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

Spring 2026 Update

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

In my last post I listed some upcoming appointments. 

Here are some updates:

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

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

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

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

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

In other news:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What's ahead:

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

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

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

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

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

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

Christy xo