Mylin’s Angry Pancreas

06/10/2026

I mean, if you grew up in the pop punk early 2000’s scene that’s what the band Hawthorne Heights taught us at least lol. Hopefully it’s also for miracles and healing.

We are currently preparing for an Ohio summer. Mylin was okayed for surgery at the end of this month. So the entire family is packing up to head to the far East side of the Midwest for three weeks together. We are tightknit crew and the twins have already been really upset and stressed out about everything that is to come. I can’t imagine not being with them during this time . After those three weeks, the twins, and I will fly home so that they can begin high school sports training and settling in for two weeks before starting school again.

Since Daniel works from home, he will be staying with Mylin the majority of the time. While, this is so amazing, that Daniel has the ability to work and stay at the hospital , any of you that are moms can only imagine how hard this will be. I am going to have to fly back-and-forth. I have a business to run, and at a time where we are definitely not short on the output of money, I need to ensure that I keep a paycheck. it feels horrible though, to know that you’re going to be leaving your baby in the hospital and even possibly the ICU. This isn’t my first time being at work while Mylin’s in the hospital, but this time will be different. Mylin will have just had a massive surgery and be 3/4 the way across the country! Imagine any mom guilt you’ve ever had and it’s WAY worse than that. Plus you just wanna be there, it’s literally your job. What you were built to do. Protect and care for that baby. I am going to attempt not to be a mess, but damn.

Anyways, two weeks from today, we will be flying out to Ohio. We weren’t originally sure about the amount of appointments we would have for preop, and we wanted to ensure that Mylin had the ability to adjust to the East Coast time and not be completely exhausted before such an intense surgery. Especially because flying does tend to wreak havoc on My’s little body.

The actual surgery date is June 30, 2026. It will be an all day affair. There are a few pre-op appointments prior to that.

The Ronald McDonald House only hosts 4 family members at a time, so we will have to split up the first few days. Then once Mylin is admitted, we will all share a room at RMHC (Ronald McDonald House Charities). I had considered renting an Airbnb, but as you can imagine, car rental, hotel fees, flights back-and-forth are already adding up pretty quickly. So we’ll just be real cozy for a bit.

Mylin is really excited about the surgery. That blows my mind. Especially now that we know that Mylin is more of an extreme case and therefore the surgery will also be. I just can’t imagine what their pain level must look like to have a surgery like this be exciting and something that you would sign off on in a minute. That’s what they’ve always said, since I told them about the surgery. Even knowing the intensity and everything that comes with it. They’ve always said they would sign off on getting it in the blink of an eye without a second thought.

We just got back from our last Ohio trip not even 72 hours ago and it has been nonstop! I have had so many things to plan and put in order. I am so thankful for all of our friends who are coming together to care for our two pups while we are gone, and are so willing to lend a hand. I don’t know what I would do without them. I have been busy rescheduling clients that are on my books during the duration of when we will be in Ohio. Many of which I am trying to squeeze in, in the two weeks before we leave. Which means I am working lots of overtime hours. (I am already so exhausted from not sleeping in Ohio and then doing the back and forth between the West Coast and East Coast time differences.) not to mention most of yesterday as I’m trying to work. I’m getting phone calls almost hourly confirming all of the appointments we have coming up. I am also a stylist that pre-books the majority of my clientele, so I had to map out what the next 6 to 8 weeks look like. Deciding when I would fly back to Ohio once I came home with the twins, when I would come home., when I would fly back out and then come home again. That took a lot of looking at airline points and other credit card points to see what I can pull together to try to save some money on that front. Also took logistics of figuring out what that would look like for my work schedule during the times that I’m home. Trying to juggle that and also spend some time with the twins while I’m home is going to be absolutely wild. I scheduled a rental car for eight weeks. I want us to have the ability to pick up whatever we might need, get each other at the airport, and while the twins are in town, I wanna try to take them to you just a few things. I know that they are going to be needing a little extra love too. I had to reach out to the girls instructors, the guy that mows my lawn to let him know my dogs will be out and about beyond my control, and honestly, I can’t even remember the amount of people I’ve had to reach out to to prepare to be gone. My brain is nonstop spinning. I’m constantly trying to think of things that I’ve missed, or things that are on my to-do list. We had to reach out to one of Mylin‘s doctors here to let them know we’re gonna run out of medicine but it’s a medicine we can’t run out of while we are out there so we’re trying to preemptively expedite a prescription so that we’ll have more than enough to take care of Mylin while they’re not living in California.

Then there’s all the other fun stuff because why wouldn’t there be. Insurance is always the one thing that sets me overboard when we’re going through tough times like this. They don’t want to pay the hospital to use their pharmacy because it’s out of network so even once we’re in Ohio and Mylin‘s being prescribed things they want us to leave the hospital and go get Mylin‘s prescriptions and then bring them back to the hospital. So annoying! 

I’m having trouble sleeping just thinking not only about the surgery, but about all the things I need to get done before we leave. Oh my gosh, I can’t imagine getting this house picked up for other people to come in it. Life has just been so insane that that’s one of the things that has fallen behind. We have three teenagers and two dogs and the life is hard right now. Then as I get more tired, I start to focus on the intensity of the surgery and really think about that and that doesn’t go anywhere good.

This is such a season of mixed emotions. This surgery is the only possibility that Mylin could live a life without life altering pain. The type of pain that doesn’t allow you to actually just be. The type of pain that holds you back from doing the things you love, seeing the people you love, and makes you question if it’s all worth it. This is why we were hoping for the surgery. Then there’s not only the intensity of the surgery itself, but what comes after. Mylin will come home likely with a feeding tube. We’re going to have to work them up to being able to eat solid food again. Mylin will come home extremely diabetic. They will be on an insulin pump and have a continuous glucose monitor. They will also be asplenic most likely. Which will make them extremely susceptible to illness and they will be highly autoimmune. For the first year if Mylin gets a fever over 100.05 we have to rush them to be hospitalized.

That’s another part of this. There’s no doubt about the fact that even after the surgery, there’s a long hard road ahead. 

As of now they’re saying it’ll be at least two weeks in the ICU followed by at least 4 to 6 weeks in the hospital and then after that, Mylin will have to move to the Ronald McDonald house and have daily appointments.

Before we fly out for the appointments, Daniel and I (and they encourage anyone else who will be a big part of Mylin’s life to join as well) have to take part in a four part series of three hour classes for diabetes. This isn’t a do it at your own pace situation. This is you are online with an instructor and each class takes that long. Daniel about stroked out yesterday, trying to figure out how that was going to work with Nationwide Children’s Hospital being on East Coast time and me currently working overtime hours. He called me and was like I can’t believe what you’re doing at work right now! This is just our reality. 

Once Mylin does get to come home, Ohio will still be a big part of our life. For the first year, we will have to go back once a month. Then if everything goes well, we’ll go for a period of time every three months. Then it goes up to every six months and eventually once a year.

Even with all of that, I’m someone that still believes in miracles. Mylin is gonna come out of this better than ever. They are going to get to be a kid again. They have strength beyond what anyone can imagine. I know great things are coming. 🩷