Change in plans...

Warning, this one isn't going to be fun to read. I need to write everything down so I can process it. But, it is going to be medically heavy.

We had to get through the three day weekend, which wasn't easy. I thought for sure I would hear something from her doctor on Tuesday since they probably received the results of her CT scan. Then at 6:30pm he called. He asked if Tom was with me and I said yes. He asked if he was on speaker and I said yes. Clearly this was going to be a lengthy call and he wouldn't want to do it twice. Totally understandable. 

He said they had conference and went over her CT scan, her most recent Echo (done in April), and her heart caths (many over the years, but her most recent one was in 2022, I believe). Here's where we are:

1. Pacemaker Revision: the surgeons feel that because of her heart anatomy (her heart is not normal - it is in a mirror image and has all kinds of craziness to it) they feel that the only way they can access her ventricle is by doing a full sternotomy (where they cut through the sternum to gain access to the heart). So, since they must do a full sternotomy, they might as well replace the atrial lead as well. So, that's the plan as far as her pacemaker goes. 

2. She has leaky valves in/around her heart. I've heard "tricuspid regurgitation" for years. Seemed like it was mild and not a concern. However, she now has some regurgitation with her aortic valve, or it is worse than it was. I don't remember ever discussing this issue. So, it is probably new. 

3. Her Fontan is too small. I really don't know how to explain this to people who have no idea what a Fontan is. There is a post I wrote that gave a basic description of her heart here. But, I really don't expect anyone to read that. So, the simplest way, I think is: 

In a normal heart the right ventricle pumps blood to the lungs to get oxygen. The left ventricle pumps the oxygenated blood to the body. But, she didn't have two ventricles. She had a VSD (ventricular septal defect) that is essentially a hole between the ventricles. Hers was so large, she was really a single ventricle. Basically, she only has one pump that goes to her body. The Fontan is a surgical procedure that re-routes the blood flow so that the blood coming back from the body (which needs oxygen) goes straight into the lungs first, to get oxygen, then goes to the heart to be pumped back to the body. 

Because of this new circulation, blood flow to the lungs depends on pressure and smooth circulation. It is definitely less efficient than normal circulation. Over time, the pressure (which can often be elevated) puts a strain on other organs especially the liver. That is called Fontan Associate Liver Disease (FALD). Unfortunately, Harlie's pressures were elevated for years. And we know she has FALD, and that her liver is congested and appears fibrotic on scans. 

Anyway, her Fontan being too small (think highway reduced to a single lane road) is a big deal and they cannot ignore it. So, since they have to do a full sternotomy, do they need to address her too small Fontan while they are in there? Well, a Fontan revision is a major surgery. So, they want her to have a heart cath first. They want to see if they can help her Fontan by putting in a stent to open it up and they are thinking that can be done during a cath. Her doc said she got a stent several years ago, but I don't remember the specifics. Well, I just searched my blog and wouldn't you know - I found it. Here is the post about it!  Now I remember! Haha! They also want to do an esophageal echo where they do the echo from inside her body versus on top of her chest (which does not give them great images/info). 

Also, if you read the post from December 2017, spoiler alert - she still has exercised induced intolerance. Just today, I asked her if she would like to go for a walk with me (well, she rides in her chair and I walk next to her). She said sure, but she had her pjs on. So I said you need to get dressed. She was like, ugh. So, I asked her if she wanted me to go upstairs to get her clothes and bring them downstairs for her and she said yes. That is not her personality. She is very independent and likes to do things for herself. But, physical exertion - that's a different story. She just can't. 

Anyway, they are trying to move some patients around to get in her next week. Then, based on how the cath goes and if the stent works, they will make a surgical plan. As of right now, they are thinking she would have surgery in mid-June.

Right now, we are hoping that the stent works. If it doesn't, then we might be looking at a Fontan revision and that sounds really ugly and scary to us. 

I just received a call that her heart cath is scheduled for Tuesday, June 2nd. 

Okay, so here's how I'm feeling. Terrified. I never want to speak for Tom, but he's probably terrified, too. Look, we knew all along that her heart was going to become a bigger issue. But, that does not help. Not to mention that this essentially came out of nowhere. We were doing just fine and now I feel like the wheels are coming off! We are not prepared for the what ifs, nor will we ever be.  No prior knowledge makes the future hurt less.

After we spoke to the doctor, Tom called his mom. And I realized that I can't call my mom. There is no one who loves your children like your parents. My mom loved Harlie so much. She was so proud of her. She was so impressed by her. I'm so grateful Harlie has her Grandma and her Grandma loves her like my mom did. But I am sad that she doesn't have her Nana anymore. I'm sad I don't have my mom to gasp and cry and have all kinds of reactions that - at the time - I called dramatic. 

Okay, well that's it for this one. I'm happy I was able to get her outside for a few minutes. Plus, we got to see a cute little family of geese. 

As always, thank you for reading and caring. 

Much love, 

Christy xo

Pacemaker Update

There have been some new developments regarding Harlie's pacemaker. A few days after our appointment in Fredericksburg, I read the clinical note from our appointment. A few key things stood out to me. 

1. She wrote that while her goal is for Harlie to be active and do all the things she would like to do, she could not say that it is safe for her to travel out of state for camp. 

2. In the plan bullet points it said if we do not urgently go for pacemaker revision, then I would like her to be seen again on June 4. 

3. Any fainting should be treated as an emergency with 911 and CPR.

It said other stuff, too, but those three were the ones that made me think. 

Then on Friday evening (like around 6pm) I received a text with a secure message from her doctor that she wanted to call me later that evening. I was like, huh? It is Friday night. That is highly unusual. So, I replied, of course, call me whenever it is convenient for you. Well, she didn't call. Later I looked at Harlie's phone and it appeared that my reply never went through. So, that didn't sit well with me. Obviously, I had to go through the whole weekend wondering. Also, now I'm afraid to leave Harlie alone at all. What if she faints and I'm not there to call 911 and do CPR?!?!?

On Monday morning I was able to speak to her doctor. She was so nice and asked me how Murphy's graduation was and how I was doing (since I cried in her office). I told her that I have a lot of big feelings and they are leaking out sometimes. She was very compassionate. 

Then she told me that the team got together and discussed Harlie's case and decided that her pacemaker needs to be replaced soon. She said that they just needed to get in touch with Harlie's surgeon in Boston to ask him about manipulating her jaw so soon after her jaw surgery. She was thinking she would need to be intubated (with a breathing tube, the way most people are put under for surgery). So, I said, that won't be necessary, since she has a trach, you won't need to manipulate her jaw. She was like, oh, duh! And she apologized. I told her no worries - that's what I'm here for! Haha! I told her I am like her General Contractor. Then she said, no, you are her air traffic controller. I only know where my plane is - you know where all the planes are. Nice! I like it!

Then she said that they are working on a date and would call me back. The next day her other doctor called me. Her surgery is scheduled for Friday, May 29th. So, no camp for her. That is also two major surgeries in just over three weeks! Her wrist is still black and blue from her arterial line. And I know they are going to have to give her another. Anyway, he went over that they basically have two options. I'm going to try and explain it - really just for my records. It really comes in handy later if I write all this stuff down while I can remember it.  

So, if I understand this correctly, there are two leads, each lead has two nodes (shaped like a Y). I think there are two atrial nodes and two ventricular nodes. The ventricular nodes/lead was placed on her heart when she was just four days old. They anticipated her needing them later. 

As she got older, I think/guess her heart developed other issues that required them to place the arial lead/nodes. Or, maybe they didn't have room to place all the nodes on her 4 day old very tiny little heart. The atrial nodes were placed in March of 2012, when they placed the pacemaker generator and officially started the pacemaker. 

So, I believe (if I remember all this correctly) that her ventricular nodes are 19 years old and the atrial nodes are 14 years old. The ventricular nodes are the ones that are failing, thus they MUST be replaced. However, the atrial nodes are still working, thus replacing them becomes more of a choice. If they just replace the ventricular nodes, I believe they can do a half sternotomy. If they replace all the nodes, they have to do a full sternotomy. Clearly, one is more involved than the other. So, do we replace just the ventricular ones - or both? Apparently, replacing both doesn't automatically guarantee that they will last for the next 10 years. They have replaced nodes/leads and they have failed after just one year. So, we don't automatically get that comfort of long lasting nodes/leads. It sounds like either way, whether they replace the atrial ones or not, they could still fail at some point. 

I asked him if her heart is adhered to her chest wall by scar tissue, does that factor in to any of their considerations. He said he could not find the note that actually confirms that is the case. He asked me when we were told that. I told him I couldn't remember, but I would check to see if I wrote it down somewhere. haha. So, I searched my blog and found it - March 12, 2012.

Anyway, the next morning he called me to let me know that he ordered a CT scan and that we could do it at VCU to save us a trip to DC. While I had him I asked him if he would mind calling Tom and explaining what he explained to me the day before. When I explained it to Tom he had questions, and I did not know the answers. He said he didn't mind. So, later that day he called Tom and went over everything. By then, he said he did find a note in her chart about the adhesion to her chest wall. Great, so I'm not crazy. I believe he told Tom that if that is the case, it complicates matters a bit. Maybe things can change? I don't know. So, we went yesterday (Thursday) and had the CT scan done. Her doctor told Tom that they hope to have the results soon so they can make a plan. They are supposed to call us early next week. 

As of now, she has a pre-op appointment at 9am on Thursday in DC and then surgery Friday am. We are working on getting a room at the Ronald McDonald House there, but I don't think they can confirm anything until next week. 

What I do know is that she will not return to school this year. It is just not worth the risk - of her getting sick or her just wearing herself down more than absolutely necessary. On Wednesday, she didn't leave her room. When she has the energy, she will come downstairs. She clearly didn't have the energy. Then yesterday, I made her leave because she had the CT scan. We'll see what she does today. So far, she is still in her room. This is two major surgeries in just over three weeks - and that is a lot for her. 

Regarding camp - clearly she cannot go. When I found out, I emailed them and asked if they would please consider letting her return next year for her last year and I couldn't believe it, but they said yes! We didn't want to tell Harlie anything until we had more information (like a date and an answer to the camp question). So, when we had those, we told her. She took it well. She asked where and we said DC. She said that they called her cell phone that afternoon but she didn't answer it. She said, "It wasn't any of my business, so I didn't answer." We had a little chuckle because it actually is her business. Anyway, I am pretty sure she doesn't understand that she will have some version of a sternotomy. I'm guessing that is a coping mechanism - keeping herself in the dark when she can. 

Back to yesterday (Thursday), I've been trying to get her scheduled for a haircut, but it really hasn't been a high priority and we just haven't had time lately. I did finally schedule it for June something - but now with her surgery next Friday, I really wanted it cut before. Her hair can be a challenge in the hospital. There's just so much of it! After her TMJ surgery, it was full of blood. I have washed her hair so many times since, but I feel like I can still smell it! Anyway, I thought a cut would make life easier post-op. So, on a whim I asked my person and she happened to have a cancellation at 4:30 yesterday. Wow - that is perfect! Her CT scan was at 3pm, so as soon as that was over I just stopped at the salon on our way home. Wow. Things rarely work like that! 

So funny, as I was walking up I saw Melissa (she cut my hair for YEARS before she made a career switch). Then I walked in and Donna was there getting Alex's hair cut! How crazy is that? And then Patti was there getting her hair done. How crazy is that?! It was such a fun way to end the day - seeing some of my favorite people! 

Well, last thing - we got Murphy all moved in. Well, there are still a few things here he might still get. But, for the most part, he's settled into his apartment. I have been adjusting to the little things - not leaving a light on for him (since he would get home so late when he closed), not knowing that he got home safely after work, and of course, not seeing him everyday. I know it will get easier, but I still miss him anyway. 

Also, I feel the need to just say to all my loved ones, that I'm pretty focused on us surviving right now. Things are little overwhelming at the moment. So, I'm not asking how you are or what's going on in your lives and I'm sorry about that. I care - I just can't show it like I normally would. One day, life will calm down again and I hope to get back to being a regular person. For now, I do not feel like a regular person. My worries are big right now and they take up so much space. Thank you for understanding. 

Much love,

Christy xo

Home and life moves on...

Hi. Well, we made it home on Saturday, May 9th (my Mom's birthday). It was a long day. We took an Uber to the airport. When we landed at Reagan, we had to take the shuttle to the rental car place. Then we had to wait there for a while. Then we finally got the car and drove home. I think we got home around 7:30pm. I think it, I say it - every time - but I cannot imagine how hard all that travel is on her after all she's been through. 

The next day was Mother's Day. It was a beautiful day. But, we were just too tired to enjoy it. We did sit outside for a while, which was nice. Harlie didn't come downstairs at all. So, as far as doing something "special" well, that was just out of the question. We needed to catch our breath. To be honest, it was a difficult day. Not only did we just get through a grueling week, with another grueling week of recovery ahead, it was my first Mother's Day without my Mom. It was weird. With all my feelings, I just didn't have it in me to do much wishing other moms a Happy Mother's Day. I stayed off my phone and just rested as much as I could. We had dinner with the boys, Tom made crab cakes, which I requested. The boys gave me nice cards and wonderful gifts. They are so thoughtful and sweet. 

Monday was Murphy's 22nd birthday. He didn't have to work at all, which was nice because that meant I got to spend almost the entire day with him. He asked me to help him work on going through stuff in his room and packing. I also wanted to get him new bedding, so we went to Target and he picked out all new stuff for his bed. He tells me he is going to make his bed every day when he gets into his apartment. Haha! We'll see. We gave him stuff for his apartment, like a set of pots and pans and a cast iron pan that he wanted. He bought a kitchen island off Facebook marketplace and Tom fixed it all up for him and painted it. He's in pretty good shape, really.

Harlie's Electrophysiologist (EP/pacemaker doc) moved us to 9am on Tuesday in Fredricksburg so we could get out of there in time to go to Murphy's graduation. 

As far as how it went... it went as most EP appointments go - they essentially say the same thing - the leads are tricky, but they still work. She's stable for now. Honestly, they do an awful lot of fiddling around with her device for me to believe that she's "stable". From my perspective, it seems like they are putting in a lot of effort to turn around and say she's stable. The EP put a Holter Monitor on her for the next 24-48 hours so they can see if they can get more data. She said that she really can't tell me if she'll need a replacement in the next six months or in the next two years. They just have to watch her closely. It's kind of frustrating. No, I don't want to rush into any surgery - especially right now. But, at the same time, I don't want us to end up forced into a surgery with no time to prepare. Or worse - have a catastrophic failure that ends horribly. Or, everything will be fine for the next two years. Seriously? How are parents supposed to live like this?!?!?

I told her that Harlie has camp in Indiana next month. Are we risking too much by sending her? I don't want to live in fear and have her miss out on valuable experiences (this is the last year she can go to camp since she will be 20 in September). But, I also don't want to be negligent and dangerous. We have an anniversary trip to Spain planned for the end of August/beginning of September. Should we not go? What if we go and something happens? She said she wants us seen by EP again on June 4th (her EP doc comes to Richmond on the first Thursday of every month). We'll have that conversation then. Hopefully they will have the results of the Holter monitor by then. As far as our anniversary trip, she said don't cancel anything yet. 

I just hate living like this. When I started to tell her doctor about camp and our trip, I started to cry. I HATE it when I do that. Amazingly, there's only been a handful of appointments when I've cried. On one hand, I feel weak/out of control when I do that. But if you think about how many more appointments when I HAVEN'T cried - I'm like, hey, look at you! Haha! 

The bottom line is that life is kicking our asses right now. Normally I can keep myself somewhat contained. But, I just don't have the energy required to keep all my feelings contained, so my feelings are spilling out all over the place. This makes me want to go home and not leave and not see anyone. 

Anyway, we left there and headed back to Richmond. It was a quick turnaround since Murphy had to be down at the Siegel Center by 1:15pm. Caylee came over to hang with Harlie while we were gone. Of course, Harlie wasn't feeling up to going. She missed Murphy's high school graduation because she was in the hospital. Now she missed this one. Ugh. 

There were about 800 students participating in the graduation ceremony. I assumed the students were in alphabetical order, so when the students first entered and filed into their seats, I wasn't really looking for him. I just figured he would be in the middle of pack. But, something made me look up at the jumbo tron thing and as soon as I did, there he was! It was like intuition. He was in the second row, and we watched him walk in. It was like he could feel us because he looked right up at us and waved. That is so crazy because the place was packed and we had no idea what the set up was or where we would be. I thought there was no way he was going to see us. Crazy! It's like he could feel our love, haha!

I mean, just look at how cute he is!! 😍 Haha! 

I forgot to mention that on Monday, I started to feel sick - like a cold sick. When we sat down, I realized I forgot to grab some tissues. So, Cooper went to the restroom and grabbed me a handful of toilet paper. Classy. Anyway, after seeing Murphy's cute face, I just started to cry. Ugh - there goes my feelings spilling out all over the place again. I mean, I wanted to excuse myself and go sob somewhere private. But, clearly that wasn't an option. I had to get myself together. 

The President of the community college spoke and I really liked what she said. She said she gets asked about the type of student that attends the community college. She said that they are extraordinary. To prove her point, she asked the graduates to stand if they are the first to earn a degree in their family. Then she asked the graduates to stand if they are a parent or the primary caregiver. Then she asked the graduates to stand if they had a full-time job while they were in school. Then she asked the graduates to stand if they were getting their Associates Degree before they graduated high school (there is a program where you can earn your associates in high school). By then it looked like every graduate was standing. It was pretty cool. She also said that the youngest graduate is 17 and the oldest is 72. Pretty awesome. 

Ahh, you gotta love that sibling support. Cooper was just "resting his eyes". 

He chose to go eat at Stella's to celebrate (that is the restaurant where he works). I just love going there because I get to hear so many good things about Murphy. So many people come up to us and tell us how much they love him. It fills my heart and I really needed it right then. 

A candle for his birthday...

Just because I can... here is an old post where I shared some good, young pics of Murphy on his 7th birthday. 

Later that night, I took a down turn and really started to feel bad. I had a terrible night and woke up feeling even worse. This has happened before after a hospitalization. I just get so run down. It is my body's way of telling me to chill out and recover. As if I have any control over that. Trust me, I want to chill out. I love to chill out. I wish I could chill out.

Speaking of not being able to chill out... I received a reminder for her next bronch (a follow up from her last bronch in February). It is scheduled for May 27. I just can't do it. I'm going to have to reschedule. But for when? Camp is June 14. I don't know how or where I'm going to fit it in (maybe after camp if the doc thinks it can wait that long). I just can't do it so soon. She has five doctor's appointments on her calendar before June 12th. That is ridiculous. 

Today is Wednesday and I convinced Harlie to come sit outside with me. 

I don't know when she will return to school. Definitely not this week. 

The next hurdle we have is to help Murphy move into his apartment on Friday. So, we have two more nights of him sleeping in his bed in our house. I know, I know, this is great. It is! I have full confidence in his ability to navigate life. I am so proud of him. But, oh, I am going to miss him so much! Feelings aren't either/or. You can have lots of feelings at the same time - like I am both happy and sad about him moving out. Like I said, we are getting our asses kicked right now. I wish so many life changing things didn't happen in such a short time, but sometimes that is just the way it is. 

Well, I didn't get this finished and out on Wednesday. So, now it is Thursday. Harlie has not come downstairs today. But, I have been able to remove the dressing and not put a new one on. I'm just leaving it exposed to the air now. Tomorrow we will remove the sutures. Hopefully that goes well. I also removed her Holter Monitor and put that in the mailbox to be returned. 

That's it for now. Thanks for reading!

Much love,

Christy xo

Post-Op Days 3 and 4

 Hi. It is now Saturday morning (Day 4) and I'm trying to recall what happened yesterday. But, first, while we were out for lunch yesterday, we stopped in a cute little bookstore. I saw this journal. I should've bought it. 

Haha! 

Anyway, I guess I can start with Thursday night. I was feeling pretty worn out and sad (as you might have guessed from my blog post) so it wasn't exactly easy to perk up and enjoy a baseball game. This is a good example of when I say that having fun is hard. Not everybody gets what I mean.  

The seats were great. We were like three rows behind the visitor dugout on the 3rd base line. While we do not watch a lot of baseball, we can certainly appreciate the game - especially here in Boston. Fenway is located right in the city. They close off the street in front of it and that street becomes part of the park. It is pretty cool. Funny, a few weeks ago I came across a video about how/why they play Neil Diamond's Sweet Caroline during the games. In 1997, one of the employees had a baby girl, named Caroline. The music director played Sweet Caroline as a gesture to him and his family. It stuck. They now play it in the middle of the 8th inning. So, we stayed through the 9th inning and then we left. The Red Sox lost. 

Back to Friday... I got her cleaned up, washed her hair and did her wound care on her neck incision. I think she felt a little better after all that. 

The team rounded and we discussed our travel plans. Our plan was to discharge her Saturday morning and fly to DC on the 3pm flight. So, Tom purchased the tickets, rented the car in DC, and told The Bon that we would be checking out on Saturday. 

The only two things we had to check off the list was to make sure she was off oxygen during the day (check) and her pacemaker had to be interrogated one last time before we left. So, the doc came to do that. Then she called me. She asked me for Harlie's home pacemaker doctor's info (her doc at Children's National in DC). So, I told her and then I sent a message to him to let him know that she was trying to get in touch with him. This was probably around 4pm. On a Friday. 

At 5:30pm, I received a message back from DC. The two doctors connected. The new "plan" is that she will need to be seen ASAP. They gave me an appointment for 11:30am on Tuesday in Fredericksburg. Murphy's graduation is Tuesday at 2pm in Richmond. Fredericksburg is one hour away from Richmond. 

As if that wasn't bad enough - they added that they need to do a chest x-ray and another pacemaker check to make sure things are stable enough for Harlie to travel home. If things are not stable enough, they will likely plan to do her pacemaker revision up there (Boston). 

I think I stopped breathing for a minute after I read that. 

A pacemaker revision means an entire replacement, which means the leads connected to her heart and the battery generator. The leads were attached to her heart when she was just four days old. So, those leads are now almost 20 years old! In the past, they have talked to me about the battery dying (which is what I shared a few days ago) and the leads failing. Regarding the battery - we have some notice about that, so that's not as scary. But, the leads are another story. If they fail, her heart stops beating. And her doctor here mentioned A node failure. I don't know exactly what that means. 

Gee, I wonder why I'm a catastrophic thinker?

Anyway, we left the hospital around 7:30pm to get dinner and head back to our room. Ugh. We were not ready to have this pacemaker replacement issue in our face. Especially today - while we are 500 miles from home.  

We woke up early and went on ahead and packed up all our stuff. We wanted to think positively and thought if we can't go home today, we will just unpack later. We will also hope that we can keep this room. 

Plastics came by one last time and checked her incisions. All fine there. 

They came and did the xray (darn it, forgot to take a pic of it). Here's an older pic, just so you can see the leads and the battery. 

Then the Electrophysiologist came by (EP/pacemaker doc). He explained everything. He said that the leads can break and stop immediately or they can give signs that it is happening slowly (which I think is what is happening in her case). He said "rarely" do they just break. I love how some docs think that is comforting. Regardless, he said that we are good to take her home, but she needs to be seen ASAP.  Whew! 

Hopefully, I will hear back on Monday that they can see her earlier than 11:30 on Tuesday. Clearly, there is no way I could make it back in time for Murphy's graduation with an 11:30 appt. 

We left and went back to the Bon to collect our stuff and give her a breathing treatment.

We are now at the airport, through security and waiting for our flight. Hard to believe we still have to get to the next airport, collect our luggage, get the rental car, then drive home. Ugh. 

Thank you for all the love! 

Christy xo

Post Op Day 2 - Left TMJ Placement (take two)

Hi. The past few days have been okay, I guess. Well, to be honest, Harlie is pretty miserable. We aren't exactly happy, either. 

Surgery Day/Post-Op Day 1

Medically speaking, her blood pressures were pretty low for a day or so, so they gave her lots of fluids through her IV. This is tricky with her Fontan circulation (her heart and lungs don't do well dehydrated, or with too much fluid). So, it is a balancing act for sure. She pretty much slept for most of the day and was still asleep when we left for the rest of the night. She spent the first night in the CICU. Before I went to sleep I called her nurse to check on her. She told me that Harlie told her she had to go potty and some other things she needed, but I can't remember what they were now. Oh, she said that Harlie asked where Mom and Dad were and she told her that we went to go eat dinner. Then she told me that she got upset. Ugh, break my heart. As I was listening to her nurse tell me all that I was a little surprised - there is no way Harlie is talking clearly after that jaw surgery. So, I asked her how Harlie communicated all that to her. She said that she typed it into her phone so her nurse could read it. Wow! I am so impressed. We have not communicated like that at all. In fact, she was signing to us (which we are way more rusty than she is since we haven't used sign language to communicate to her in YEARS). I don't know how she remembers so much. She really is so smart and resourceful! 

In the CICU, they have quiet time during shift change and do not want parents coming or going between 6:30 - 7:30. So, we arrived just after 7:30am on Wednesday morning. 

Harlie was awake and the first thing she signed to me was, "I am mad at you." Darn it. I know, I'm her mom, and I'm the one that gets it the worst. I guess she has to put her anger somewhere - and I'm a safe place to put it. She knows I'm going to love her anyway. She typed in her phone "I can't talk" and I told her that we knew, but that she would be able to talk soon. 

They rounded on her shortly after that. While the doc was giving the run down on her, I heard him say, "she has a 4.5 bivona, cuffed trach" and he continued on with her laundry list of all her devices and major health issues/surgeries. It is "funny" how after I don't hear it for a while and then hear it all at once it really strikes me as unbelievable. I mean, seriously, how the fuck does our little girl have this kind of medical history? It is unreal. 

Anyway, after they were done doing their thing, I said, "Did you say she has a 4.5 - CUFFED trach in right now"? He said yes. Well, no wonder she can't talk!!! So, I told him that she is supposed to have a 5.0 ped Shiley - UNcuffed trach. The cuff is a balloon that they fill with water to fill in the gap between the trach cannula (the part of the trach tube that goes into her trachea) and her trachea. Typically, they put a cuffed trach in when she is on a ventilator so there are no leaks of air around the cannula and they can better control pressures while she's under anesthesia. If there is no air leaking around the trach, air cannot pass through the vocal cords, thus you cannot make any sound.

So, they were like, oh, well, yeah, let's get that changed then! I wanted to say, you're welcome, Harlie, but didn't. She would not get it.  

Right after that, plastics came by to change her dressing. This is when things took a turn - in my emotional well being, I mean. Ugh. I have blocked so much out. Having to hold her and try to comfort her/calm her down during dressing changes is so hard. Plus, her surgeon said that in the past he would put dissolvable stitches under the skin and glue on top of the skin. But, he couldn't do that this time. Her skin is too scarred and tough now, so he had to use regular sutures that do not dissolve and no glue. This also means we will have to remove her sutures after we are home. She has two incisions - one in front of her left ear and another longer one in her neck, just under her jaw line. That second one is under her trach tie - which makes caring for it way more difficult and probably more painful for Harlie. It also means that during dressing changes, her trach is not secure, which just makes things more tricky. Anyway, that incision is pretty gnarly and in the past, I've been "okay" with her incisions. But, for some reason, this one got to me.  

I changed her trach after they put a new dressing on and I do think she was more comfortable with her regular trach in place. Plastics told me that they had to stitch her trach in place during surgery (well, she couldn't have her trach ties in the way of the incision of course) but that they took the stitches out. But, the wound from where the stitches were is another area of discomfort that requires some post-op care. Her skin is just really unforgiving at this point. It has been through way too much. 

During all that care - she desatted pretty bad (she turned visibly blue). We had to turn the oxygen up and hold it in front of her. There was four to five of us all busy doing something (holding her hands, holding her trach, doing the dressing, holding the oxygen and getting supplies ready). 

Desatting like that got me wondering if she was a little fluid overloaded. She did look puffy to me (not just her face, but her arms and legs, too). I tried to tell myself it was too early to worry about that, but, you know how that goes. Obviously, I don't want her lungs to get wet (then develop pneumonia, which has happened many times). We have to be home before Tuesday (for Murphy's graduation). Even though no one is talking discharge yet - I was thinking about what will be involved in getting her home. We have an oxygen concentrator - but if she ends up needing supplemental oxygen all the time (not just during the flight) it won't be enough. So, we would have to have the hospital help us get a better concentrator. We've started looking at flights, but they leave Boston at 6am (no way we can make that happen) or 9pm. I mean, what the hell? And they are so expensive! Tom did find a flight into DC, that is at a more reasonable time (2:30pm), but we would have to rent a car and drive from there. Or, of course, we might have to rent a car from here and drive home, which we really would rather not do. Caregiving post-op while traveling is a nightmare. 

We are really feeling our ages right about now. It is getting harder and harder on us to keep up this pace. We have been doing this for almost 20 years now! How is that even possible? We were in our early 30s when we started this life! We are definitely feeling the toll. It doesn't help that we are sitting in a hospital room all day. Being present and focused on Harlie's care while in the hospital takes ALL of my focus. My world gets so small and it feels like there is nothing outside of this room. I feel terrible for the boys, who I realized I had not spoken to since Sunday night. Tom has been talking to them, I just haven't. So, while at dinner later, we called Cooper. He couldn't chat because he was at work. So was Murphy. But, they said that all is well at home, so that's good.

Anyway, the CICU team said she was ready to go to the step down unit so we waited all day for that to happen.

The nurse we had in the step down unit was a nurse we've had before (and liked) and we remembered each other. A cardiology fellow came in to introduce himself and ask me a few questions about Harlie. I love it when people are curious and ask me questions. I have been surprised at the lack of curiosity of people, really. I mean, maybe people are afraid they are going to offend me or something - but how can you learn if you don't ask questions? And by the way, what mom doesn't want to talk about their child? Anyway, my cliff note interpretation is that he was confused at our many locations of medical care. So, I explained how and why that happened and he was like, oh, that makes sense now. And I felt seen and heard and respected all at the same time. So, good job to him! He also told us that her heart is so interesting and he drew it up for some students earlier. 

We stayed until the night nurse got here and we went over everything with her. Harlie still can't talk (another sign that she could have swelling everywhere, including her airway), so she's been using her phone to type what she wants to say. Then we left and walked back towards our room. We went to a restaurant next door to the Bon (where our room is) and had dinner and wine. We shared an appetizer and one entree. 

I woke up at 12:30am really not feeling good. Like I was afraid I was going to be sick. I asked Tom if he felt sick, since we ate the same thing, but he said he felt fine. I was really uncomfortable, like hot, cold, didn't want to lay down, didn't want to sit up. I don't know if this sounds crazy, but looking back, I think I was dreaming/processing the day and that it made me physically ill. I kept seeing her incision in my mind and it was making me hurt - like my stomach just felt so upset. There are a couple of tricks I've learned to help me not worry when I wake up in the middle of the night - but it was very hard to stay focused on them, like the worst it has been, probably. It was so upsetting that I thought, what if something has happened at the hospital and I am feeling it? Then I told myself to stop - they would've called me if anything happened. I eventually fell back to sleep. But, needless to say, it was not a good night. 

We woke up early and walked to the hospital. I always call the nurse early, before she leaves from her night shift, so I can hear how Harlie's night was. She said that she went to sleep around 9pm and slept soundly all night long. So, that's great! She was still sleeping when we arrived. 

Post-Op Day 2

Today has been okay. Her swelling is definitely worse, no surprise there. But, her lungs sound clear and they have been able to wean her oxygen down some, so that's a good sign. We got her up and changed her clothes, I brushed her hair and re-braided it, she took a walk around the unit and now she is in a chair instead of the bed. 

Plastics came by and said he could remove the dressing in front of her ear. But, she kept swatting him away. He told me I could do it any time today. So, after he left Tom and I talked to her about it. She did not want us to do it, either, but we got it done. It looks good. I am not going to do anything with the neck incision today. 

They just gave her some Lasix (a diuretic) to help her get rid of some of those fluids. She did get up and go to the bathroom and during that little walk/effort/time off the oxygen, her sats went to 74 (she's normally in the mid 80s) so that's not too horrible. But, I'd certainly feel better if she didn't dip as low when we leave. The case manager is working on getting us a better oxygen concentrator, but that is more complicated than I realized. Especially on a Thursday afternoon. As of now, we are looking towards a Saturday discharge (which would mean we would need the concentrator tomorrow). 

On Saturday, there is a 2:30pm flight to DC that we could take. That is way better than 6am or 9pm flights to Richmond. Although, we have to rent a car and drive home from DC, but still I think that will be easier on Harlie than getting home well after 11pm. 

During her surgery, they gave her an arterial line. They took it out when she left the CICU. Today that wrist is bruised (which isn't surprising since she bruises so easily) and looks swollen. So, they are keeping an eye on that. 

She hasn't wanted to eat at all so far. Drinking Pediasure is not an option right now. So, I'm tubing it. But, she will only let me give her like two ounces at a time. After I asked her if she was feeling hungry, she typed this:

How freaking cute is her Google search? Clearly, her belly isn't feeling great, so I'm just going to stick with smaller boluses until she feels better. 

She really seems worn out, mentally. She asked me today why she is the only one in our family who isn't normal. She said she wants to eat food like us and play sports. It just kills me. After all these years - 19 of them - it is not any easier and we are not less sad about the cards she was dealt or the losses she experiences. Tom saw this the other day and showed it to me:

The biggest illusion you live with is that the future can somehow bring you peace. But peace is not in the future - its in becoming comfortable with the chaos of the present. 

The future will not bring us what we want. There will be no cure. There will never be freedom from her medical challenges. She will never chew a cookie or a piece of cake or eat a cheeseburger. She will never swim or play a sport. How do you comfort your child who feels sad about all that? That is big stuff! I just told her that I was sorry. That I don't know why. All we can do is make the best out of what we were given. But, it is okay to feel sad about it. So, we can feel sad about it together. I remember when I first started blogging, shortly after she was born. During that time I was trying to be positive because well, maybe I had to be for myself - but I also felt like my Mom needed to hear something positive, that the rest of my family needed to hear it and my friends needed to hear it. I mean, who wants to hear doom and gloom all day? No one. I mean, I certainly don't want us to live doom and gloom, either. But, the reality is that I don't have the hope I used to have. So, I'm just being more honest about it. 

As I said earlier, it is hard to think of our normal life when we are in this hospital room. Once we get her home and she recovers from this surgery, she will perk up. We all will. The dogs will help. They always cheer us up. And our regular life will resume and she will be better. And we will focus on being comfortable in the chaos of the present. 

At lunch today Tom realized the Red Sox are playing at home tonight (we are literally staying across the street from Fenway Park). On a whim, he asked Family Services if they had any tickets and guess what, they had two tickets to give us. Right place, right time I guess. So hopefully, if all goes well, we will head over there tonight.  

I'm going to wrap this up for now. Hopefully, tomorrow will be a better day and we can purchase those plane tickets. 

Thank you for the love!

Christy xo

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