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

Medical Updates

Hi! It has been a while since I've given a medical update. So, here goes...

Temporomandibular Joint (TMJ) Update

Here's a recap of her TMJ saga:

April 2021 - She had her first custom prosthetic TMJs placed on both the left and the right. This was one of her most brutal surgeries/recoveries. This is the hospitalization when her tablet was stolen from her bed while she slept. And this is the one when she couldn't stop bleeding for weeks. It was a horrible time. Anyway...

May 2021 - a growth appeared at her incision sites on both sides. I took her to several doctors to try and find out what it was.  

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 medicated temporary spacer in it's place. While she recovered from this surgery, they made a new custom prosthetic TMJ for her. 

October 2023 - the new custom right TMJ was placed, and the left TMJ was repaired since he found it to be dislocated. This was very unfortunate, because it meant that he had to go into the left side, which opens up the possibility of post operative infections.

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. 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. 

January 2024 - The infection reappeared on the left side (not the right). The left side is the one that has the original TMJ and was dislocated. When I was ready, I contacted our infectious disease doc and she put her back on Doxy. 

December 2024 - On Christmas morning, I discovered that the infection reappeared - even though she has been on Doxy consistently since January 2024. 

January 2025 - I contacted her infectious disease doctor. She put her on Linezolid for 12 days and after that course, we went back on Doxy. The infection looks unchanged since December. So, I had to reach out to her surgeon at Boston Children's Hospital. I explained to both doctors that we are scheduled to go to Hawaii for her Make-A-Wish trip in March. There is no way we have time for her to have surgery before then. So, can it wait till after the trip? They both felt that it would be okay to wait since she will remain on Doxy. 

Trying to find a "convenient" time for this surgery was a challenge. Tom will miss a week of work in March. Then he starts a big job as soon as he gets back. This meant he didn't want to be away in April. We Heart Harlie & Friends has a major fundraiser April 26, so I didn't want to be away during that. She also has summer camp in June. So, she needs to have the surgery before and have enough time to recover from that before camp. I hate for her to miss school - especially if it is the end of the year. But, we really had no choice. 

May 13, 2025 - She is scheduled to have her original custom prosthetic TMJ removed and he will place a medicated temporary spacer. They will then make a new TMJ for her and we will have to return to Boston (hopefully before it gets cold up there) to have the new one put in. We will have to talk about what he can do to try and prevent the right side from becoming dislocated during this process. I fear that we will be doing this forever if we can't prevent a new infection from brewing on either side. 

I have to admit that I am NOT looking forward to returning to Boston again. I just don't know how many more trips and surgeries we can handle. This is not something I would ever choose for her at this point. It is out of my control. We cannot leave an infection in her jaw. But, I am so DONE. I say that, but I know I can't be done. I have to make her go again - and then again in the summer/fall. 

Harlie's Left Eye

One of Harlie's original birth defects was that her left eyelid didn't form correctly. When she was born, she actually couldn't close her left eye on her own. After a few months, she was able to gain some closure. But, it has never fully closed. This leaves her eye vulnerable to dust and particles, etc. When she was in the hospital all those months in 2017 and 2018 (two medical induced comas - one lasting 7 days the other lasting 22 days) they had a hard time figuring out a way to protect that left eye. They tried taping her eyes shut, putting masks over her eyes, sometimes both at the same time. But, her corneas still ended up with scarring. She sees an ophthalmologist yearly. 

Well, this past fall her ophthalmologist said that her scarring has gotten worse and that she was surprised she could see as well as she could out of that left eye. She explained to Harlie that she must put eye gel in her eye before she falls asleep every single night. Surprisingly, she listened to her doctor and has been really good about it - even though she hates it. However, her doctor said she thinks it is time to talk to a surgeon to see if something can be done to her eyelid to help with closure, which would hopefully stop/prevent more damage to her cornea. 

So, when we scheduled her TMJ surgery in Boston, it occurred to me that it might be good to get a consultation from a surgeon there, who likely sees more kids with these kinds of defects. So, I asked her plastic surgeon about it. They told me that she would need to see an oculoplastic surgeon. So, I called that office and asked if we could schedule a consultation. Not surprisingly, this has proven to be a difficult ask. 

I was thinking they could come and take a look at her while we are there for pre-op/surgery the week of May 12th. Then, IF they felt that they could help her situation, they could schedule surgery at the same time she is getting her "final" TMJ placed in the summer/fall of 2025. 

Of course they asked that her records and notes from her eye doc here be sent there for review. The office in Boston told me that they are scheduling appointments for November 2025 at this point. But, he is going to talk to the team since we are traveling and ultimately, I'm trying to minimize the number of surgeries she has to have. After a few days, I received another phone call and he told me that there are three oculoplastic surgeons. But, only one of them can (?) operate on patients who are 18 (the other two are pediatric only) and that it looks like she (or all of them?) is away at a conference that week. He asked if we could come another time. I told him that it is extremely difficult and costly for us to go there and if I can't combine visits, I just can't make it work. I'm sorry, I just can't. That would be a THIRD trip to Boston in one year (when I want to go zero times) and I am only human and I'm sorry that is just TOO much! 

I cannot travel with Harlie alone - I need Tom. And Tom is missing work in March, then again in May, then again in June (to take her to camp) then again to take/pick up Cooper from camp in Maine (he was selected to be a counselor in training at camp this summer!), then again for her 2nd stage surgery. Also, keep in mind that I don't even know that they can help her and I don't even know if insurance would approve it, etc. All of that is really an impossible schedule. 

He said he understood and he actually sounded pretty sympathetic. So, he said he was going to talk to the team and get back to me. Honestly, I don't know what he can do. Sounds like a pipe dream that isn't going to happen. Well, you can't say I didn't try. 

Guardianship

So, now that Harlie is 18 and she isn't a typical 18 year old, I have to think about a guardianship. This has been difficult for me because most of the time when you hear about a guardianship, it refers to an "incapacitated" adult. Even though Harlie is delayed and has a heck of a complicated medical life, she is not incapacitated. However, according to her recent school tests, evaluations and IEP, she is very delayed (she's basically on a 2nd grade level and she is in the 11th grade). I'm thinking that an adult who is operating on a 2nd grade level could benefit from some protection financially and she definitely needs help navigating her medical complexities and decisions. 

But, as usual, nothing is simple. I've now been working on this for months and I feel like I've made no progress. Medically, we don't have a diagnosis that explains that she is delayed - or why she is delayed. She has no diagnosis of a learning disability or anything neurological. All of her IEP and school stuff talks about what a hard worker she is, how much she wants to learn, etc. So, we need to get a psychological evaluation to show her cognitive ability/IQ and adaptive skills. I'll spare you the agonizing steps I've taken to come to the learning that most facilities who do this testing in our area are not approved by Medicaid (which is what Harlie has because of her medical qualifications). So, I asked if I could just pay for it privately. The answer is no - because legally, they aren't allowed to bill patients who have Medicaid. So, we can't get what we need? WTH? 

So, that's where we stand. My attorney said that we can start the process with what we have and see what happens.  So, I guess that's what we'll do.  There are times when my life seems unreal and ridiculously overwhelming. I mean, one of these issues would be a lot to deal with. And these are just the ones I'm talking about in this post! 

Cardiology

Harlie had her annual cardiology appointment on Tuesday, February 11. She had an echocardiogram (an ultrasound of her heart). I think that took over an hour, but it felt like forever. 

It was actually interesting because the person doing it was training so I got to hear what they were saying about the echo while it was happening. I gained a new respect for the skill they have to have to get good pictures and videos of a heart - especially when there are challenges like tons of scar tissue and an unusual heart anatomy. However, even though I knew that, after a while I started to get a little concerned that maybe some issue has developed since her last echo and that was causing it to be even more difficult. 

It made me remember when I was pregnant with Harlie and we were sent to Children's National for a fetal echo. We did not have any idea that her heart was wacky at the time and the echo took forever.  In fact, the room is dark when they do it and there is always a hum in a hospital and I actually fell asleep for a few minutes during the exam! Then the tech stood up and said, "huh, the baby isn't letting me see all four chambers of the heart, I'm going to go get the doctor" (or something like that) and then the doctor came in and did the echo for a while then he asked us to go wait in a conference room where there was a box of tissues on the table. 😑 Just in case you don't know, Harlie's heart didn't have four chambers.

Anyway, back to present day, finally they were done her echo and we returned to the regular exam room. When her cardiologist came in a few minutes later, he said, "Her echo looks great." Haha! Ah, the emotional roller coasters I ride when no one else knows I'm riding them. 

Then he said something about since she's 18 now, it is probably a good idea to start thinking about getting a heart cath done to take a look at things. Honestly I don't know how I could work in a heart cath in our schedule right now. It is hard to remember exactly what is said in some of her appointments. Especially after I ride a roller coaster in my brain. But, he said something about her liver and monitoring that and I swear I was like, "Oh yea, I forgot about that issue!" For a little while after the appointment, I reflected on how I could forget such a thing. I mean, it was something that REALLY worried me last year, for quite a while. We've had numerous appointments regarding that issue in the past year. But, honestly, it is survival. I have to compartmentalize and there are only so many tabs I can have open in my brain. Sometimes I just have to say, "that isn't today's problem." 

Anyway, since I had him in front of me, I asked him about my guardianship challenge. I wanted to know what the worst case scenario was if I cannot get it, medically speaking. He said medically, he doesn't think I'm going to have a problem not having a guardianship for her. He said he will write up something for me that explains that there are several factors (just within the cardiology aspect) that contribute to her developmental delay. Like prolonged oxygen deprivation (she has had low oxygen saturations her entire life), cardiac arrests, surgeries, etc. all contribute to brain development issues. 

While it would be kind of nice to get some answers (not that I ever really expect any) as to why she is the way she is or exactly where is she IQ wise or cognitively, he thinks I could put this on the back burner as we have more pressing issues (obviously). I do love when a doctor can stand back and look at the whole picture of Harlie, versus just zeroing in on their specialty. I really love this cardiologist and trust him and I'm grateful to have him in our corner.

So, we'll just see what happens. I've reached out to another contact about the psych eval and maybe one day I'll get it worked out. For now, this is where I'll end this post. I wonder if y'all get as exhausted reading some of my posts as I get writing them. I swear, sometimes I still can't believe this is our life and that we've been living it for over 18 years. 

Thank you for reading and for your continued support! We couldn't survive without it!

Much love,

Christy xo

Here's a pic of our snowy view from the 4th floor of the Children's Pavilion downtown.

Make-A-Wish and Family Photos

The time has come for Harlie's Make-A-Wish trip. Well, the planning part anyway. 

I really put off this whole MAW thing for years (obviously). Her social worker at CNMC had mentioned that she was going to put a referral in for Harlie many years ago (right after Harlie's near death experience in March of 2018). I didn't really want to think about it back then, so I never followed up. It also took Harlie about a year to fully recover from that hospitalization, so I couldn't think about MAW at that time. 

Anyway, it was the summer before she turned 17 that I saw a commercial that said that it is only for kids under 18. Realizing that she was going to lose her chance, I knew I couldn't put it off any longer. Just a few days after she turned 17 (in 2023), I wrote to one of her cardiologists about it. The approval came THAT AFTERNOON! Isn't that crazy? 

Then we had to do a zoom meeting with a MAW volunteer and let Harlie meet her and answer some questions. We had to figure out what Harlie's wish would be. So, we asked her, "Harlie, if you could have anything you wanted, what would it be?" She replied, "I'd like to make bracelets." Um, no. Think bigger. "I'd like to see Wild Kratts Live." Bigger! (We took her to see Wild Kratts Live in May 2024. The tickets were a Christmas present that year.)

So, we asked her if she could go anywhere, where would she like to go? She said "Japan!" Too big. Haha! She says she likes the architecture and flowers/trees in Japan - and the ninjas. Haha! Then she said, "I'd like to go on a safari, like you did." Yes, when I worked at Operation Smile many moons ago, I went to Kenya on a work trip and then went on some safaris with some work friends. That was such an amazing experience and man, do I wish we could give that to Harlie. But, still, too big. MAW doesn't do international trips anymore. So, after some thinking and researching, she decided she would like to go to Hawaii. 

There's been quite a few hoops to jump through. They had a hard time with us not wanting to take a nurse with us. We just aren't there anymore with nursing. We would have to start all over with a nursing agency and we don't have any interest in that. So, that took some effort. They eventually said we don't have to take one. Murphy is over 18, so that took some effort, too. Regardless, all was approved. 

They sent us a worksheet to help us figure out which island we wanted to go to and what we wanted to do while there. Based on what she wanted to see and do, we selected O'ahu (also it is the island with the hospital, haha). Then they gave us a window of travel and we had to pick good/bad times to travel. I selected Murphy's spring break first, since I knew it would be hard/detrimental for him to miss a whole week of his college courses. Then we just had to wait for our time to come. 

Now, it is almost Christmas 2024 and we just got our dates for travel - March 8-15th, Murphy's spring break. We got our first choice!

I'm already stressing about it. I know that this is what they do, and they will do an amazing job. But, at the end of the day, we have to travel, and traveling is not easy for me. There will be packing and medical stuff, oxygen and her chair and long flights. What if she gets sick right before? Or while we are there?! We are going to have to ship some of her medical stuff, and we are going to have to rent some stuff while there. We can't take her power chair on flights, so we'll have to rent a chair for her there. 

Also, I know MAW is an amazing organization and I am grateful that it exists. However, no one wants to qualify. Well, I guess I can't speak for other parents. So, we didn't want to qualify. There's a whole emotional thing that goes with the reality that your child is getting a wish granted. I would give anything for her to be a healthy 18 year old who is off to college or work or wherever she would have wanted to go. I'm guessing she would've wanted to go off to college because she loves learning and she loves her independence. And the girl has goals - a doctor for babies and a veterinarian! Man, I can't let myself think like that... Instead we are working on a legal guardianship for her and a MAW trip. 

So, this isn't going to be easy for me. Just thinking about it brings me to tears. There are just so many feelings. Sometimes there's a fight,  or a tug of war, rather, between the grief in me and the gratitude. Either way I come out crying. Unfortunately, in life, the good doesn't cancel out the bad. All the MAW trips in the world wouldn't change what is difficult or impossible to manage. And they wouldn't give us back what we've lost. I do try so hard to be grateful - but I'm learning that gratitude isn't the Tylenol for grief. I'm going to feel sad about what we've lost no matter what. 

But, at the end of the day, I want Harlie to see things and experience things and this is something we could NEVER give her on our own. I also want us, and her brothers to have as many great memories with her as possible. So, I'm really hoping this all comes together so those things can happen. 

Since I haven't posted pictures in a while, here are some photos our dear friend Paige took back in November. Paige has been photographing my family since our engagement photos in 2002. 

Here is Paige. 🙂

I took some pics before Paige arrived.

Here are more of the ones Paige took.

Well, that's it for this post. Hopefully, I'll have time soon to write more. You know I have lots to say, haha! Thank you for reading!

Much love,

Christy xo

Liver Update

Well, it's been like eight months since my last blog post. I started this post back in February. I think I'll just start with what I wrote then and go from there..

February, 2024, Fontan Associated Liver Disease (FALD)

Hi. Harlie had her appointment with the hepatologist (liver doctor) on February 16th. I really felt like a fish out of water there. Since kids typically don't have liver issues, there really aren't many pediatric hepatologists out there. So, we had to see an adult doctor, who sees all adults. Well, except for Harlie, of course. We definitely got some stares and I'm sure people were wondering why the hell a little girl was seeing a liver doctor. She definitely does not look her age.

We saw a fellow or resident first (I can't remember and it really doesn't matter in this situation). He did the fibroscan (ultrasound) of her liver. Before he did it, he said that if the scan comes back that it is soft (which is good) then great. But if it comes back that it is hard (which is bad) there could be two reasons. One reason is that it is in some stage of cirrhosis. Another reason is that is "just" full of blood. So, if you think of a water balloon - the more water it has in it, the harder it feels. This is said to make one feel better, I suppose. But, I think the fact is that the liver should not be so full of blood that it is hard. I also think that in Harlie's case (a Fontan patient) that the liver being full of blood all the time is what causes the cirrhosis. So, again, I don't feel any comfort. 

Anyway, he did the ultrasound and then just left the room. I figured then that the scan wasn't good. I guess technically, he's not allowed to talk about it either way. But, I got the impression he didn't want to be there anymore. Ha, you and me both, buddy! He returned with the doctor. He was nice. But I definitely got the impression that they don't normally see teenagers in that practice. It just feels weird - and tiring - to always be cutting our own path vs. walking on a nice, established sidewalk. 

He said that if he just looked at her ultrasound/scan, then it would tell him that she has cirrhosis. Since it could be that it is "just" full of blood, he can't say with certainty. The only way to tell exactly is to do a liver biopsy, which is invasive and unnecessary at this time. He said if she were being evaluated for a heart transplant, for example, then they would want to know exactly how her liver was, so a biopsy would be necessary then. Luckily, we aren't there - yet. 

He said he wanted to get some blood work and he would be able to see how her liver is functioning. There's also a MELD score, which measures kidney function, liver function, blood clotting time and sodium level. So, you take all that information together to get a picture of how her liver is doing. Clearly, he didn't have all that information at the time, so we couldn't go over everything in person, which is a shame. He said she needs to be seen every six months. This sounds rather aggressive for something you really can't do anything about.  

Later that afternoon I received a bunch of notifications that information was available in her portal. So, I went and looked. Her fibroscan came back as Fibrosis = F4. I, of course, had to Google it... 

Ranges from stage F0 (no liver fibrosis) to F4 (liver cirrhosis). Stage F4 is also called liver cirrhosis, the final stage of progressive liver fibrosis.

Damn.

Luckily, her bloodwork all came back okay. Her MELD score is low, so that's great. She does have blood clotting issues and that's why she's had to see a hematologist. We've never really understood that - but maybe her liver is causing that issue. I'll have to ask when we see her hematologist again. 

I will admit that when I first saw the F4, it was pretty upsetting. It took me days/weeks to process it. Okay, fine, I'm still processing it. I mean, how do you manage that in your brain? She's only 17. But, I have to try to "ignore" that and focus on the MELD score and her other labs. As long as those are good, I guess that has to be good enough. Ugh, the games I have to play in my mind to make life be okay.

Her liver just feels like a ticking time bomb. I mean, really, it is only a matter of time till her labs begin to be affected. Then what? What will that look like? 

It is the same situation with her pacemaker. It is only a matter of time till her pacemaker gives out and needs to be fully replaced (not a simple surgery). It is also the same situation as her TMJ infection. It is only a matter of time before the antibiotics will not be able to fight off the infection and she'll need her left TMJ replaced. If I'm being brutally honest, it is the same situation as her heart. Eventually that will give out, too, and we'll be facing a heart transplant. As one doctor told me, sometimes the hearts can outlive the liver. Hard to say what will happen and when. 

Wow, I feel like this took a dark turn. But, it is our reality - whether I talk about it or not. I have been packing these fears away for many years. I remember when we met with Harlie's heart surgeon after her DKS surgery (her 3rd open heart surgery). He was originally planning on doing her DKS and Fontan operations at the same time. He changed his mind and decided to only do the DKS. I remember that Tom and I were pretty bummed because we didn't want to still have another major open heart surgery looming ahead. After the DKS, he told us that he never could have done both surgeries at the same time. He said she has "the world's worst scarring" and it took him forever to get through it. This meant she would be on the bypass machine too long - so he wouldn't have had time to do the Fontan, even if he planned or wanted to. He also told us that her heart would likely run out of gas in her late teens/early adulthood. At age three, that sounded so far away. At almost 18, that feels like right now. 

November, 2024

So, that's what I started eight months ago. Since then, she's seen a liver doctor two more times and turned 18. On August 30, she saw the same doctor for her six month follow up. Sometimes going to appointments wear me out. On this particular day, I knew we were going to the adult facility. So, I tried extra hard to give myself extra time for parking. That parking garage is terrible and I hate the elevator so, so much. There are two relatively small elevators and there are usually so many people in them that it can take several tries before we can get on an elevator with Harlie's chair. As I was about to pass the main entrance of the hospital, I was thinking about that and saw the valet line. I knew the elevator to get to her doctor was right near that entrance and in the last 18 years, I have NEVER used the valet parking. So, I decided to do it this time. I got in line and watched the guys work the line. OMG, so slow. He finally got to me and I asked him how much it cost, I think he said $5. But cash only. I didn't have any cash. Ugh. So, I got out of the line and headed to the dreaded parking garage. I drove through the entire garage and there was not a single spot to park. In one level, we were all stuck for five whole minutes. At this point, we were going to be late for our appointment. Not feeling like I had much of a choice, I returned to the valet line. I was thinking I would go get cash back from a purchase. As we were headed to her appointment I realized I didn't even have my debit card. So, I really had no way to get cash. Well, damn. This worried me for the rest of the appointment...

Anyway, the doctor ordered a vascular ultrasound two weeks in advance. So, when we were there he told us that her ultrasound showed that there's no liver cancer. Apparently, patients who have FALD are at an increased risk of liver cancer, so that vascular ultrasound was to check for liver cancer. I'm kinda glad I didn't know that. He also mentioned that we might want to switch to a different doctor. Back in the spring of 2024 VCU hired a pediatric hepatologist and he has been focused on research, but is supposed to start seeing patients soon. Other than that info, nothing else changed medically speaking since February. So, that's good. I made a note to see if that new doctor was available for her next appointment in six months.

Then, we headed back to valet to get the car. Ugh. I went up to the lady with my ticket and said, "Um, I think I have a problem." She said, "There are no problems." Ha! I wish! Anyway, I told her that I was so sorry, but I had no cash and no debit card. She said, "Well, there's no way you would've known that our credit card machine is broken, so today is no charge!" She was so nice! What a relief! Tom made fun of me because I was so worried about not being able to pay. Still had to wait over 30 minutes for my car to arrive, but you take the good with the bad and overall, I was happy. Super hungry (our appointment was 10:25 and by the time we got out of there it was well past 1pm!), but glad to be able to just load her chair in the car and go.

Just a few weeks later I received a call from a scheduler at VCU. She said that Dr. Karpen wanted to see Harlie and he was available October 2nd. Wow. That's kinda crazy. I read his bio, he seems impressive and I feel like we are lucky to get a pediatric hepatologist here in Richmond! I hope her insurance is okay with her seeing another liver doctor just over a month later. But, super convenient to have a doctor call me to schedule an appointment! I wish they were all like that! Haha! Bonus, too, he was going to see us at the Children's Pavilion - which is SO much better than going to the adult facility! No more parking worries! Woohoo! It must sound crazy how the "little things" like parking or elevators stress me out so much.  But, that's just the way it is.

When he came in to see us he said that we were his first patients at CHOR! Obviously not his first ever, of course. He was great and I really liked him. He ordered more labs and we spent a good amount of time letting him get to know her medical history and him explaining some stuff about liver disease. 

Honestly, we don't know anything more than she's at a much higher risk for FALD and liver cancer. Not only is she a Fontan, but she lived with really high pulmonary pressures for most of her life, which is not good for the liver. If I remember correctly, he doesn't think the fibroscans give accurate information. So, I'm just going to put that F4 rating out of my mind. He also has a better follow up plan - one year! So, hopefully, he'll still be at VCU next year and we'll get to see him again. 

That's it for her liver update. Overall, I feel better about it than I did in February. It is so easy for me to think about all the bad medical "luck" she's had over the last 18 years and immediately go to the worst places in my head. I have to work really hard to try and quiet those voices/fears and get myself in a better, less worried place. Until next time, of course. Then I get to do it all over again. 

Since it has been so long, I have a lot more I could share. But, I won't do it in this post. Hopefully, I'll get to work on my next post soon. 

As always, thank you for caring about our girl! 

Much love,

Christy xo

Heart Update

Hi. Here's another thing that's been on my mind - Harlie's heart. l think I'm just going to think out loud and hopefully it'll make some sense.

She has a Fontan (simple description - she is a single ventricle and her circulation works entirely different than a normal heart). 

She's had some NSVTs (non-sustained ventricular tachycardia) in August and October. I've tried to google this - but I think NSVT is different for patients with congenital heart disease. I don't need to know more than I need to know, so I just need Harlie's doctors to explain what it means to HER. 

She has a pacemaker. The wires that were put in her heart were put there during her very first open heart surgery when she was just four days old. That means that those wires are now over 17 years old. Apparently, that's getting old as far as pacemaker wires go. This issue has me confused. We've seen several Electrophysiologists (pacemaker docs) and I gotta tell you, I don't understand it. The next appointment we have, I'm making Tom go with us because it is impossible for me to go to an appointment that I don't understand the info - then come home and tell Tom anything useful about the appointment. 

I'm going to try to explain why I'm confused. The pacemaker has wires that go into her heart. They connect to the generator (battery) that is in her abdomen. The generator was put in when she was five years old. Oh my gosh, my memory is going bad. I can't remember how many times the generator has been replaced! Once? Twice? Ugh. Okay, I just searched my blog and found a post that I started writing about this subject and never finished! So, she had her first generator replacement surgery on May 6, 2022 (she was 15, so the first generator lasted 10 years). 

For a year to months prior to the first generator replacement, we had regular check ins and we watched the battery life decrease. When they put the magnet thing on her abdomen, it reads all the info from the generator and the battery and the computer will try and predict the battery life remaining, based on current usage. The more the pacemaker has to fire, the more battery it uses. With the first generator she had (from age 5-15) we had to call in pacemaker transmissions from our home phone. Leading up to the generator replacement was kind of stressful because they would be like 6 months left, 5 months left, 4 months left and I'm like so schedule it already! Anyway, so it was finally replaced in May of 2022. The new generator is awesome and hooks up to Harlie's tablet, so they set the transmission frequency so we don't have to do anything! That's my kind of device, haha!

During Harlie's TMJ surgery in April 2023, I remember the docs struggling with her pacemaker settings. Anytime she goes into surgery, they have to change the settings to be stronger or something for when she goes under anesthesia (also, it depends on what equipment the surgeon is going to use - some equipment can make the pacemaker do stuff the don't want it to do). After surgery, they change the settings back. While she was recovering in Boston, they asked me if I had heard anything about her wires. I was like, um, no. So, when we had her appointment with her pacemaker doc in August of 2023, I asked her if she received any clinical notes from Boston. She did and she noticed some readings that made her put a 48-hour Holter monitor on Harlie. She said that the wires are showing signs of age. I don't remember her words exactly - but the way I understood it is that she was having to adjust the way the pacemaker works because one of the wires wasn't working consistently, or something like that. That's when she told me that 17 years is getting up there in age for wires. 

She told me the signs to look for should the wires stop working. She said that Harlie would be lethargic and might not feel well and her heart rate would be less than 60 beats per minute (the pacemaker doesn't let her heart beat get below 60bpm). She said if the pacemaker were to suddenly stop working, her heart has an escape rhythm of about 30 some beats per minute (what her heart would beat on it's own - without the help of the pacemaker). So, we would be able to get her to the hospital. I wasn't told any of that when we were just looking at the battery dying. So, it sounds to me that the wires are a totally separate issue than the battery life. I mean, they can see how much battery life is predicted any time they want. So, it shouldn't run out of battery all of a sudden with no warning. 

So, when are these wires going to stop working? Replacing the wires is a bigger deal than just replacing the generator because the wires are in (or on) her heart. Of course, no one can tell me. So, one day in September, she could barely make it from the school bus to sitting in the chair in the kitchen. She didn't feel well, she looked terrible and was super tired! So, I ran and got the pulse ox and just knew that her heart rate was going to be less than 60bpm. But, it wasn't. So, then I took her temperature and she had a fever. So, I knew it wasn't a heart thing. Then we realized she had Covid. But, seriously, how is a parent supposed to live like this?! 

Then in October she had that TMJ surgery in Boston. During that hospitalization she had another run of NSVTs plus she had really low blood pressures. I can't remember if they upped her pacemaker low or if her cardiologist did it after - but around this time they changed her low setting from 60bpm to 70bpm. They also said that she needed to go on a beta blocker for the NSVTs and they wanted her to stop taking the Enalapril (she's been on that her whole life) because her blood pressures are too low. While that might not sound like much - that's three new things! 

We came home from Boston on October 14th, I believe. Then on Tuesday, October 24 - Harlie had an appointment with her local cardiologist to follow up on all her heart stuff. I really like him and was looking forward to talking with him. I just felt like he would give me his opinion on what is going on with her and he would tell me how worried I should be. Plus, I think he could help me understand this wire thing. 

When we got there she got an echo. That took about an hour. Apparently her anatomy makes imaging difficult. Plus, she has a lot of scar tissue around her heart. At any rate, the echo shows all her normal issues - no new issues, so that's good. While they were doing the echo, I emailed her cardiologist the clinical reports from Children's National and from Boston. That's when the doctor doing the echo told me that her cardiologist wasn't in town and we would be seeing a different doctor. Ugh. Seeing a new to Harlie doc versus a doc that we've known for 17 years are two totally different appointments. I wasn't prepared for a new to us doctor. Her cardiologist emailed me right back and told me why he couldn't be there and who we would be seeing instead. He told me that I would like him. 

While he was right (I liked him fine) it wasn't the same appointment I wanted it to be. There was also another person with him. She was a transition coordinator or something. The doctor said the same thing her other doctor said about what to look for and her escape rhythm, etc. Okay, so when will her pacemaker need to be replaced? No one knows. Since this wasn't a cardiologist with whom I have a good relationship I couldn't say, Cut the crap, doc and tell me! Haha! 

So, then the transition coordinator took over. She basically talked about what it looks like after kids turn 18. It is complicated (no surprise there) because for some of her medical issues, there aren't adult specialists who know congenital issues, so she will have to keep some of her doctors. But, since kids with congenital heart disease are living longer, they have developed a new specialist - an adult cardiologist who specializes in congenital heart disease. I think she told me it takes like 25 years to develop a new specialty. Anyway, I wasn't prepared to have this kind of conversation. I know she's getting older and that's great and all, but change is SO hard for parents who have children with chronic health issues. When we find people we like and trust - and they like and trust us, it is so incredibly hard to lose them - or have to start all over with new people who don't know us at all. So, listening to her and starting to think about all the changes that might happen - well, I started to cry - and I hate to cry. Especially in front of someone I just met! I mean, I have a reputation to keep - I can't be crying at appointments! Then she told me that she makes someone cry once a week - or some kind of lie to make me feel better.  

They also told me that Harlie has to start seeing a Hepatologist (liver doctor). They don't have pediatric hepatologists because kids don't have chronic liver disease, I guess. But, with kids with Fontans, they know that a certain percentage of them can develop liver disease. Here's what I read:

One of the hallmarks of Fontan circulation is permanently elevated central venous pressure, which leads to congestive hepatopathy. Subsequently, liver fibrosis, cirrhosis or hepatocellular carcinoma may occur, all of them constituting an entity called Fontan-associated liver disease (FALD).

Since Harlie is 17, it is time that she started to be watched for this. It sounded like this was the normal process for kids like her, so they would schedule an appointment for us. 

I am especially worried about Harlie, because she is not just a Fontan. She also has lung disease and her terrible airway. For many years she had very high Fontan pressures. She's been on Sildenafil (viagra) for four or so years I think. That has helped and definitely brought her pressures down. But, clearly she's had way more years with higher pressures than with lower pressures. So, what does that mean? Is there a scale of how bad her liver is? Are there signs? I'm told there is no treatment or ability to stop it from happening. I guess if a patient has a good heart, but their liver gets bad, they can get a liver transplant. I really don't know much at all. 

I don't remember how I was notified, but months ago, I was told that Harlie had an appoint with Hepatology on January 30. I wasn't feeling well, but obviously, I had no choice but to go - I mean we've waited three months for this appointment. I wanted Tom to go with us since this was new information and I didn't know what I was going to learn. But, his work schedule didn't allow it. The day before the appointment, I get a call to check in. She said she was checking Harlie in for her GI appointment. Confused, I said, no, this isn't supposed to be a GI appointment, it is supposed to be for hepatology. Also, we already have a GI person, and this was not our GI person. So, I said does she handle hepatology under the GI department? She said, yes, she does. I looked and Gastroenterology, Hepatology and Nutrition are lumped together on VCU's website. So, it kinda made sense that the scheduler said GI appointment. Okay, fine. 

So, the next morning, Harlie and I head on down to VCU. We check in and are shown to the exam room. The nurse gets her vitals and then asks, "Do you have any GI concerns today?" Um, no. So, I said, "This is not supposed to be a GI appointment. This is supposed to be a hepatology appointment." 😑

We all know where this is going. 

The GI nurse practitioner comes in and immediately apologizes. There's been a mistake. Not sure how it happened, but somehow her hepatology referral got changed to a GI referral. She said something about since they don't technically have a hepatology department. Needless to say, I was ticked. Like, for real. I told her that Harlie missed a day of school, I missed a day of work and we've been waiting for this appointment for three months. UGH! Does no one care about my mental health?!?! 

I know it wasn't her fault - and I told her that as well. But, also, we already have a GI person! Ugh. She said that she was sorry and all that stuff. But, then said that she was really glad we were there because our food order for Harlie had expired and she was surprised we were still receiving her food order from the supply company. Apparently some higher being requires that patients be seen every freaking six months to get food. Are you kidding me? She's 17, done growing - so there are no changes to her food order. Absolutely no entity thinks about the special need family when it comes to care. At this point, I will never be able to work full time again (well, get paid for working full time, I mean). 

We left and I was really feeling so crappy. Literally every aspect of caring for her is harder than it should be. How is this sustainable? It isn't. This is another reason why I am feeling so burned out, overwhelmed, alone, etc. 

Plus, I didn't get to learn anything about her liver. Also, I just want to say that any comfort I might have felt that this is the normal process for kids like her - is gone. It doesn't feel like kids see hepatologists around here. This feels like it isn't normal at all. 

The next day I got a message to call and schedule an appointment with a hepatology doctor and they gave me the number. I called and after holding for 15 minutes, they told me they were going to have to call me back. Of course. They called back and told me that they were going to find a place for her but it would take some time. The next appointment was in April. Part of me wanted to say that it isn't urgent. I mean, I don't think it is anyway. But, then I was like, oh well, I guess I'll let them work us in. A few days later, they called me back and gave us an appointment for February 16th. Wow, okay. 

I have no idea what to expect. Will they draw labs? Do any other tests? Or just talk about it then set up tests later? I don't know. Sometimes stuff like this weighs so heavy in my mind. On the good days, when I feel stronger, it doesn't bother me as much. I guess the stronger I am, the deeper I can bury it. If you've ever had to dig a hole in your yard, you might be able to get it. I don't know. Today, as I'm writing this, it feels pretty heavy. Like, my stomach hurts as I'm thinking about it. So, I'm going to take a break. Harlie is home sick again today, so I'm going to go do some stuff with her, then I'll come back and finish. 

A few days later....

Today is Friday, February 9th. It has been a few days since I started this post. Today, I am really struggling. I think I'm going to start a new post, since that will sort of be a new topic. I'm trying really hard to keep my posts a little more focused.

Harlie has missed another three days of school this week. I'm not sure what that's about. But, she has picked up her guitar a lot lately, so that's cool. 

Also, here's a Facebook memory from a few years back. 

Here was the other picture.

I forgot to mention in my TMJ post that she appears to have more facial paralysis since her TMJ surgery in October. Her smile isn't like that anymore. I'm not sure if she will regain it or not. I guess time will tell. Makes me sad right now, though. 

As always, thanks for checking in!

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