Pre-Op Day/Surgery Day - Left TMJ Replacement

May 4 - We had a 6am flight (which meant a 3am wake up time). This trip gets harder every time we do it. Packing is very difficult for me. I cannot start and finish a task without interruption - like packing my clothes, packing Harlie's clothes, packing my toiletries, packing Harlie's toiletries, packing Harlie's medical supplies, etc. I go around starting a task and I get to a point where I feel like I just can't do it anymore, so I go and try to complete a different task. This is really not very helpful and it really makes me feel pretty useless. Tom told me to make a list (I've made so many lists) but even that gets to be too much. 

Tom ended up having to help me finish them. Sometimes just not working on it alone can be a huge help. Anyway, all this to say that when we got to the airport, Tom asked me if I packed the trach collar mask/oxygen connector tubing for the flight. The increased altitude during the flight causes her oxygen saturations to decrease. So, she needs supplemental oxygen during a flight. 

Um. No. 😱 I thought he did since he had charged up the oxygen concentrator. Luckily, I did pack a trach collar and a new nebulizer kit, so he was able to use the nebulizer chamber as a connection from the oxygen tube to the trach collar so she could get oxygen during the flight. It was then that I realized that I didn't pack HMEs (heat and moisture exchangers). HMEs are vital when she's on oxygen and sleeping without humidity (which she has to do when we travel). Her trach will definitely get dry and she could plug. Maintaining a clear airway when she is dry is hard work. So, I really beat myself up. I mean, how could I forget such an important thing? You can't just go the store and by them! This is a serious problem! I replayed packing in my head over and over and I remembered holding a bag of them in my hand. I exchanged the bag for a different bag and couldn't remember why I did that. Ugh! I started catastrophizing (a cognitive distortion where individuals habitually assume the worst-case scenario, exaggerating the severity of situations and believing that negative outcomes are inevitable and unrecoverable). 

This has become a huge problem for me across the board (I mentioned it in my Fall 2025 post). Although, in my case - with Harlie - the potential outcomes are actual, real potential outcomes, I don't think I necessarily exaggerate them. Although, maybe that's another sign that I have it bad - since I can't even admit that there's an exaggeration. Although I can admit that I exaggerate in other life scenarios.

Since I'm on the subject and baring my soul anyway, I'll give you another crazy example. One time a while ago, Tom was out of town and he must have had the boys with him because it was just me and Harlie for the weekend. I wanted to go for a walk. As I was headed out the door, I thought, "what if I get hit by a car or abducted?" Then my thoughts just went downhill from there. What would happen to Harlie? How long before someone realized I wasn't where I was supposed to be? What would Harlie do? How long till she realized I had not made it home? Who would she tell and how? I had those thoughts even though I have gone on countless walks with no negative outcomes whatsoever! Most of the time, I can hear how crazy it sounds and I'm able to tell myself to stop. The problem is that it just happens. It happens with the ease of one breathing. You don't think about it - you just do it. I can only stop it once I realize what is happening. I cannot prevent myself from doing it in the first place, if that makes sense. 

Managing her airway without an HME is going to be more difficult. However, in reality, it is a one hour flight - and one night in the hotel. The odds of it being a real life risk are probably pretty low. But, I felt like it was a "HUUUUUGE problem" versus a "more work" problem. My brain starts to calculate the risks, all the potential outcomes and then searches for ways I can fix it. In this scenario - at the time it was happening, I was simply unable to see it as "more work" and it felt potentially life threatening. I can feel all the stress this kind of thinking causes throughout my entire body. It is very uncomfortable and I can feel the effects for many hours/days after, depending on how bad I feel the situation is. All of those feelings are because the whole process of catastrophizing triggers an intense "fight or flight" response, causing the body to experience high anxiety, increased heart rate and muscle tension. The brain interprets the imagined worst-case scenario as a real danger, leading to elevated stress hormones, physical discomfort, and potential panic, keeping the individual locked in a state of distress. 

In my walk example, it wasn't as bad, because I could tell myself I was being ridiculous before all of that response stuff happened. The catastrophizing only lasted for a few seconds. However, in the HME scenario - I did not feel like I was being ridiculous. I felt like we had a serious problem and I needed to figure out a way out of it before something terrible happened. So, as we were going through the airport and security, that was happening. So, it lasted WAY longer (like 15 or so minutes, which feels like an eternity). Plus, I was in a public place, so I was trying really hard to remain calm - even though I didn't feel anything close to calm. I wonder if that makes it worse since my body was trying to do a bunch of things at the same time? Anyway, once we got to the gate, I went alone to get some water. On my way there, Tom sent me this text:

So, I DID pack them! I almost cried - for real. That is why I put the bag back in the cabinet upstairs - because I put a bag in her suction machine bag, thus, we did not need them in her suitcase. Ahhhh, thank God. 

Unfortunately, the damage was done and I was absolutely worn out. And it was only 5am. 😑We had such a long day ahead of us! And I still had to get through the actual flight!!! 

After we landed, we got an Uber to the patient housing building (the Bon).

We had them store our luggage for us since check in wasn't until 2pm. Then we walked to breakfast. I had a cup of coffee on the way to the airport, a cup of coffee on the flight and two cups of coffee at breakfast! That is WAY more than I usually drink. But at breakfast, I wanted to just lay down on the floor and close my eyes. We headed back to the Bon and Tom called to see if we could check in early - and hallelujah they said our room would be ready at 10:30am! Thank God for small miracles! So, we walked to Target across the street and got some essentials while we waited. Then we went and checked in. Oh my God, I couldn't wait to lay down and close my eyes. I am not a napper, but I had no trouble falling asleep, which clearly my body needed (despite all that coffee)!

Our first appointment was at 12:30. It was a pacemaker check. One of the things they tell me during these checks is the expected battery life of her pacemaker. When she told me, I thought, huh, that sounds pretty low compared to last time. So I went and looked back at her records and wrote down what her expected battery life was at appointments. 

I guess when her battery life is showing one year or so, we start talking about replacement. At this pace, it will be here in no time! Ugh. I don't want to think about that surgery. 

At 1:30, we had the regular pre-op appointment with a nurse, and an anesthesiologist. Other than answering the same questions several times, it was fine. I will say that I felt like they treated us like they knew we weren't new here, which was great! 

After that, Harlie said she wanted to do something fun. I asked her if she thought going back to the room and relaxing was fun - but she said no. Darn it. Haha! So, we took an Uber to the Museum of Illusions. It was pretty cool! 

By the time we were done with that it was 4pm, so we went to the Black Rose to get an early dinner. We had not eaten since breakfast, so we were starving. Since the weather was so nice (beautiful and sunny) we decided to walk back to the Bon (a two mile or so walk). 

It was such a long day - so we were done and in bed before 9pm. Harlie was first case - so we had to be back at the hospital at 6am for a 7:30am start time. 

Since we are staying in patient housing (vs a hotel) we have access to the hospital shuttle. We normally like to walk - but if we took the shuttle it bought us a later wake up time, so we took the shuttle. 

All went well. They started an IV in pre-op and gave her some meds before taking her back. Dr. Resnick was done around 12:30pm, I think. He said all went great. A couple of things that were different this time:

Even though the left side only had a space holder in place since he removed the TMJ last May, the right side did not become dislocated. Years ago, when the right TMJ had to be removed (due to infection), the unevenness caused the left side to become dislocated. In order to fix the left side, he had to cut her open and we believe this is how the left became infected. Since the right side was not dislocated - he did not have to touch the right side. YAY! 

The other good thing is that he did not have to go into her mouth to do anything. I guess in the past, he had to do some work in her mouth. However, this time, for the first time - he did not need to do that. So, he believes this greatly reduces the risk of infection. Woohoo! 

With any luck - we will be DONE doing jaw surgeries. 

So, now she is settled in her room in the cardiac intensive care unit (CICU). Her blood pressures have been low, so they have given her two boluses of fluid hoping to get that up some. Right now it is 104/45, which is better than it was. I don't remember what the first number was earlier, but the second number was in the 30s, consistently. So, it is improving. They have pain meds and anti-nausea meds on board, she has an arterial line and all seems okay.

It is now 4:30pm, so I'm going to wrap this up for today. Hopefully, the next few days and nights will be smooth and uneventful. 

Thank you for reading - thank you for the love!

Christy xo

Spring 2026 Update

Hi. Just going to jump in here and try not to think too much about it. 

In my last post I listed some upcoming appointments. 

Here are some updates:

Electrophysiologist (Pacemaker) - She's seen him twice since my last post. There is a device near her bed that sends her pacemaker transmissions to Children's National every few months. They review it and let me know that all is okay (usually). In February, I learned that her heart had two events. One she's had before and is on meds for already (NSVT). The other one is new to her (atrial flutter, which lasted about three hours). So, he increased her meds and said we just need to watch her. He asked if she was sick during the time period of her events - and she was! He said we just have to really watch her when she gets sick because it really stresses out her heart. Awesome. 

Hepatologist (liver doctor) - they ordered a CT scan with contrast to try to get a better look at her liver. Normally, they would do an MRI, but they can't with her pacemaker. Basically, they were looking for potential cancer, since she is at an increased risk with the extra pressure/work on her liver due to her heart/lungs. So far, so good. 

She had her wisdom teeth extracted and I am shocked that all went well. No issues. 

Opthalmologist - all stable there. Also, sadly, I have given up on the whole occuloplastic surgery that I was trying to coordinate this time last year. That was a mountain I just couldn't move. Turns out they wouldn't consider trying to do both surgeries in the same week even, which would mean another trip to Boston JUST for her eye. I just can't even think about it anymore. 

Bronchoscopy - she had a bronch in February and it was really just a check up. I don't think she's had a bronch since the whole airway reconstruction in 2018. But, my memory is a little fuzzy. Anyway, her local ENT said it has been a long time and we should just check it out. I almost canceled it. It is hard to work in "well checks" when we are already doing so many appointments. But, for some odd reason, I didn't. Anyway, can you believe that she had so many granulomas blocking her airway!?!?! Wow! I really don't know how she was handling her speaking valve at all. Her ENT showed me pictures and it was crazy. Thank God she suggested the bronch! Harlie is definitely tolerating her speaking valve so much better and I really feel like her voice is so much better! She will have a follow up bronch at the end of May. Unless I reschedule it - because I'm writing this post on May 5th while she is in the OR...

In other news:

My Mom went on Hospice in August. We moved her into a house that has a caregiver that lives there. Mom had her own bedroom. At first it was hard on her (it was hard on all of us, really). But, she finally got to know the people there and they were good to her. She had dementia. My Mom deserves her own post, but I just don't have it in me to write about her yet. She declined through the winter. By February, on my way to visit her I was always afraid she wouldn't remember who I was. The last time I visited her when she could speak, she told me that I looked just like her daughter. She also said I was pretty. It was so hard to drive to see her. It was harder to leave. She passed away on March 1, 2026. 

Even though we knew it was coming, I was so surprised at how hard it was. I thought since I know a thing or two about grief, I would handle it better. Not better - maybe I thought I would be less sad. But, it doesn't work that way. Honestly, I'm still sad. Which is probably why I don't want to write about her yet. 

On March 21, Harlie went to the All-Star Prom (prom for exceptional education students in the county). I didn't commit to her going in time to secure transportation - so I dropped her off and picked her up. Tom was out of town that weekend. No matter what, it is always hard to drop her off somewhere. Is she polite to other kids? Do other kids talk to her? Does she talk to other kids? Will she have fun? Will something embarrassing happen to her? She said she had fun.

April 9th - We announced that we were closing down operations for We Heart Harlie & Friends. This was such an incredibly difficult decision. This is also a subject that I feel deserves it's own post. This also makes me very sad and I'm just not ready to write about it, either. 

April 11 - Since she went to the All-Start Prom, I was kinda hoping she wouldn't want to go to her school prom. But, she did. Since she had just worn that other dress (that she's worn before), I ordered a bunch of dresses and hoped one would fit. Thankfully, one did. Well, it was too long, but I was able to just cut off some material at the bottom to make it work. A seamstress, I am not. 

The prom was at a hotel. Cooper and his girlfriend and friends went out to eat before. So Tom and I drove her to the hotel and dropped her off. Dropping her off at a hotel was way harder than dropping her off at the high school for the All-Star Prom. But, her teacher sent me photos and videos of her dancing and that made me feel better. Cooper drove her home and they all had fun, I'm told. I don't know what I'm going to do when Cooper graduates and Harlie won't have him around anymore. I try not to think about it, because it makes me sad and scared. But sometimes I can't help it. 

Cooper picked out his suit and purchased it himself. I don't have a picture of him and his girlfriend, but he selected this suit because it matched her dress. 

April 23 - Murphy and a friend of his drove to Pittsburgh for one night to attend the first night of the NFL draft. Those crazy kids. It is so funny to remember that just a few years ago, Murphy didn't know or care anything about football. Today he is a Steelers super fan and a football expert. Haha! Thank you to our dear friends Mike and Laura for putting them up for the night!

Murphy came back the next day (Friday) so he could attend Cooper's school play - Shakespeare's Twelfth Night. Cooper played Sebastian. He was so great, as was all of the students! It is truly amazing what these kids can do. We have already been super impressed with their ability to memorize and perform all their lines - but Shakespeare? That's on another level. Anyway, it was great - we all loved it. I went two nights. I just love getting to watch Cooper on stage. 

Cooper is in the center, to the right of the girl in the blue dress.

Cooper and his girlfriend (Riley). She was Antonio in the play. 

Mary Ann (aka Grandma) came down for the weekend so she could see his play. 

April 26 - We went to see the Richmond Flying Squirrels for Tom's birthday celebration (his birthday was on April 28th).

Our friend Dave made this happen. It is hilarious because Tom turned 53. Haha!

May 1 - We went to Banana Ball. It was crazy. It was our first time experiencing the chaos that is Banana Ball. 

It was the Firefighters vs. the Clowns. There were "characters" all over the place. 

I would say that it is more like a show with a side of some baseball-like game. It was fun and different.

What's ahead:

May 11 - Murphy's 22nd birthday. I really hope to be home from Boston before his birthday. 

May 12 - Murphy graduates from Reynolds Community College. Now I REALLY hope we are home for his graduation. We are so incredibly proud of him. He worked full-time while going to school and paid for all of his classes along the way, all on his own. 

May 15 - Murphy is moving out and moving in with a friend of his. Thankfully, he won't be too far away (20-25 minutes or so). I am unable to write about this right now as well. Yes, I am so proud of him. Yes, I am so happy for him and excited for him. Yes, I know he is ready. Yes, I know this is the way it is supposed to go. Trust me - this is not the way it will go with Harlie - so I know to be so grateful for the life experiences that are good, normal, and all that jazz. But, I am going to miss him being in our home and sharing our address more than I can say. This year has already been pretty hard as far as changes go (there have been many) and I am just going to need to feel what I feel. 

This year should be the year that Harlie graduates from high school. But, it isn't. This definitely needs it's own post. There are so many feelings that go along with this. Just know that I'm feeling pretty raw right about now. Some days I find myself so angry - at everything. Then I realize that what I'm feeling is just pain. Pain all over. Every interaction I have just causes me pain. Even when I'm happy for someone else, it just reminds of me of what we've lost. 

Anyway, that's it for now. I'll start working on the hospital posts. 

As always, thank you for reading, thank you for caring, thank you for the love!

Christy xo

Fall 2025 Update.

I don't know how to begin a post after this long. Trust me, I've tried. I've tried so many times to write. I get started, might get a few paragraphs in, then I find myself overwhelmed. Or I just don't want to think about what I'm writing about anymore. Then I go and play some stupid game on my phone so I don't have to think at all. I even "finished" a post in the summer. But I still haven't published it. Despite all the good feedback I've received over the many years I've been blogging about our life (started 19 years ago!) I've been struggling with sharing my life lately. If you've ever commented "thank you for sharing" I thank you. It is so hard to share your inner thoughts, your feelings, your fears, etc. with close friends and family - much less to anyone on the internet who is willing to read them! It takes a certain strength, an energy, something - to share. It makes you vulnerable and you need those things to get you through that vulnerability. I guess lately, I haven't really had that something to do it. I still don't. But, I'm going to do it anyway.  

I'll start with a picture of the first day of school for Harlie (12th grade) and Cooper (11th grade). 

Okay, here is what I started weeks ago:

I haven't updated you in so long. I have tried to write - several times. But, I feel like my post gets so overwhelming. I do not know how to update you on our life in a short, concise way. 

So, how is Harlie doing? 

Overall, she's doing well. I feel like this school year got off with a rough start. Harlie was offered to attend a program where she would go to a different high school for the first half of every other day and learn about job stuff. 

Wait, I have to back up first. For years Harlie has been telling anyone who would listen that she wanted to take a science class. So, last year in her IEP meeting, we discussed this and everyone agreed that science was clearly important to Harlie. So, they thought Oceanography would be a good start. So, that class was added to her schedule. 

Unfortunately, Oceanography and this work program were scheduled on the same day. Schedules came out the week before school started, I think. So, on Harlie's second day of school, she was put on a bus all by herself and sent to a different high school where she didn't know anyone, had this work program, had lunch, then she rode the bus alone, back to her school. After arriving, she went to Oceanography for the last 15 minutes or so of the class. 

Also, she didn't have PE class. Instead, she had a photography class. To be honest, her last IEP meeting was sometime last year and I cannot remember the details. Did I decide she would take photography instead of PE? Or did someone else? Was there a mistake? Miscommunication? I have no idea. 

Regardless, Harlie wanted science and PE and she essentially got neither. She was miserable. Like so upset and it broke my heart. 

Normally, I would ask her to give this work program more than just one day's chance. But, that wasn't fair. She did not ask for the work program, she asked for science. And honestly, I really don't see how she will ever work, physically speaking. Her working is not an expectation nor is it a goal (at least for now) as far as I'm concerned. 

So, I pulled her out of the work program and added PE. Because of scheduling conflicts, we had to take her out of Photography I and put her in Photography II instead. I hate to have her skip anything (because she needs more time versus less) but I was told the teacher said it would be fine and really, I had no choice. 

Now she gets her full Oceanography class. I know I made the right decision because after school on the first day she took the full class, she showed me her Oceanography notebook where she had taken notes of all the rules of the class and then listed bodies of water. Just writing all that was so much work for her! 

Then, she got out her tablet and started googling all of the bodies of water on the map so she could see and learn where they all are. Then she told me they had a quiz the following week. I honestly think that's the first time she's ever told me she had a quiz or a test and it made me tear up. Talk about appreciating the small stuff. She wants to learn so badly. It kills me how hard she has to work for everything. 

I just hope that her Oceanography teacher can see and appreciate that about her. I know you're probably thinking, how could he/she not? But, sadly, not everyone sees value in a person with disabilities. Sometimes I feel like some people don't see Harlie at all. Well, I think it is more like they don't want to look at her. Like they know she's there, but they pretend they don't see her, so they don't have to acknowledge her. I've been out with her (like to the aquarium in NC this summer) and I saw both adults and children walk in front of her, cut her off in the hallway, get in front of her at a tank, etc., like she wasn't even there. Not one person said "excuse me" or "I'm sorry" they just kept on trucking like we were invisible. It sounds ugly, but it is the truth. It was a terrible experience. The kids, I sorta get. But, the parents? No excuse. 

We have her schedule straight now, which is good. But, the school situation is still a little frustrating. This is Harlie's 4th year at this school and she has had a different case manager each year. Other individuals have changed in the department as well, and these inconsistencies make navigating school extra difficult for me. For most students, they are learning to handle so much communication on their own. Cooper handles his own stuff and tells me what I need to know. I don't have to communicate with his teachers at all. However, it is not like that with Harlie. I have to handle so much stuff for her. I wish her school could keep a case manager longer than one year. It makes me feel like the Exceptional Education department isn't valued at her school. 

An exceptional education student can stay in school until they are 22 years old. I think it is typical for a student to walk at graduation with their class. However, I don't feel like Harlie really has a class per se. We put her in KG at age four, on purpose, so she would take it twice, which she did. Then we had her repeat 2nd grade because she had been out so much for medical reasons. For third grade, she was moved to a different elementary school. Then her medical stuff got so bad that we took her out of school completely and she went on homebound (she didn't attend one day of 4th grade). Then Covid happened and I couldn't send her to school because their Covid rules were to protect all the other students FROM Harlie's trach, which put her in harm's way, so she went back on homebound. Anyway, while the last four years have probably been the most consistent she's ever attended school, she doesn't really have any "friends" in the traditional sense. 

Right now, Harlie thinks she is going to graduate high school and then go to college, like so many other students. But, that isn't going to happen. So, I think it would be detrimental to her to have her walk/graduate, just to have her return to school the following fall. Selfishly, I know it would be detrimental to me (Tom, too). Knowing what I know about Harlie and her hopes and dreams, I want to put off the reality of what her future will be as long as I can. It was my understanding that we could choose when she walks. I only speak for myself here - I'm sure this process of walking with your class and returning to school as a "super senior" works for many and that is great. I am not trashing that process at all. I'm just saying that in our situation, that path sounds more painful to me. When she graduates, I want her to be done with that chapter. Just like Murphy was and just like Cooper will be. Although, this also means that Cooper will graduate before her. I know it was hard for her when Cooper got his driver's license. She knows she is older and she said that it is her turn to learn how to drive. But, that just isn't possible. I haven't been able to share yet - but she had that psychological evaluation done back in May (for her guardianship process). As a result of the evaluation, she was officially diagnosed as having an intellectual disability. I'm not going to get into that right now. I will definitely stop writing and go play some dumb game on my phone if I attempt that. Haha! So, based on that evaluation and diagnosis - she cannot drive. 

We have talked to her about this graduation thing and I don't really know how much she truly understands. Unfortunately, she was in the hospital when Murphy graduated - so I don't even know if she knows what that even looks like. So, maybe we will change our minds, but for now, we are waiting for her to walk. 

Her next surgery is October 14th - back in Boston. 

The above is what I wrote some time ago. I guess I didn't want to think about her next surgery in Boston. Haha! 

Since then, I met Harlie's Oceanography teacher during parent/teacher conferences. He told me that Harlie "works from bell to bell". That is awesome. I love it. She is such a hard worker. So, I think he sees her and that makes me feel better. Here are a few more pics of her notes. Maybe it is weird to share them, but I think they are so darn cute! 

Also, there was a new development with her surgery in Boston. Back in the summer, Harlie's dentist took an x-ray to look at her wisdom teeth.

The area circled in pink is the prosthetic TMJ on her right side. The wisdom tooth on her lower left side has a red dot on it. As you can see, the tooth has a hooked shape to it. Seems gnarly to me. The white thing with the blue dot on it is the temporary spacer to hold the place for the upcoming prosthetic TMJ.  As you can see, the hooked wisdom tooth is super close to where the TMJ needs to go. 

Since the wisdom tooth is on the same side that the TMJ is being replaced, her dentist was thinking while the surgeon was in there, perhaps he should remove it at the same time. So, I sent the x-ray to her surgeon in Boston. 

Ugh. 

He said that the lower wisdom tooth on her left side looked bad. When he replaces her TMJ, he will do that from the outside of her face. To remove the wisdom tooth, he has to go inside her mouth. The tooth is so close to her joint that the risk of bacteria traveling from the tooth area to the joint is way too great. Given her sensitivity to infection (she has been on an antibiotic for over four straight years for joint infections and this will be her second TMJ replacement due to infection) that the best thing to do is to remove the wisdom tooth several months BEFORE he replaces her left TMJ. He said even if we wait a year or more to remove the wisdom tooth, the bacteria could still penetrate the prosthetic TMJ. 

My first thought was that some people go their whole lives without having to have their wisdom teeth removed. I mean, Murphy still has his and he is 21. I am not looking for more surgeries here. Plus, we had already bought our plane tickets, made logistical arrangements and mentally prepared for this surgery. Also, and probably my biggest concern, is that the last time we went through this....ugh this is so hard to explain. Let me do it this way:

April 2023: her right TMJ was removed and he put a temporary spacer in to hold the place. 

October 2023: he put in the new right TMJ. But, during the time in between surgeries, the TMJ on the left side became dislocated. He had to open up the left side to fix it. This lead to the left TMJ becoming infected. Which has lead to the left side needing to be replaced. 

Another thing to note - it takes some time to know if there is an infection. She came off her antibiotic in December of 2023 and in January 2024 she started showing signs of an infection on the left side. So, she had to go back on the antibiotic. Thankfully, she has been tolerating this antibiotic (Doxycycline). We just kept her on Doxy until the infection broke through and reappeared in December 2024. Once the infection breaks through while on the Doxy, we have to remove the TMJ. 

So, this wisdom tooth creates MORE time in between the removal of the left TMJ and the replacement of it. So, will the right side become dislocated? And if so, will he then have to open up the right side? And if so, will the right side become infected?!? Do you see what I mean? Adding time in between the surgeries makes me super nervous.

So, I replied with "Can we just forget we ever had this conversation?" I asked if it was possible for her to just keep them forever - I mean, not everyone gets them removed. He told me it looked like the tooth was not in great shape - which meant it was risky to leave it. I took her to her dentist to so he could take a closer look. He said that it appears that her wisdom tooth has been fractured (during some past surgery). So, her surgeon said it must come out. At first, I just didn't want to think about changing our logistics. So, I asked her surgeon if he could remove the tooth on our already scheduled OR date and he said of course. 

But, as I thought about it over the next week or so - the thought of doing what is likely some version of outpatient surgery - in Boston - sounded really terrible. I mean, who the hell wants to have a bear of a wisdom tooth removed and then go back to a hotel or worse, get on a plane - or in a car for a 12+ hour car trip home? So much of what happens to Harlie is out of my control - but this I just couldn't do to her. Or to us, frankly. It is very hard to be a caregiver post-op when you're traveling. Plus, it didn't take me long to start fearing - what if something happens and we are in the air - or hundreds of miles away on some highway? I mean, to everyone else - this is just a wisdom tooth removal. But, just when you think something will be simple - that's when things go wrong. 

So, I reached out to a local oral maxillofacial surgeon at VCU that we know and love. He has helped us out in the past when Harlie was post-op from Boston. He said he could remove it for us here, locally. So, that's what I decided to do. It makes so much more sense to stay here for this. He got us in his clinic within a week. He said that it isn't going to be easy, but he will get it done. Haha! Her mouth opening is so small, I don't know how they have any room to do anything. Plus, this isn't a straight tooth, so that's got to make it more difficult. She also has a wisdom tooth on her upper left side. We have to decide if we want him to remove that one as well. I just don't know that I want to do both at the same time. I know that is normal for most people - but well, Harlie isn't like most people. So, I think I'm going to leave it be for now. I don't want to add more risk if not absolutely necessary. At this point, her wisdom tooth removal is scheduled for November 25th at VCU and her TMJ replacement surgery is May 5th in Boston. 

Back to what I was saying earlier about the time in between surgeries - her left TMJ was removed May 13, 2025. The new TMJ will be placed May 5, 2026! A whole year! I know there is absolutely nothing I can do about it. But, I have to tell you, it takes so much work on my part to try and stop worrying about all that could go wrong. So, that's what I'll be doing for next eight to ten months. 

Who am I kidding? Honestly, I think the last 19 years have broken me. I'm now a catastrophic thinker. So, I don't think I'll be worrying for ONLY the next eight to ten months. I'm working on it. But, I think it goes with the territory if you have a medically fragile child that has experienced a lot of close calls (medical trauma). Not only have we experienced them - my vigilance and hyper awareness is what could save her life in the future, too. So, I can't just stop worrying. This has become more of an issue lately and has started to impact other areas of my life. Maybe it has for longer than I've been willing to admit to myself. I might have the courage to share more about that in the future, but not today. 

Since we rescheduled her TMJ surgery and it is some distance away - I reached back out about trying to get the oculoplastic surgeon scheduled on the same day. No can do. Ugh. Can you believe that? This is so frustrating. Every time I look at another option, it means a whole new ophthalmology consult. She's had three in the past year! Trying to get her eye situation better has really been a ton of work and it is hard to think that I have to keep working on it! 

Despite being as healthy as Harlie can be, she has the following upcoming appointments:

Electrophysiologist (pacemaker check): November 6

Hepatologist (liver doctor): November 19

Wisdom tooth extraction: November 25

Ophthalmologist: January 2 

Dentist: January 5

G-Tube follow up: January 6

ENT, Bronchoscopy: January 9

Damn, that first week of January is going to be rough. Honestly, I might have to reschedule one of those. 

Well, that's it for now.  I'm spent. As always thank you for reading and for caring. 

Much love,

Christy xo

Left TMJ Surgery in Boston

Hi! Well, Harlie had her TMJ removal surgery today (Tuesday). To be honest, I'm struggling to get this post started. I'm just feeling so tired of it all. 

Preop Day (Monday)

We flew up on the first flight on Monday. We had to leave the house at 4am. I, of course, woke up at 2:15am thinking of all the stuff I had to do that I didn't want to do. Like go to the airport and fly to Boston. Anyway, the flight was fine. 

We arrived in Boston and took an Uber to our hotel (which isn't really a hotel). It is awesome because they are apartments that are rented for patients of Boston Children's Hospital. It is kinda like a Ronald McDonald house (which they do not have here). They opened after our last stay here, so it is new to us. It is way more affordable than a hotel or AirBnB. So, we went there first to drop off our luggage. Then we ubered to a breakfast place close to our first appointment. After many hurdles, her appointment with the oculoplastic surgeon was approved and coordinated with her other preop appointments. That was a logisitical nightmare. But, luckily, everyone wanted to help us make it work and they got it done. Whew! I'm so thankful for that! Anyway, we had to see this doctor at their Weymouth location (about a 40 minute drive) because that's where she was that day. 

We added this appointment because she saw her ophthalmologist back in November and she felt that her corneal scarring was getting worse. Her scarring probably happened back in 2018 when she was in a medically induced coma for 20+ days. She cannot fully close her left eye, so dust can get in there and while she was out - they were trying to tape her eyes shut. So, if there was something in her eye, it couldn't even come out because of the tape. Anyway, it also is probably dry most of the time, since even blinking doesn't shut her eye all the way. So, her doc just thought maybe it is time to see a surgeon to see if there was anything they could do surgically to help her close her eye more. It seems like so many oculoplastic surgeons work at surgical centers. They aren't going to put Harlie under anesthesia at a surgical center. So, I just thought that since we have to go to Boston twice anyway (phase 1 in May, phase 2 in October) if we had a consultation in May, and they determined that they could help her - maybe we could coordinate eye surgery with phase 2 in October. So, that is why this consultation had to happen or the whole possibility would be lost. 

As far as how that appointment went, the doctor took a bunch of pictures and did a bunch of eye tests and she said she wants to do some research and talk to her colleagues before giving us an answer. I told her that if she felt like they could not improve her situation, that is fine. I am not pushing for this thing unless it truly could help her. So, we'll see what she says.

After that appointment, we ubered back to Boston Children's hospital, main location. At this point it was 1:10pm and we had about 7 minutes to eat lunch. So we grabbed a salad in the hospital cafeteria, ate it really fast and then went up for her preop appointments. 

We covered her history, meds, etc. and they sent in anesthesia. When she came in she said she had some bad news. She said that legal had an issue since she is 18. I guess they concluded that she is not a typical 18 year old so they had an issue with us helping her? I don't really undertsand it. I mean I've gone with Murphy to appointments when he was over 18 and no one said a thing. I took Harlie to her pacemaker appointment two weeks ago and the lady checking us in had to ask someone else if they could still see her. I mean, just ask her if she wants me in there with her. 

Anyway, they basically said that surgery might have to be cancelled. I mean, she has an active infection in her jaw - so this possibility was terrifying to us. Not to mention the cost and time we had invested. Anyway, after they left to go and get social work and talk amongst the legal team - it occurred to me that we did her power of attorney and medical directive a few months ago at the firm where I work part-time. I completely forgot about that! Anyway, I called my sister and asked her to look in my computer at work to see if I scanned in the signed copies. Which, I did not. Darn it. So, then we called my neighbor to see if she was working from home, which she was, thank God. So, she dropped everything and went to our house and she found the documents in our office. Then she scanned them to us. Hallelujah! Thank you, Lindsay! Tom emailed them to the nurse and we waited. 

It is during situations like this where my brain goes crazy (PTSD?) and it is awful. Not to mention that I feel like I am being lit on fire when it appears that some stranger is standing in the way of Harlie getting the medical care she needs. OMG. So, I started to think of every horrible thing that could happen. Like, for example, YEARS ago while we were in the hospital here, there was a case happening where Boston Children's Hospital took parental rights away from the parents of a patient. They brought her here from out of state for a chronic issue because they couldn't figure out what was happening. I guess they feared that the parents were part of the problem. I have no idea how that ended. Anyway, that entered my mind, as if that was a possiblity! I was afraid that they wouldn't honor the document. I don't even know if that is possible. But, I was truly terrified they would question it and say it didn't matter. 

We are working on her guardianship, but trust me when I say this has not been easy. In fact, we just got her psychological evaluation report that very day! I think that is the last piece of information we need to file it legally. 

Anyway, I was trying to stay calm and tell myself that it will be okay if they cancel it. I said to myself, I didn't want to do this to her anyway, so we will just leave and go home and hope that her infection doesn't hurt her before we can get this guardianship and come back. Or maybe even go somewhere else. I'm telling you - I looked totally calm, but inside I was spinning out of control!

Then the social worker came in and said legal said her medical directive was what they needed and all is a go. I literally had to hold back the tears. I was so relieved.  The documents are now saved in my phone, which is where they should have been. Ugh. My brain just doesn't work like it used to. I'm just getting too old and tired for this kind of stress. We are 18+ years into fighting for her life and I am running on empty. 

After that she had to give some blood for labs, the anesthesiologist came back and we did our thing (more history, questions, meds, etc.) and then we were DONE. 

We left the hospital close to 5pm, I think. Been up since 2:15am. So, we walked the mile or so towards our apartment and stopped at REI (Harlie calls it the camping store) to let her look around. Then Tom and I got a drink and we sat outside for some fresh air and relaxation. 

Tom ordered me the Murphy's Law, which was an Irish Whiskey with cucumber and mint. Since Murphy turned 21 on the 11th (the day before) that seemed like a good choice. 🙂

We went to Target (which is right across the street from our apartment) and got some essentials (coffee), went and got dinner from a greek place and then ate in the apartment. It is a cute, tiny one bedroom apartment. Perfectly fine for our needs and priced great at $75 per night. 

We were all so exhausted and we had to get up at 4:30am! We had to have her at the hospital at 6am and we had to walk there.

Surgery Day (Tuesday)

They took us back to preop quickly. They had told us that they wanted to start an IV in preop. Harlie hates that. So, we talked about it beforehand so she wouldn't be blindsided. She likes to be informed in advance of all things. Haha! I told her I would only let them try once or twice. If they couldn't get it in one or two sticks - they would have to stop, so she agreed to that. They didn't get it in one stick and the nurse said she wouldn't even try a second time. Harlie was glad about that. 

I am so used to answering all the questions for Harlie. But I made an effort to ask her if she wanted to answer or if she wanted me to answer. She wanted me to answer all the medical stuff. She answered all the personal stuff.

All the docs came in to ask all their questions and ask us if we had any questions. We never have any questions. It always cracks me up when the anesthesiologist asks me if I have any questions. Like what would I possibly ask her? You know what you're doing? Great. Go do it well. 

They took her back around 7:30am. We went and got some breakfast and then headed to the waiting room to wait. This is what I posted on Facebook:

Tom made this little image of me and added it in the comments.

It so perfectly depicts how I'm feeling right now! Haha! Love it. I feel seen! Haha!

Anyway, while we waited, Tom put the movie Nonnas on his tablet for us to watch. It has Vince Vaughn in it, it is on Netflix. The movie starts with a funeral. 😑 

Folks, I'm hanging on by a thread over here. So, the slightest thing that could be interpreted as sad, and there was no chance I could hold the tears back. I basically sat there and cried for the first 15 minutes. In fact, I told Tom to just turn it off. But, he said, "I think it gets better." Haha! He went and got me some tissues, actually it was a bunch of toilet paper because he said he couldn't find any tissues. What the actual heck? A children's hospital (affliated with Harvard medical, which has to have plenty of money) waiting room with not one freaking box of cheap ass tissues? Unbelievable. So, I sat there with my wad of toilet paper crying over some stupid movie that wasn't even sad!! I'm telling you, my life is way harder than I make it look. 

Luckily, I was done crying by the time her surgeon came to talk to us. He said there were no surprises and all went as planned. He said the infection was there, but wasn't horrible. Either way, we had no choice but to do this - we were never going to beat that infection. He asked us for permission to test Harlie's blood. One of the plastic surgery fellows poked himself with a needle during her surgery. I asked him if they made fun of him and he said yes. Haha.

They admitted her to the CICU and when they got her all settled, we were able to go see her. One example of why hospitalizations are so exhausting is the repetition of information - we asked her surgeon what after care she should have. He said ice is the best thing we can do to help reduce the swelling. I asked him if he put that in the orders so the nurses in the CICU would know to do it, since the CICU doesn't normally get plastic surgery patients. He said yes, they are in there. So, we get to her room and there's no ice. So, I ask the nurse about the ice and she said there were no notes about ice. I don't know why that happens - but it does. You always have to be on top of everything. You can't assume anyone knows anything. It really gets exhausting. Anyway, she got her ice and a sleeve thing. She slept pretty good and her nurse said she only had her so she would be right with her - so we should go eat lunch. 

We left the hospital and walked to a restaurant a few blocks away. It was a beautiful day.  Harlie woke up when we got back. Oh, forgot to mention that her surgeon also re-pierced her left ear while he was in there. I don't know if you'll remember that when we went to see Taylor Swift a couple of years ago, Harlie's left ear lobe split. So weird. During her surgery to replace the right TMJ back in 2023, he repaired that ear lobe. So, since he was in there, Harlie wanted him to pierce it again. 

We stayed in her room until her night nurse came on. She said she only had Harlie for the night and would be right with her. Harlie was pretty tired and slept most of the time. So, we left and headed to the hotel. After putting our stuff down, we went up to the top floor of the building to check out the view. There's a little patio up there for the residents, which is pretty cool. That's Fenway behind us. 

Then we walked to a restaurant just a few doors down for dinner. Tom's mom got us an e-card for dinner there, so that was really nice. Thanks, Mary Ann!

Post-Op Day 1

Harlie's nurse said she slept all night, which is good. When we got to her room, we got her all cleaned up - I brushed her hair and braided it, changed her trach ties, got her ear all cleaned up (her incision had drained all over her freshly pierced ear) put her in fresh pjs and changed her bedding. 

She was a little upset and frustrated at her life and cried a little. Ugh, she breaks my heart. She told me that she gave her phone number to a girl in her class. I was very surprised. She checked her phone to see if her friend had messaged her and she had not. I have no idea of what her friend is capable of doing or if she even knows that Harlie had surgery. I can't imagine having a surgery like this and not hearing from my friends. It just breaks my heart that Harlie doesn't have that kind of friendship. She must feel so lonely sometimes. 

Her nurse said that if she could get a CT scan today, they would discharge her if we were ready for that. We felt like she was doing really well. Then her nurse said that CT called and said they were ready for her. Wow. So, Tom looked at flights and the next flight out is for 9pm tonight. They rounded on her right after she returned from the CT scan and told Tom to book our flights. I loved the attending doc. They ordered her meds and gave me everything I would need for the trip home. This is definitely the shortest post-op stay she's ever had. We loaded up and left. For the first time ever (been coming here since 2012, I think) we used the free shuttle from the hospital to our apartment/room. I just didn't want her to have to sit in her chair and be bounced around. Seemed like that would be painful.  

We are now in our apartment/room and Harlie is napping and we are pretty much packed and ready to go. 

Hopefully, all will go well with the airport and flight and we'll be sleeping in our beds by midnight. Thank you for reading and commenting and loving us. 

Much love,

Christy xo