Hi,
Thank you for all the kind messages, love and support! Y'all are the best!
Yesterday, we had to be at the hospital at 6am. It is still pretty chilly in Boston, so we thought about getting an Uber to the hospital, but ultimately decided just to walk. It is exactly one mile, and the walk does us well. I asked Harlie if she had any questions about the surgery and she said no. I struggle with how much to tell her prior to a surgery. I don't want her to worry about it too much. She knew it was surgery on her jaw. And she asked how long the metal would be there. I said, forever. Then she said, "You've got to be kidding me." Haha! It was awesome to be able to tell her that there will be no metal that she can see. All of it will be under her skin. That was horrible for her last time. But the good thing was that this surgery seemed less horrible in comparison.
Getting all ready for the OR...
Amy Vinson is her anesthesiologist and we love her. She actually rearranged her work schedule this week so she could be on Harlie's case. How awesome is that?! And she gave me an awesome question to ask the next anesthesia pre-op person I get. It makes me laugh every time I think about it. I hope they have a good sense of humor!
They took her back to the OR right on time and we went to go get some breakfast. They assign you to a pod in the waiting room and we went there and hung out for the rest of the day. We watched Netflix on my laptop. They call every 1.5 hours or so to give us an update on what's going on in the OR. Honestly, I don't need those updates. Haha! It is kinda gruesome to think about the details of what is actually happening in there (he's cutting the right side now), so I'd really rather not know.
At some point, I posted this pic (waiting in our pod) on Facebook and my friend, Laura, had some fun with it.
She shared this one...
Then this one...
And then she outdid herself with this one...
Hahahaha! It has made me laugh out loud every time I have looked at it! The edit to Tom's shirt is the best! It is even funnier because Tom does NOT 💗 NYC. Hahaha! So, thank you, Laura! Seriously, you made our day so much funnier! I'm laughing as I'm typing this and Tom just asked in an irritated way, "What are you giggling about?" I said, "These pictures." And then he said, "Well, it is annoying." Nice. Honeymoon's over, people.
Anyway, Dr. Resnick came out sometime around 2:30ish, and told us that the custom joints went in great. He looked pretty hopeful. He said he was able to really pull her jaw forward and get it in a much better position. The only concern he has is about her skin. He said it is really tight, stretched out in this new position. So, we'll see how that goes. He also said she has a loose tooth on the bottom front. Those are her permanent teeth, so this really bothers me. I'll go into more detail about that in a minute. There's more to that story.
He also said that Dr. Vinson was curious to see the difference in her airway after pulling her jaw forward. So, when he was done, she wanted to scope a little, to see how it looked. He said she was still in the OR and they would let us know when she was done and Harlie was ready to go upstairs to the CICU.
I try to make jokes when I can (and probably when I shouldn't), but the reality is that this is really, really hard. It hurts my stomach to hear and think about the details of what he actually had to do during surgery. The cutting of her jaw bone, the screwing and attaching and stretching, etc. And it isn't just THIS surgery. It is all of them. They are all so brutal. It just makes me so sad for her. And even though I believe our end goal is so important (an airway for crying out loud - I mean, it seems like that shouldn't be asking too much) I still worry that it is asking too much. And, then I start to think about the reality of recovery and how hard that is on all of us. Ugh. It really brings me down. It isn't like we are starting fresh for each surgery. Every time we go in to the hospital, I am carrying all the past hospitalizations with me. It just gets heavier and heavier each time.
The waiting room liaison called into the OR and they said it would be a while before they would send her up to the CICU. So, Tom made me go outside and walk to a restaurant for a quick beer and snack.
He knows me so well. And it is good to have a change of scenery and get some fresh air. While all that heavy stuff is still there, we can't focus on it for too long. We have to rise above it and appreciate the good. And yesterday afternoon the sun was out and it wasn't freezing and the beer tasted good. And I just have to go back and look at those photoshopped pics and then I laugh out loud again.
Dr. Vinson texted me and asked where we were. I told her we were drinking a beer. Haha! She said she had some stuff to do, so she said she would meet us in the lobby in a bit. So, we finished up and headed back to talk to her.
First, I LOVE that she was curious about Harlie's airway improvement and wanted to see for herself right then! It is clear she's invested and really cares! And, it kinda makes me feel supported in our decisions to keep fighting for this airway.
Anyway, she said she saw more than she's seen before (can't remember the parts she named that she saw). She said she could've gone farther, but she didn't want to push her luck and she didn't want to disturb that loose tooth. So, she stopped. Regardless, I think what she was able to see and do is already a really good sign! After talking with her, we headed up to Harlie's room.
Honestly, she looked better than I was expecting. She did lose some blood during the surgery, so they gave her more. That is a drain line you see in the photo.
Okay, back to her teeth...
Back in August 2017 (you can read about it here) when she had her Ankyloses release surgery (her jaw and base of her skull fused together, and cutting that apart is what brought her to needing that emergency trach) as part of that whole procedure, they had to remove a bunch of teeth. Some were deep in her bone, laying sideways and were never going to erupt. The removal of those teeth basically disrupted the support for the teeth that had come in. And within a few days she lost more teeth - including some permanent ones. Something about her losing her permanent teeth at 11 years old really bothered me. I mean, c'mon - can't the girl just keep her freaking teeth? WTH? Just to put it in perspective, these are the teeth I'm talking about...
So, after I let her doctors know how upsetting that was to me, they put a splint on her bottom, front teeth to stabilize them. The splint looked like braces. And they stayed there from August of 2017 till March 2021. It was very hard for her to brush those bottom teeth and after so long, it seemed like it would be okay to finally remove the splint, which was put in as a temporary measure to allow them time to heal and harden in place. So, after her surgery in May 2020, I asked them if we could remove them. They said yes.
It took a while to get it scheduled - should her orthodontist do it or her dentist? Luckily, they know each other and spoke about it. Her dentist said she wanted to do it so she could clean those teeth right after removing the splint. But, nothing is ever easy for Harlie. First, an orthodontist didn't put on the splint/braces. And the material they used was different - it was thicker wire, braided and they put a lot of composite on there - they wanted it to be really strong. So, after over an hour, she had to stop. The air thing they use to remove the composite material was tearing up her gums/lips and she was really struggling. When big tears started coming down Harlie's cheeks - while she was still being so cooperative - her dentist said she just couldn't put her through any more at that time. So, we scheduled another time to pick up where she left off. Then that day we had a snow storm, so her appointment was cancelled. We rescheduled again (March), and her dentist was able to remove it (Hallelujah!) and clean her teeth.
Now Dr. Resnick said that at least one permanent tooth is loose again. Ugh! That splint came off less than a month ago! So, they are going to have to put another splint on them. But he doesn't want that to happen right now. She needs to heal a little bit more. Then we are probably going to have to figure out a more permanent solution. It is stuff like this that wears me out. Well, that's stupid. All of it wears me out. But, these "little" things are never little - and they usually involve a lot of appointments and work. Hopefully she won't lose it before they can get another splint on.
Anyway, after spending some time in her room (Harlie slept the whole time) and with her nurse, answering questions, etc. we left to go get dinner.
It is now 6pm on Post-Op Day 1. I have been working on this post all day (with lots of interruptions and one small nap - don't judge, haha).
Today has been okay. As soon as we got in this morning, she signed that she hurt. She really didn't even need to sign it - we could tell just by looking at her. Poor thing! It kills us to see her in so much pain. She's on a bunch of stuff through her IV, so that's good. But, a kiddo who has had as many surgeries as she has had - builds up quite a tolerance to meds. And they always have to give her more than you'd think to help her. That's where being in the cardiac ICU really helps - they get that.
Her face isn't as swollen as it has been in the past. But, it is more bruised. You can see the bruising under her eyes and down her cheeks.
ENT came by and changed her trach. They put in a cuffed trach for the surgery since she has to go on a ventilator. And then they change it back to an uncuffed trach the day after. The manipulating of the trach ties seemed to hurt her (the incisions are right there). Plus, she has that drain line in her neck, so all the movement was hurting her. They also looked in her ear (she was communicating that her ear hurt) and it was bleeding some. He said that the temporomandibular wall is shared with her ear, so any manipulation can cause her ear to bleed. It can also cause shifting, and sometimes they have to put something in the ear canal to keep it open. But, he said he didn't think that was necessary, so that's good. The negative with any ear issues is that she can't wear her hearing aid. So, that's a bummer.
Since she was up and already bothered, her nurse pulled her Foley catheter. And she took out her arterial line. After all that, she wanted to sleep.
Harlie prefers her sleep masks, so I brought a couple...
Since she was sleeping soundly, we went and got lunch. When we got back I was so tired. There is something about a hospital room (the hum of the equipment maybe?) that makes it so easy to fall asleep. So I took a little nap.
Harlie slept for a few hours, so that's good.
Overall, today has been okay. Once you get Harlie's pain under control, she really seems okay. I mean, she's not happy. But, she's not mad. I asked her if she was mad at me earlier - because her expression told me she was mad. But she shook her head no. I think she just can't really change her expression right now. She tried to drink some water, but that was really difficult since she couldn't really move her lips or anything. Poor thing.
Okay, I'm going to wrap this up now. I'm going to include a pic of her drain line, for those of you that are curious. I'll just add it at the bottom.
Thank you for all the love!
Christy xo
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