's had such a rough day. Why isn't she sleeping????
We are almost packed. I packed everything I can for now. I want to go home. And so does Harlie. She misses her Daddy (she has signed for him everyday).
It is daunting to think that we will have to come back. And learn a new ICU and new nurses and doctors. And then leave. Just to return again. And again. And again.
I hope that we've made the right decision and picked the right team to turn our lives around.
Okay, I have GOT to go. I'm beat. We have an early morning tomorrow. Thanks for all your thoughts and prayers this week. They were very much appreciated!!! We couldn't survive this without your support!
Monument Avenue 10K!
2 weeks ago