Right TMJ Replacement Surgery

Wow. I'm so sorry, I never updated the blog during/after her last surgery. I have worked on some posts, but haven't hit the publish button. 

Well, for now here's the summary:

In March 2023 she had her right TMJ removed (infection) and he put in a temporary spacer. Her recovery was okay. Certainly not as bad as the original placement of both TMJs in April 2021. Which is great, because that was a nightmare. Anyway, if my memory is correct, Tom had a big job starting a day or two after her surgery, so he had to fly home. We were planning on him returning after he got the job going to help us get home. But, that didn't work out. I think it was going to be way more costly for us to wait for him to fly up (another night in the air b&b) and then have all three of us fly back home. So, I said I was just going to have to be a big girl and get her home by myself. 

Well, I'm not going to do that again. That was awful. I just don't have enough hands to push her in her wheelchair and pull her oxygen concentrator and luggage - impossible! I remember getting out of the Uber and having to unload everything (including putting her wheelchair back together) and then I would take the luggage a ways, then leave it, go back for Harlie, then take the luggage further, go back for Harlie, etc. Some nice ladies helped me after they watched me for a sec, so I was grateful for them. But, even after checking the luggage, I had Harlie and the oxygen concentrator. By far, the worst leg of the trip was getting OFF the plane. The ramp that you walk up from the plane to the gate is steep and has bumps from one ramp to another. I couldn't get Harlie up the bump with one hand (and pull the concentrator with the other). I REALLY struggled and finally one of the employees came to help me. He pushed Harlie up and I got the concentrator. Sounds nice, right? No, the worst part is that he looked completely annoyed at having to help me. It was the WORST. 

Anyway, we learned - not going to do that again. 

Okay, back to current events... We flew up early Monday morning. We had to wake up at 3:20am to get us ready and to the airport by 5am. Even with us having TSA, going through security with her takes forever. We got to Boston with plenty of time before her first appointment at 10:30am. So, we took our luggage to the hotel and put it away for the day. Then we went to get breakfast. Then headed to the hospital.

She had several pre-op appointments...

I haven't been able to update you on what's going on with her pacemaker - but back in August it was confirmed that one of her pacemaker leads is going bad. The leads went in during her very first heart surgery at just four days old. So, those leads are 17 years old now! I'll have to save those details for another post. Just know that this is an issue (which will require open chest surgery at some point in the future) and another thing they just wanted to be on top of. 

We went and got dinner and then watched Narnia with Harlie. 

We had to be at the hospital at 7:15am for an 8:45am surgery time. 

I feel like I look so tired in this photo. It is because I am. Haha!

I forgot to mention that back in the summer, her earring in her left ear worked its way out of her tiny little lobe. So weird. No trauma, no big earrings, we have no idea. So, I sent her surgeon a picture of it and he said he could fix while he was in there. 

All that went fine except they were delayed because they were trying to find her an ICU bed to go to post op. They wouldn't give the green light to start until that was confirmed. During the wait, I reminded her that she's going to hurt for a few days again. She said, "I know." Then I told her that in time, she will feel as good as she does right now. She said, "I know." She's so good, y'all. She's so good waiting for surgery. She never complains about being hungry - or about anything at all. It really struck me how good she is (and has been her whole life) while we had to listen to the parent next to us talk on speaker phone (ugh) and her child yelled and screamed that she was hungry and wanted to go home. Now, don't get me wrong - I kinda felt bad for her. No kid wants to go through surgery. But, it just reminded me that we have NEVER had to deal with Harlie like that. Even when she was a baby, or a toddler. It is like she just knew she had to deal with it. 

Anyway, they finally took her back at 10:30am. They said they anticipated a four-hour surgery. We went downstairs and got some food. Tom's messenger bag was breaking, so we went to REI to get him something that would make it through this stay. It was funny, he bought that bag during her first surgery in Boston in 2012. Ahhh, the memories. We had NO idea we would STILL be working on getting her a better airway 11 years later. Anyway, sitting around a waiting room all day has gotten so painful. We've just done it too many times. So, we spent most of the day outside, walking around. We got phone calls every 90 minutes to let us know what was going on. 

Dr. Resnick came to get us around 4pm. He said overall things went well. He replaced the temporary spacer with her new titanium TMJ. He said sometimes when one side doesn't have as much support as the other, it can dislocate the "good" side. Which is what happened. He thought that would be an easy/fairly quick adjustment/fix. But, as everything goes with Harlie - it turned out to be more complicated. He said the dislocation had clearly happened months ago and that soft tissue had grown all around the joint. So, he ended up having to make two incisions on her left side and had to manipulate that side way more than he thought. That means she will definitely have some pain and bruising on that side, too. But, he was able to wash the left TMJ and fix it, so that's good. In total she has four incisions, two on each side. 

He said anytime you're working around/in the mouth - it is very hard, if not impossible to keep things sterile. But, he didn't have to work in her mouth this time. So, hopefully, she will be okay as far as infection goes. We will keep her on her antibiotic for another 4-6 weeks, just to be on the safe side. She's been on this antibiotic since August of 2021, so we will be happy to be done with that medication! 

Anyway, Dr. Resnick said that unfortunately, they still didn't have an ICU bed for her! So, she was hanging in the OR until they could find her one. It is now 6:15pm, and I don't think she has an ICU bed yet. She is supposed to go to the cardiac ICU (CICU) but we checked in with them and they said she hasn't come up yet. Crazy! 

I think when I blog and share stuff with you, I really try to focus on the positive. It is better for me to do that for my own good, too. However, there is always bad stuff. We definitely worry about her. I mean, worry about something going wrong. She's had well over 100 surgeries now and so many of them have been really big ones. She's getting older and her body has been through so much. We can't help but fear something catastrophic happening. Especially when we've had several of those experiences now. 

So, at 4pm we were told that she was just hanging out in the OR, waiting for a bed. Then, I don't know, an hour or so later we were told that she had a bed in CICU and that we should go get our badges, then go up to the CICU waiting area. When we got here (just after 5pm) the CICU said they didn't have her as a patient yet - so she hasn't come up. Now it is 6:30 and she's still not up?!  What the hell? I'm telling you, this is like a roller coaster from hell. We worry, we're told all is okay, now we're worrying again. The worrying about her well being is EXHAUSTING. Add that on to our physical tiredness and I don't know how we live like this! 

Okay, I just went and asked again. She told me that she JUST got up to the CICU and they are getting her settled now. Whew! They will call us when we can go see her. Geez. This life...

I think I'll sign off for today. I'll write again tomorrow. 

Thank you for all the love, thoughts and prayers! We appreciate you all more than you know!

Much love,

Christy xo