the SCARIEST days we've ever lived through

Added: 2026-05-30

[00:00:00]It's been the most overwhelming, scary, chaotic weeks of our life. And we're both pretty exhausted.

[00:00:10]>> The week started off with us getting to Arizona and go go go back to back appointments. As soon as we landed, getting to our Airbnb, it being moldy and having to try to get out of the Airbnb and relocate to a new Airbnb, knowing that Kyle had surgery bright and early in the morning. And we didn't even get into a new Airbnb till 7:00 at night and then had to wake up early for him to have surgery. And so, it's just a chaotic start to begin with. And I think that set the tone for what was about to happen. We get to the hospital at 5:30 in the morning. We're going to check in.

[00:00:47]And as we're waiting in the line for them to take him back to do all like the preop stuff with the nurse team, Kyle just started leaning and I thought he was having a seizure and he started falling into the wall and I yelled for help. The nurses came, put him in a wheelchair. We still don't know know why that happened. um he just lost balance in his right side and so it was just like a jarring thing. There was a little bit of like is he going to be able to have surgery? What's going to happen?

[00:01:19]But they did go ahead with surgery and they cleared him all his labs, everything like vital signs were normal.

[00:01:26]So they proceeded with surgery and the surgery went as planned. They were able to rotate the skin over to cover the spot where his skull was exposed and then they were able to remove the skin from his thigh to put in place of where they took that skin. Everything went as good as they could have expected. They didn't need to go into his brain and remove anything. It was just the reconstruction. So they did have to take out some of his bone putty because it had been compromised because it was exposed to the air. So they replaced that with titanium mesh. Surgery went great. Kyle got moved up to the floor.

[00:02:07]The plan was he'd be there for one to two nights and we'd go home. And then that night while he was in his hospital bed, Kyle looked at me and his hand was doing this and he began having a seizure.

[00:02:20]>> And I was freaking out because he had just put a whole piece of pineapple in his mouth. And I'm call the nurse. They come in and I'm explaining that I'm worried he's going to choke. And Kyle is conscious enough and blew us all away and managed to spit the pineapple out of his mouth while he was seizing. And then they just monitored him and were like, you know, that can happen after surgery because, you know, your body, your brain went through a lot of stuff. So they weren't worried that he had the seizure.

[00:02:52]You okay? Yeah.

[00:02:54]>> What's going on?

[00:02:55]>> I'm just like looking at stuff.

[00:02:58]>> You're overwhelmed.

[00:02:59]>> Yeah.

[00:03:01]>> Do you want me to do this by myself?

[00:03:03]>> No.

[00:03:03]>> Okay. And so he had the seizure. They weren't concerned. He didn't have a seizure again. And then that was So he had the seizure on Wednesday. He had he had his surgery on Wednesday, which had the seizure then. And then come Friday morning, they were like, "We think you're good to go and you'll be able to leave the hospital today." I also failed to mention in that time period, we noticed that Kyle's right side was just gotten a lot worse. And so when physical therapy came in, he was not able to walk on his own. So now Kyle is using a walker, which is a new hard kind of pill to swallow because it's such a big change from him being able to move around on his own. So we left on Friday at like 4:00 p.m. with our walker and came back to our Airbnb and we're ready to just like decompress for the next week and a half here before we have to go back to Colorado. And then at 4:00 a.m. Kyle got up to go to the bathroom. And I thought he was fine.

[00:04:12]Like once we got home, he was able to like get around without my assistance with the walker. And I was sleeping, but I not noticed him getting up and I figured he'll be okay. I fell back asleep and I wake up to this incredibly loud bang and I immediately jumped out of bed panicked and I found Kyle on the toilet having a seizure and his head had hit the wall. Thankfully, the opposite side of the side he had surgery on, but it was just like very jarring and he was his whole right side was just nonfunctioning and I definitely couldn't have gotten off the toilet. He couldn't have walked to the elevator downstairs to a lift. So, I had to call 911 and thankfully their station is like a couple blocks away and so they were able to get here in like 4 minutes. I mean, it was so fast and they were so kind.

[00:05:10]They took us back to the hospital. So, literally, we were gone for like 12 hours before things took a turn. And then we get to the emergency room, things are okay. His labs are showing that his sodium was really high, which there's kind of mixed feelings on what that could be. It could be what happens after seizure. Sometimes that can show up. Oh, I feel nauseous like reliving all of this. Um, and then they take him to get a CT scan and he had another seizure which thankfully only lasted like 10 seconds.

[00:05:50]It was a very like small minor seizure, but we were like, "Okay, that's weird.

[00:05:55]He doesn't tend to have these like clusters, so that's not normal." And then they take him back for an MRI and I decided I was going to go back to the Airbnb because at that point we knew that we were being he was going to be readmitted to the hospital and I was still in my pajamas so and hadn't brushed my teeth or anything and hadn't brought any of our belongings. So, I came back to the Airbnb, which is like thankfully not very far from the hospital, and I'm almost finished getting our stuff together, and I get this call, and it was an Arizona um area code. So, of course, my like heart just sinks. And it's the nurse that's taking care of him in the emergency room, and he's like, "Just so you know, Kyle had another seizure while he was in the MRI." And I asked, you know, how long did it last? Like, what did it look like? He said people in the MRI had told him that it was about 2 minutes and 30 seconds, which is a lot longer than any of the seizures he's had have been. Full body, you know, grandma seizure.

[00:06:56]>> Obviously, we wake for it.

[00:06:58]>> Yeah. Conscious. He knew what was going on, but still had no control over anything.

[00:07:03]>> And so I went back to the hospital. They said, you know, we're getting him calm and then we're putting him back through to finish the MRI. So, I finished getting my things because there was I didn't need to rush because I couldn't be there with him anyways because he wasn't in the emergency room. He was in the MRI machine. And so, I get back there and then we just sat and waited till they could get a room ready and just like more labs came back and everything was looking fine. The only thing that was high was his sodium. So they had him on a lot of fluids and then they put him on a bunch of medications to stop the seizures after that seizure that happened in the MRI. So Kyle Kyle was kind of out of it. I mean he was coherent but just like very like low after that. Also he had three seizures but we were in the emergency room. So it's like you can't really sleep even if you're exhausted cuz like there's like yelling and beeping and like there's so much happening. So, we both had headaches from just the overwhelm of being there. And then they finally get him to a room. They put an EEG, which like measures your brain waves to kind of get a sense of what's going on. And he didn't have any breakthrough seizures. So, they ended up keeping him for two nights. And they were like, "Okay, we're not worried. Like, it seems that the new seizure medicine we put you on is controlling this. Your scans are completely stable. Like, there's nothing of concern of like why this is happening. there's a little bit of blood in the brain which can like really irritate the brain which can cause seizures and also the blood is normal after surgery. So like that's not concerning. So the plan was they were going to let us go on Monday, Memorial Day. And we woke up that morning. Kyle had noted that there was some like fluid dripping from his head. The overnight nurse was like, "It looks like it's just sweat. Like it looks like you were sweating. Like we're not worried." But then like a couple hours later, he woke up and like his pillows were drenched and we let them know obviously and they looked at it and they're like, you know, we're not really concerned. I was concerned because he has a history of cerebral spinal fluid leak, but they didn't seem worried at all and they're like, he has a shunt, so it should be like circulating that spinal fluid and clearing it out if there's an overp production. So, they let us go on Monday. And then yesterday, we woke up in Kyle's pillows and stuff. His dressing was completely drenched in this fluid. So, we had called the plastic surgeon because he was supposed to have a posttop and I hadn't been able to schedule it. And so, I called to schedule it and they were like, "Just come in." Cuz I let them know what was going on. They looked at it. When we left the hospital, he had this like big bolster like stapled over the fresh new skin that was grafted from his legs. So, they removed that yesterday and everything looks good. Like the closure looks good, the skin is healing, but then they laid him back and lifted him up and it just started dripping. So, they called his neurosurgeon's office and they were like, "Have him come in.

[00:10:05]We're going to readjust his shunt and we'll like look at him." And Dr. Smith, his neurosurgeon, is actually on vacation this week, but he has a whole team thankfully. So, his PA looked at him. He was able to adjust his shunt and he's like, you know, this can kind of happen. We're going to take your shunt all the way back to zero. And zero basically, I had to look this up cuz I forgot to ask. Means that they'll like it's just like going to clear as all it's like giving it full force to clear as much as possible. So the higher the number, the the less fluid they need to circulate and clear out of the brain, basically. That's my understanding. So they took it all the way down to zero.

[00:10:43]And now this morning, he's still leaking. So we're waiting for them to call us back to figure out like is there anything else we need to do? Because he's also not allowed to lay horizontally. He has to be upright at all times. So I kept waking up all throughout the night and checking on him being like, you got to move further up on the pillow. You're too too low down.

[00:11:04]It's been a lot. Yeah.

[00:11:08]Yeah.

[00:11:10]How do you feel?

[00:11:12]>> I feel badly because of you and I feel badly because of me.

[00:11:23]>> It's just like a lot to process.

[00:11:25]>> Yeah.

[00:11:25]>> I feel like we're both overwhelmed. It's like there was no like this there was no gradual change. just like all these things at once and like to see Kyle have to use a walker and like need to help get him dressed and like these things that I know he's capable of but he's not. So there's just like a lot of grief of like missing when things were like simpler.

[00:11:49]So yeah, and I wish I could take it all away for him and just like snap my fingers and everything was normal and he could walk and he could have all of his right side function back and his brain cancer was gone and everything was normal.

[00:12:17]I would if I could wait for the ambulance to go by. It's not for us thankfully.

[00:12:27]So that's our update. Uh it's been hard and things are uncertain. We're here for another week and we're just maintaining like his dressing changes and waiting for them to call and hope that he doesn't have to be readmitted and maybe there's something they can help with an outpatient. So, that's where we're at.

[00:12:46]If you have any good shows or movies you recommend watching, uh that's what we'll be doing because we're not going to be able to move it around. I have just doesn't have the energy for that right now. right now.

[00:12:58]>> Yeah, >> we're just feeling the feels.

[00:13:03]Anything you want to add?

[00:13:05]>> Um, no. Just like that. I feel so bad. Um, because I'm doing this to you.

[00:13:17]>> You're not doing this to me. I mean, but I >> we made a commitment to be together through all of the things that life gives us. And right now, this is it. And I'm going to love you and be there and care for you because you're my favorite person in the world.

[00:13:40]You deserve it.

[00:13:44]You do. We all deserve to be loved and cared for.

[00:13:51]All right, we love you and we'll share more when we know more and hopefully the next update is full of things in the right direction.

[00:14:01]>> Oh my gosh.

[00:14:04]>> Thanks for loving and supporting us through all of it.

[00:14:09]Bye.