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

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

TMJ Update

Hi. There have been some developments with Harlie's TMJs since I last blogged. 

Here's a recap:

April 2021 - She had her first prosthetic TMJs placed on both the left and the right.

May 2021 - a growth appeared at her incision sites, I took her to several doctors to try and find out what it was. Just yesterday I found a clinical note from one of the docs we visited during this time period. Her note said that mom was overwhelmed and teary at times. Yes, it was a VERY hard time because people were still nutzo about Covid and getting Harlie in front of people with a serious issue was such an unnecessary battle. 

August 2021 - I finally got her into the OR with her ENT in DC. He said it was an abscess/infection. They gave her a PICC line and a two-week course of IV antibiotics.

September 2021 - the abscess returned, so infectious disease put her on Doxycycline. Over the next year, we attempted to take her off Doxy several times, each time the infection returned, so she went back on Doxy. 

November 2022 - the infection returned on the right side only, despite being on Doxy. After consultation with several of her doctors, the decision was made to return to Boston to remove the TMJ.

April 2023 - the right TMJ was removed since that is the side where the infection re-appeared. The surgeon said the right side had a track and we never would've beat it with antibiotics. He put a spacer in it's place. 

October 2023 - a new right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated.   

December 2023 - We were finally able to stop the Doxy! Yay! This was great, because by November, it became difficult to get her Doxy at all. For some reason, there was a low supply, and I would have to go to several different locations to get what she needed. Unfortunately, I've noticed that there's been a major problem with getting any kind of customer service when it comes to medication. I get that the pharmacists are over worked and under paid, under appreciated, etc. But, at the end of the day, my kid needs this medication. I know that they don't know why she's getting this medication (I think a lot of teens take Doxy for acne) - but they really do not care if she goes days or weeks without what she needs. I'm the one who has to figure it out, feeling like I have no help. This became a huge stressor and just remembering it now as I write this makes me so mad. I mean, I am at our local pharmacy so often and I see the same people (for the most part) over and over and there is never any type of recognition that they've ever seen me before. Or that we just had the exact same conversation about trying to get Doxy two weeks ago. I just don't understand. 

So, when we were finally able to STOP giving her Doxy, we were THRILLED. It was a little scary at first. But, her surgeon said he felt really good about how the surgery went and he didn't have to go into her mouth this time, so the whole site was cleaner, in general. 

I'm guessing that you might know where this is going...

On the 20th of January, I was getting Harlie ready to go to Caylee's baby shower. I looked at her incisions (which is now just something I do on a regular basis) and noticed a bubble/blister looking thing on her left side. I really can't describe how I felt when I saw it. Honestly, I think I just couldn't deal with it. I told myself there was NO way this was happening again. It was just some other weird thing. 

But it isn't. I know it. It looks exactly like the very first growth that appeared that summer in 2021. I just can't believe it. I mean, how can this be? ARE YOU FUCKING KIDDING ME?! Can this girl catch a break, please? OMG! I just don't know how much more we can ask of Harlie and her skin, which has been cut so, so many times. Too many times! Under her jaw is all scar tissue at this point. 

I am feeling so overwhelmed right now. I just don't know how we are going to do this again. I don't. It is too much. I'm telling you - it is TOO much. I just can't even think about them having to replace her TMJ, AGAIN. I do not ever want to return to Boston Children's Hospital. No offense to BCH, but I am so done going up there. If I had known at the beginning that we would STILL be going up there 12 years later, I don't think I would have ever started. 

I just want to say that going out in public (or a baby shower to celebrate someone I love) while I'm trying to process heavy shit is so fucking hard - and it is getting harder. It is like I have a bucket of water and everything is fine until it fills up too much, and then it starts to spill over, unpredictably. I want to emphasize that word, because I go out with full intention of being able to keep my damn water in the freaking bucket! So, instead of being like, yes, the food is so good, your hair is looking fabulous, I love your sweater, etc. I'm like Harlie's infection is back, I shouldn't have brought her, she can't hear a thing in this loud room and no one can hear her so she's just sitting there and she can't play these shower games and my heart is breaking into a million pieces.  Like, I'm carrying it and it is fine until I bump something then I spill water everywhere and then, I'm like, oh shit, sorry I got my water all over you at this baby shower. Then, after I get home I think about it and I feel terrible that I spilled the water and I beat myself up that I wasn't stronger to keep my water it in the bucket. 😑 Luckily, I was with great people and I know they are okay with me spilling my water on them. But, I still feel terrible about it all. I want to keep my water in the bucket. This is one thing I'm working on with my therapist - being kinder to myself. I am totally fine if my loved ones accidentally spill their water. I shouldn't have different rules for myself. These are all the thoughts that run through my head, on repeat, and it is exhausting. 

Anyway, it took me to the 24th for me to email her ID doc and send her pictures. Not that she needed to see them, really. I mean, they look exactly like what she's seen before. Anyway, she emailed me right back and called in a script for Doxy. We scheduled a zoom meeting for the 26th (Dr. Hahn is in DC). 

Ugh. I just can't. On the 26th, I noticed that I had not heard anything from CVS (she called it in on the 24th), so I called. Fifteen minutes later I get someone on the phone. They only have two bottles of Doxy and they don't know when they are getting more. "Its on order" she said. I've heard that before. She told me that a different CVS has four bottles and another one has six. I just can't do this again. 

Another update I don't think I've talked about is how we had to start a beta blocker for Harlie's heart issue that came up since August or so. It was an issue in Boston that bought her a longer stay in the hospital. Anyway, it is a compounded medication, which requires us to go to a specialty pharmacy (not CVS). So, I suppose if I'm already going to a different pharmacy, maybe I should send the Doxy there. So, I call and a REAL PERSON answers the phone! He said they have to order it and would have it the next day. Also he said they will try to make sure that they have it when she needs a refill each month. So, I sent an email to her doctor asking her to send the script there instead of CVS. While I am certainly NOT happy, I do feel better about not having to deal with CVS regarding this particular medication. 

Also, on the 24th, I was at work. I missed a call and I recognized the number, but couldn't remember why. Then I got an email message to call the nurse at Harlie's school. Ugh. I know it sounds crazy, but for a few seconds I sort of panic. I mean, it's a "controlled" panic, in that I don't think anyone would be able to look at me and know that I'm freaking out on the inside. But, I was. The school nurse put Harlie's nurse on the phone and she told me that Harlie was having some shortness of breath, (or labored breathing? I can't remember) a scratchy throat and increased secretions. But, her sats were good and she didn't have a fever. She said they had been sitting in the clinic for a few minutes and she seemed fine and she said she wanted to go back to class. So, they did. 

But, when she got home, her voice sounded really strained and she didn't look like herself. She ended up staying home Thursday and Friday. I can't believe it took this long to get to her. Crazy. Seems like we aren't even giving it to each other. There are days in between one feeling better and one feeling bad.

We had our zoom meeting on Friday. I like this doctor so much. I guess if you're going through something crappy, it is really nice to have good people in your corner. She asked me when I first noticed the abscess, and I had to admit that it took me several days to let her know. I just knew there was no denying it once I told her. She said she got it, which is one of the reasons why I like her so much. I wasn't able to actually start her on Doxy until the 27th. She said that I need to check in with her in two weeks. Hopefully the abscess will respond. I'm not even going to talk about what we do if it doesn't respond. We'll have to cross that bridge when we get there. 

Since January has been so crappy, I haven't taken any pictures. Well, except of the dogs. They are always cute, no matter what is going on in this crazy house. So, here's Mabel, since it has been a while.

That's my blanket she's stealing, by the way.

Mabel staring down a squirrel.

As always, thanks for reading! 

Much love,

Christy xo

Post-Op Day 3 (TMJ Replacement)

 Hi. This morning Tom took an Uber to the airport to go pick up our rental minivan. I walked to the hospital. Harlie was asleep when I got here. The nurse came in and said, "Has anyone talked to you yet?" Um, no. That sounds a bit ominous. She went on to tell me that Harlie had an 18-beat of ventricular tachycardia at 3:30am. They did an EKG. They didn't call us because they didn't want to wake us up to tell us that she was "fine." But, electrophysiology (EP/pacemaker docs) need to weigh in before they will discharge her. Also, her blood pressure has been lower than her normally already low blood pressures since the vtach event. 

In the grand scope of Harlie, her heart has really been the least of her problems. We have been very thankful, since we've really had to focus on other things. But, we know that her heart is not "fine" long term. We've always known that one day her heart will become more of an issue that we will have to face. 

That's kind of happened with her pacemaker wire going bad. She got her new pacemaker generator in May of 2022. She got her first pacemaker generator at 5 years old. So, that generator lasted about 10 years. The generator is the battery, basically. The more the pacemaker is used, the more it uses the battery, the faster it gets drained. I think they told me that based on her current usage, she has about 4 more years of battery. She's had this battery for 1.5 years. I don't think the wire is going to last 4 more years, based on what they've been telling me. So, they will replace the wires and the generator next time. Ugh. Next time.

Anyway, all this to say that I am always kind of anticipating the beginning of her heart problems. Is this it? Or not? UGH! Not to mention the slap in the face we are feeling walking in here thinking we would be on the road by noon, to find out we have this whole new issue. 

An EP resident just came by and said that we are waiting for one the docs in charge to come check out her pacemaker. He said that they have a lot of patients. 😑 No problem. We just have about a 10 hour drive in front of us. 

Still waiting...

11:30am, Plastics just came by and said they want a CT scan. They said it can be done outpatient. But, that is way easier said than done. That is a mountain that I don't want to climb. It would be way easier to just get it done now, while we are waiting anyway. Honestly, things aren't looking good for discharge today. 

We currently have no hotel room for tonight. We have a rental car that is due in Richmond tomorrow morning. There are no flights available tomorrow. I am worried about Harlie. Cooper has his first homecoming dance tomorrow night. Harlie is oozing a little from her incisions and plastics is like, "looks good, a little oozing is normal." But, my brain is remembering that we left here one time when all looked good and she bled like crazy after we left. I don't feel any comfort and my stomach is in knots and I'm waiting for the other shoe to drop. We don't even know if they will let her go home today, regardless.

Harlie just told me that her vision is blurry. Ugh.

We can extend the car, I believe. We'll have to find a hotel room for tonight. Or, if they will do a late discharge, we get on the road late this afternoon. I don't know. I'll update when I know more. 

1:30pm, Just had her CT scan. EP docs came and adjusted her pacemaker. They changed her low heart rate from 60 to 70. So, her pacemaker will keep her from going below 70 now. I think we just need cardiology to let us know if we can resume one of her heart meds and if they will let us go home. If they say we can go, we are just going to get on the road asap. 

Deep breaths.... today has been crazy. I've seen a lot of conversations happening outside her door. I am not very forceful, but I made myself go out there and I asked if they were talking about Harlie. When they said yes, I asked if I could be helpful. 

Here's a basic summary...

They should've called us to let us know that there was an event that could potentially alter discharge plans. That would have avoided us giving up our hotel room and incurring costs by ubering to the airport and committing to the rental car (and now having to store/park it, which is super expensive). We used points to rent it for 24 hours - not realizing that we would have it for DAYS.

When we come into a hospital for one specialty (Plastics) it has been difficult to manage who is the lead, where she goes in the hospital, etc. For example, when we go to Children's National in DC, she goes to the cardiac unit - and they make whatever specialty come to the cardiac unit to see her. They "protect" their cardiac kids by wanting to be responsible for them. At other hospitals, it doesn't work like that. In the past (like every time, which has been a lot considering we've been coming here for 11 years now) since she enters under Plastics, they want to send her to the Medical/surgical unit. Makes sense, except those nurses and doctors don't understand her heart issues. For example, she has a Fontan circulation, and she shouldn't ever get dehydrated. A med/surgical nurse probably has no idea! Plus, the monitors show her heart craziness, and they don't like it. So the nurses don't like it. Then they spend a lot of time on the phone with the cardiac unit, until everyone gets over it, then they transfer her to the cardiac unit. I know this because it has literally happened every single time. Seems like a bunch of unnecessary energy, so I try to tell them this every time we come here. But, they look at me like I'm freaking crazy. 

Even once we are in the cardiac unit (for non cardiac issues) they treat her like - oh, no big deal, she's not here for cardiac issues - so move along to more critical patients. It leaves me feeling like we don't belong anywhere. She is a complex patient - and she's being treated like she was here for something routine, which can be dangerous.  

We are on Day freaking 3 - and today I asked the nurse and a person I had never seen before if they were discussing Harlie. Turns out this doctor had no idea we were here! Um, we weren't hiding. If she had known, she would've come to see us before. Well, we are actually IN a cardiac unit how would I know that no one knew we were here? WTH? By the way, WHO THE HELL ROUNDED ON HER YESTERDAY, THEN?! 

So, apparently she is IN the cardiac unit, but under Plastics. Um, okay, that's not unusual. However, during rounds yesterday there was no one from plastics, so what the hell? How was I supposed to know that there was no one in cardiology on her service?  

I'm pretty sure that despite the fact I was told that they were keeping track of her Ins and Outs, that she has numerous working IVs, and that she has a g-tube, they let her get dehydrated. The glorious thing about a g-tube is that we have the power to control that. Dehydration would explain her low blood pressures. Plus, she hasn't been herself at all - hard to tell exact cause(s) since she's miserable from surgery, in pain, on Oxy, and in general over all of this. But, if she's dehydrated, she would feel terrible, too. Today I took her to the bathroom and in my opinion her urine looked too dark  - so I tubed her some water. That made me ask her nurse if they have been giving her her water flushes (four ounces of water, three times per day). Nope. They have not been giving her water. How is that possible? How do you let a cardiac patient not get any fluids?

Finally, late in the afternoon, we were told that they aren't comfortable sending her home until they figure out this lower than normal blood pressure. They held one of her heart medications that she's been on her whole life. You can't just do that and be like, okay, new normal - without some checks. Plus, at 3pm she refused her tube feeding and that is a major red flag - not tolerating feeds will buy you more time in a hospital for sure. So, she said they want to keep her at least another 24-48 hours! 

We don't want to push Harlie out of the hospital if she isn't ready to leave. Trust me. However, a little communication would've been way better. I just feel like we are vital members of her team, and we can't help if we think that cardiology is involved when they actually aren't. I try to think of ways that I can avoid this happening in the future and then I remember that I don't work here! 

Also, we don't understand how she's been trending lower than they are comfortable with blood pressures and it took ALL day for them to start IV fluids. All day!!! At this point, we HOPE that she was dehydrated, because that could be an easy fix. So, cross your fingers. 

A friend of ours came to our rescue and gave us her hotel points and made us reservations at the Courtyard Marriot for the next two nights. Thank God. Seriously, we can't that you enough! She's seriously the best. 

Tom started thinking through logistics and he said it would be our luck to turn in this minivan, to have to go rent one on Sunday, and since it is the weekend, they wouldn't have any available. This has happened to us in the past. We have a total memory of trying to find one the three of us could fit in. So, he said he was afraid to let it go. We looked at flights again - and tickets were $1,000 per ticket! So, we are just going to keep the car. Our nurse today is awesome and she felt really bad over what happened today, so she called social work to come see if they could help. They gave us parking at the hospital for three days (to park all day today at a children's hospital - parking was $50!!). So, we are going to keep the rental at the hospital, and hope like hell that we get to leave Sunday. 

At around 5pm we left to go check in to the hotel. We had our luggage in the van. In leaving the parking garage, Tom realized he left the parking ticket thing in his jacket, which was in Harlie's room, so the garage wouldn't let us out. Thank God there was no one behind us, so he backed up, out of the way and I jumped out and ran back up to her room to get it. I can't tell you how stressed we felt. All of it - the miscommunication, not being heard, worrying about Harlie, the boys, etc. I ran back to the car and we headed to the hotel. Poor Tom has to be a rock all the time and he was trying to get through hellacious traffic and pedestrian traffic, one way streets, etc., when he almost hit a pedestrian crossing in front of us. He was pissed and Tom said he was sorry - but that guy didn't care. Ugh! We just needed to turn things around and that felt totally impossible. 

We checked in to our hotel, then drove back to the hospital parking garage. Parked it, then walked to dinner. Now we are back in her room. She is complaining of pain and her jaw looks more swollen to me. She also has more bleeding/oozing. Ugh. 

It is now after 9pm and we need to get out of here and find a way to relax, regroup and get a better attitude. There's only so much we can control and being mad is not something I want to be longer than necessary. We have communicated our feelings here. Our nurse was so great today and she told me to keep doing what I'm doing. She will be back tomorrow, which is great. 

Again, I don't have time to proofread, so I'm sorry if I repeated myself, made mistakes, whatever. Today was just a really hard day. But, we have had plenty of them and lived to tell the tale. We are going to miss Cooper going to homecoming and we are sad about that. I feel so bad that we can't be the parents we want to be to the boys sometimes. But, they are so good and they go with the flow and tells us they are fine and that they love us. 😊 Hopefully, tomorrow will be a better day and that Harlie will start to feel a little bit better and that all these kinks are worked out. 

Thank you for all your support! Much love,

Christy xo

Post-Op Day 2 (TMJ Replacement)

Hi, Harlie had a "good" night last night. They said she slept all night long, which is great. She seems really unhappy and quiet this morning. They said they gave her Oxy earlier, so maybe that has something to do with it. We are shocked at the small amount of swelling and bruising. She looks "great" compared to the last time and this one he did more manipulation than the last time. Crazy! Must be that med - which has us wondering where the hell that med was for her last few surgeries? 

Plastics is supposed to come soon and remove the dressings from her incisions. It sounds like they are going to say we can take her home soon. We are hoping for tomorrow (which was the original "plan"). Tomorrow would be good because we only have our hotel room for tonight. They are at full capacity, so it isn't looking good for us to stay there tomorrow night if we can't leave tomorrow. We already checked another local hotel and the rate was over $500! Tom has been looking at flights and they are ridiculous! It would cost us $500 per person - and the times weren't really workable for being discharged from the hospital and getting to the airport and through security. So, we are going to rent a car and drive the 550 miles/10 hours. Tom has already driven 10,000+ miles since June. So, not ideal. But, we don't really have a choice. I don't know how people can afford to travel! 

On surgery day, we met another couple with a young child. They said they live in Idaho and have spent most of the last six months here in Boston for his medical care! He looked to be about one - so probably half his life! It just makes me sad that so many families have to live like this. Most people don't ever see them - but I promise you - there are so many of us! This is exactly how We Heart Harlie & Friends came to be. I know most people can't relate to our cause - once you have healthy children, you are unlikely to ever experience this kind of life. You lucky people! Haha! Anyway, if you're local and want to support us - you can sign up for the Turkey Trot here. There is an early bird discount (EB23) good through 10/15. 

Harlie has been super quiet so far today and seems pretty unhappy. I don't know if it is because she's just ticked about it all (totally understandable) or if it is the pain meds. Right now, she is sacked out and we are waiting for Dr. Resnick to come. So, I'll write more after that.

Dr. Resnick came by and tried to remove the dressings. Harlie was uncooperative. He told her she could take them off if she wanted. She didn't want to, but she did it anyway. The incisions (four of them) look good. There are lots of sutures, which will be so fun to remove. It is so crazy, Dr. Resnick was explaining to us after her surgery that there are layers of sutures. There are clear ones underneath, and they dissolve. The black ones on top need to come out in about eight or nine days. This came up because Caylee found a clear suture that was working it's way out just a few weeks ago. That was from her surgery in March. Even crazier - a suture came out of her trach stoma earlier this year. That suture was put there during her LTR in FEBRUARY of 2018!!! Isn't that nuts?! 

Anyway, looks like we are going to take her home tomorrow. So, that's great! After her dressings came off and we said goodbye to Dr. Resnick (I should've grabbed a pic of them together - but Harlie was less than thrilled) I got her up and did a little wash, brushed her hair, changed her trach (they put in a cuffed Bivona for surgery and even though it was uncuffed after, she was not a fan and asked me to put her normal Shiley in), and put on clean pjs. She looked like she felt a little better after. Then we took her for a little walk to some spots in the hospital.  

Oh, we talked about how she has WAY less bruising and swelling than last time - which is crazy considering this surgery was more work than the last one. I asked him about that med and he said she was on it last time, too. So, he doesn't really know why she looks better. Haha! We'll see how she looks tomorrow...

She took a nap and we went to lunch. I went to Target and got her a new pair of pjs for the trip home tomorrow. When we got back, we took her to the outdoor garden on the 12th floor. 

Then we stopped in the playroom and did a puzzle together.

She is definitely tired now. It is 7pm and I am getting hangry. So, I have to sign off and we have to go eat dinner. Please forgive typos, I don't have time to proofread right now. We have another very long day of traveling in front of us tomorrow. I feel so bad making Harlie travel so much on post-op day 3! Plus, I am so afraid that all that moving around is going to make her start to bleed. She had stopped bleeding in April 2021, but started to bleed either during the drive home or within just a day or two of getting home (I can't remember). She didn't stop bleeding for what felt like weeks and we ended up back in our local ER. Ugh, my PTSD is going bananas this stay. 

 Okay, thanks for all the love!

Christy xo

Post-Op Day 1 (TMJ Replacement)

Hi. Well, as I said yesterday, we finally got in to see Harlie at 7:35pm in the CICU. She was miserable. No matter how many times we have been through this, it never gets easier. In fact, I would argue that it actually gets more difficult. I've said before, that every time we come back to the hospital, I'm bringing all the other stays with me. 

If you know Harlie personally, then you know that she is not an affectionate person. She is definitely NOT a hugger. But, post-op, she wanted to hug. She was complaining of a lot of pain. So, her nurse gave her Dilaudid and that seemed to calm her down. By this time, it was well after 8pm and Tom and I had not eaten dinner. 

While we were waiting to see her (very irritated) Tom and I were talking about how hard this is on parents. 

1. We traveled here - so we are starting off a hospital stay tired from the stress of traveling for medical care. I haven't even been able to tell you that last week we had to say goodbye to Tom's step dad, my father in law, and the children's grandfather (PapPap), Cal Bowser. He was a great man and we will all miss him very much. We went to his service in PA on Thursday and Friday. While we loved being able to see Tom's mom and sisters and family (and meet a lot of their friends), it was definitely a very sad, emotional few days. We drove home on Saturday. On Sunday we unpacked, did laundry and then re-packed for our early flight Monday. 

2. You can't eat when you get hungry. All meals are eaten when time allows you to do so. On surgery day, they took her back around 10:30am, almost two hours later than expected. By that time, the cafeteria is closed for breakfast and preparing for lunch. So, we found a snack in a fast food kinda place downstairs. This is where we sat for two hours (through dinner time) waiting to go in to see her.

3. You spend all day sitting in rooms with other people in chairs that aren't comfortable. Or in our case, walking around. If you know Tom personally, then you know that sitting around waiting isn't a skill of his. I convinced him to walk to the local Athleta store (3 miles away) since I had some credit there. I bought a pair of pants that are comfortable, but look nicer than tights. I'm choosing to be excited about my new find. Haha! We were pretty tired and didn't want to risk having to take too long to walk back and miss the surgeon. So, we took an Uber back. 

4. Worrying - being concerned about your child's well being takes a lot of energy. 

Add all of those things up together and you can't help but be exhausted, hungry and grouchy. All of this happens BEFORE the recovery even starts! 

Walking into the hospital this morning, I just felt sick. Doing all of this again, over and over (without ideal results) is like the worst groundhog day ever. I said to Tom, "I don't want to do this to her again. I'm done with jaw surgeries". Tom said, "Well, in our defense, we didn't want to do this one." Truth. Haha! 

She is okay today - she is definitely hurting. 

They are giving her Dexa something, an anti swelling medication. I don't remember them giving that to her last time. I'm hoping that is the ticket to way less swelling than she's had in the past. 

The anesthesiologist who had her yesterday came by to check on her. He told us that she signed something when she woke up in the OR. None of them knew sign, so they got out their phones and started googling. They learned that she was signing "hurt". So, they gave her more pain medicine. I love when she can communicate her needs and I love it when people try to understand her, even when it takes more effort. He also said that they were able to understand that she asked if the doctor fixed her left ear lobe. They told her yes. Cute. Its the little things. Of course after it heals, we will have to pierce that lobe again.  

She got moved to the step down unit today. This step down unit is pretty impressive so far. They are being really good about managing her pain. I was so tired today that Tom made me take a nap. I fought it for a second, but when he put the couch into a bed, went and got me a pillow and sheets, I had no choice. Haha! 

While the nap was good and very much needed - it is not the solution to my kind of tired. I am struggling this time around. I hate to say it (because I am so afraid I will be punished by some greater power) but I am so tired of being inside a hospital. I am tired of having the same conversations with doctors and nurses. I'm tired of watching Harlie go through too much crap. When she is miserable, I am miserable. When she hurts, I hurt. She breaks my heart. She's already asked me when she can eat. What she means is when can she chew up food and eat it like most people do. Somehow she thinks this surgery was to advance her abilities. But, it wasn't that kind of surgery. The reality is that I don't think she will ever be able to chew food up and eat it. Her teeth don't come together like that. I wish that wasn't a goal of hers. I wish that she would come to the conclusion that she can have a fine, happy, good life without eating food like most people do. It breaks my heart, and that makes me so incredibly tired. 

I spoke with the infectious disease doctor today. She is adding a short term antibiotic to be on the safe side. We are going to leave her on the doxy for another 4-6 weeks, also to be on the safe side. She said that this infection is so rare that there is no protocol for it - we are just making it up. She said she found a few articles. Isn't that crazy? I don't even know what it's called. A shitty deal, that's what it should be called. Anyway, I pray that this infection is gone for good. 

Well, I'm signing off for today. It is 8:30pm and we still have to walk back to the hotel. 

Thanks for all the love. 

Christy xo

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