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
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