Mar 14, 2023
Pediatric pulmonary hypertension caregiver, Kori Siroky, gives a raw and emotional account of her daughter Lilly’s 13 year battle with PH. This interview was conducted on the 4th anniversary of Lillyanna's passing.
I'm Kori Siroky, I'm from Nampa, Idaho. My connection to
pulmonary hypertension is through my firstborn daughter, Lillyanna.
She was diagnosed when she was one and was told that she wouldn't
make it to five, but she made it to 13 and eight days. Lilly was
diagnosed about one years old, and doctors told us that she had to
start sildenafil. It was a medication to open or dilate her blood
vessels, and it would help her survive longer. If she was to miss
this medication, her veins would collapse. It is not easy giving a
one-year-old medication, or trying to keep oxygen on them, because
she was told to keep oxygen on 24/7, until they could further
navigate her condition. They said PH was so rare and different for
each individual patient. Not every patient was having the same
levels. There's no navigation like cancer would have, between stage
one, two, three, four.
PH is off the charts. You can be fine one minute and collapse the next minute. You can be at 98 oxygen level, and then be at 75. So they were like, this is very erratic. But for Lilly, she really didn't have to keep oxygen on 24/7. She tended to level out, and Dr. Szmuszkovicz was like, "If she's okay, she's okay, until she's not, and then we have to address it." I was like, "Okay." Some of her medication, there was times it would be delivered and the delivery driver threw it in our yard and the dogs ate it. It was so hard to get the medication back because it was essentially Viagra, and it could be sold differently. So I was stressing trying to get the medication, but she was diagnosed pretty quickly, and they told us we were lucky because most patients aren't diagnosed like she was. We found out through her being born with holes in her heart. They did a right heart catheter, and that's how we found out at an early age.
It was difficult fighting childcare as a young mom, because with pulmonary hypertension it's such a rare condition and life-threatening condition that most day cares didn't want to accept a child with those kind of conditions. They didn't feel that they had the means necessary. Even going to school was difficult, because the schools wanted different doctor's notes and all these extra things, and what to do. But we got through it. We were really blessed with a lot of good school nurses. But she did pass out at a couple times at a young age. I remember in fifth grade she passed out. It looked like her bones left her body. She was just walking from one side of the playground to her line, and she just passed out. I had to meet at the hospital and follow an ambulance.
We were in and out of the hospital constantly from a young age to an older age. She did better, though, than most kids, from my understanding. When she would get sick, she would be in for maybe two, three weeks but then get out and be perfectly fine. Dr. Jackie said that Lilly was a miracle baby when it came down to it, because other kids weren't as lucky when it came down to the condition taking over them.
I started looking into other countries, and how they treated pulmonary hypertension, and diets, and how to keep her healthy longer, and how much water to drink and green juices help with the liver, because a lot of kids go into liver failure, I was told, due to all the medications they take. Especially from her taking it from one year old till however old, the doctors, "Didn't know how long she'd make it." It was pretty scary because I always wanted to be a mom, and my firstborn to be diagnosed was pretty rough.
I remember for a minute I was reclusive because I was scared of memories. One of my friends told me, she was like, "Hey, what if she makes it? Make these memories, and keep on going." I was like, "Okay." So it was a battle between not getting too depressed, and trying to keep a positive attitude. So I started getting self-help books for that as a mom, and how to keep Lilly positive. I'm like, okay baby, what can we do? Let's focus on what we can do and not what you can't do. You could do archery or you can walk, but she couldn't walk very far with without not being able to breathe too well. I was like, man, I got to get fit so I could piggyback ride her. So I'd give her piggyback rides because she'd run out of breath. She'd wear oxygen when she would sleep. There was just so much... And alarms. So it'd be her alarms going off to make sure she didn't miss her medicine. My alarm's going off. My sister's alarms going off. It would be like the bells ringing at a cathedral, because we're all stressing about this medicine. She got to a point where she had to take another one, and another one, and another one. She hadn't done anything to earn such pain all the time, because her jaws hurt, her joints hurt. She would be vomiting and diarrhea at the same time. I'd be cleaning up the throw up on the floor, and humming a song, trying not to cry in front of her. She'd be like, "I'm sorry mom." And I'm like, "No baby, it's okay." I was like, "I'm sorry you have to go through this. Maybe we should change it back to the other medicine." We're trying to juggle how much her quality of life would be. We didn't want it to be too rough. So we kept trying to avoid that pump.
She did really good. As a parent, you always wanted to be the one to tell your kids you could do anything. You could be anything. You can go anywhere, except for too high in elevation, and except for you can't dance, and you can't do soccer, and you can't do anything that makes you run. Lilly wanted to be a ballerina one time, and her doctor let her try for a minute, and I had to tell her, "I'm sorry baby, we got to stop," when it started elevating her pressures in her lungs. And all these tests that she already had to do. She just wanted to be a ballerina and I had to tell her no. Then I got the, "Oh, well you hate me, you don't want me to be happy." And I'm like, "No baby, that is the polar opposite. I would love for you to be that ballerina, and go run marathons, and do everything that everyone else could do that's perfectly healthy and takes advantage of it."
Then we rode that line of not being bitter, because for a minute Lilly was like, how come cancer gets all this awareness? I'm like, I know baby, and I know it doesn't seem right, but cancer takes lives too. That's why we're trying to raise awareness and we do barbecues, and we put together fundraisers and got it in the newspaper. We got to see all these other kids, and there was an upside to that. You get to see the stories and how those parents are no caffeine, yes caffeine, no candy, yes candy, only healthy food, different things or what they do instead of being able to. Lilly and I, we'd do puzzles. We'd love to do puzzles because that wouldn't put her out of breath. It was so much, it was overwhelming, but I kind of missed it. Obviously I would do it all over again a hundred times if I could have Lilly back. But it's a rollercoaster, and it is hard not getting bitter. The downside of that, you see some parents that don't want their kids, and they're treating their kids terrible. And you're over here fighting for your kid's life, wanting every second and counting every second.
Then you see other parents losing their babies with pulmonary hypertension. It was really hard. Lilly and I would cry sometimes. We'd sit there and read about Kendall passed, or Elena and all these other kids. Then you're like, wow. Then Lilly's like, "Mom, how come that baby didn't live and I did?" And I'm like, "I don't know baby. I don't know. It happens. Maybe she had other conditions." Trying to figure out how to not have survivor's guilt from it, because Lilly was definitely feeling it, especially when the younger babies would pass.
There's no words for pulmonary hypertension, and the rollercoaster it puts you and your friends and your family through. You have to monitor who comes over, whether they're smokers or non-smokers, if they're sick, they're not sick, did they wash their hands? What are they bringing in with them? You got to monitor certain candies and diets and just everything, it seems like, it's different. It's organized. You have to be organized. That’s for sure.
To tell you how sudden pulmonary hypertension was for us… On April 27th, I was getting ready to drop Lilly off with her dad. We meet at my work. She'd mentioned that her chest hurt a little bit. I worked at Sport Clips at the time, so she loved to go get the candy in the back, because we kept it there. She walked to the back. But when she was coming up, she stopped, and I was in the middle of cutting my client's hair. I said, "Baby, are you okay, do we need to go to the hospital?" Because you never know. She said, "No mom, I think I'll be okay." Then she looked out at her dad and I said, "Hey, if you need to go to the hospital, we could go." She said no, she said she was fine. So she went to her dad's.
I got off work maybe six hours later. She texted me and she said,
"Mom, I think I need to go to the hospital. My chest hurts pretty
bad. I think it's bad this time." Normally, I was in a complete
panic, freaking out for a second mentally. But when she texts that
I felt like I already knew that it was bad, because Lilly never
really would complain ever. I told her, I said, okay, really bad,
or can I wash these 18 clients' hair off me? How bad. She said,
"Well you can rinse off real quick." I said, "Okay, I'll just
rinse." I just rinsed and washed real quick and got in the car and
then I was like, "Shit, I forgot the oxygen." Normally, I had it
already first. I went in to get the oxygen and my boyfriend at the
time was like, "Do you want me to drive?" I said, "Maybe. I'm not
feeling too good." My chest was super heavy, more than normal. We
were stuck in traffic. Lilly's like, "Are you guys almost here?" I
said, "Yeah, we're in traffic." When we got there, I could feel her
chest pounding really heavy when I picked her up. I was like, okay,
we got the oxygen on in the car. We get her to the hospital. They
said there was a lot of fluid. They gave her Lasix and she threw up
a bunch of just phlegm. I looked at her, and I saw she was kind of
gray. I was like, oh, this is pretty bad. I started calling people.
I was like, "Hey, I think I don't know what's going to happen.
Lilly's pretty bad this time." I could tell, because I was just
reading all of her stats, everything. You kind of become a nurse
with pulmonary hypertension. You got to figure out stats.
I was like, okay, maybe not. We're going to be fine. She's going to be fine. She always comes out of it. So they were like, we're going to ambulance her to Kaiser. So they took her to Kaiser, because she used to be with CHOA [Children’s Hospital Los Angeles], but when I got divorced, her insurance changed. We get her to Kaiser and they're like, "She's really bad, she probably needs a transplant." I said, okay, well let's do it. I'm like, we're ready. The doctor said, "Well we don't give a transplant to pulmonary hypertension patients." I'm like, "What do you mean? You never told me that? Why would we have been on your insurance for two years if you never intended on saving her life when it came down to the wire?"
I said, "I don't care who you think you are, call Dr. Szmuszkovicz at LA Children's Hospital. She'll get her." So Dr. Jackie sent the helicopter for her. I love that woman more than any woman. Her compassion after dealing and seeing the amount of patients that she's seen is unbeatable. She sent the helicopter. They put Lilly under. The doctor from Loma Linda came to put her into the anesthesia. Her stats were fine. I was like, "Okay, your stats are fine. I was like, all right baby, you did it. You did it. Dr. Jackie sent the helicopter. We're going to get you your lungs and heart." Then her stats dropped. She just went. I watched them do CPR for 30 minutes. Tim was hugging me. It was me, Tim and Jessica, which was funny because that's who it started with, when Lilly was born, was the three of us.
Tim goes, "It's been 15 minutes, Kori." I said, "I'm not... No, they could keep going. They could keep pumping on her. She's going to come back." Right before they started the CPR, I remember I just had tunnel vision. I just seen Lilly, and I ran in and I kissed her on the forehead, and I came back out and they started CPR, and then the doctor came out and he's like, "It's been 30 minutes." I was like, "Okay, I can't tell you guys to stop." Tim was like, "I can't either." The doctor said, "Well, I can call it if you guys want." I'm like, "Well, you're going to have to." So he called it. They stopped. We all just stood there for a minute, because we're like really? I remember looking at the end of the hall and everybody else that was there to support us was just watching through that window, and they knew. I started pulling all the wires out of her. The doctor said, "No, we got to do that." And I'm like to get this shit off of her. She's done. Leave her alone. It was so quick. It was just, she was 13, only for eight days, and then she was gone just like that.
They told me I could sit there as long as I wanted, and I sat there till about six something. I don't know if I was sitting there hoping she'd come back, but walking out of the hospital was pretty hard because it was kind of weird. I just remember going, wow, it's pretty sunny outside, and everybody else is fine. I didn't even felt like I belonged anymore. I didn't know where I was. I guess I expected it to be as dark as I felt, or sad. I remember we got home and Lilly's dog came out, and that's what actually made me fall to my knees is my dog, Lilly's dog, came out. We opened up the door, and we just had Lilly's shoes. Kama looked at the shoes and then she looked at me and I was like, "I'm sorry, she's not coming back," and I just dropped.
The next morning I was on the couch and I woke up and I didn't even think to shut off the alarms, because I had a schedule for the girls. So I had 5:30, wake Lilly up. I couldn't wake her up. So I took a shower. Then I was like, why am I even shampooing my hair? Why does anything even matter anymore? And I didn't say it out loud, I tried to save face at everybody, but all Lilly's friends were texting. My phone just started going off crazy, everybody like blah, blah, blah. I just looked over and handed the phone to my sister, like I am not even going to touch that. I actually still have my phone on silent more often than I probably should, but it's a little trigger, I guess, from her passing. But I didn't remember to turn the alarms off. So her medicine was going off on all the alarms. That was my first, oh, we're not going to have that anymore. That's not going to be a thing.
Then, when I went in her room, all her clothes and her birthday presents that she never even got a chance to enjoy. It was eight days after. I was like, oh shoot, what do I do with that? Then I opened up her binder, and one of the first quotes in her binder was “she was proof that you could walk through hell and still be an angel.” So I actually ended up getting that tattooed over my Lilly and my pulmonary hypertension ribbon, because she was. She was a good kid. She just smiled even though she was probably suffering more than most humans, when it came down to feeling the way she felt. She wanted to raise awareness. She wanted everybody to know. When she met One Direction, she wrote them out a letter and thanked them and gave them PH bracelets. Her Make-A-Wish trip, that's what she wanted, was to meet One Direction so that she could raise more awareness.
Planning a service was pretty rough. We were really blessed through GoFundMe. Me and my sister, my best friend, Lilly's oldest sister, and my cousin Ruby that raised her along with one of my best friends from junior high, dressed Lilly before we put her in her casket. It was all of us. We went together and I braided her hair, because that was her favorite thing. We put her Chucks on because she loved her Chucks. We got her a dress for prom, because we realized she would never go to prom. Her little boyfriend, Ethan, I asked him, "You don't have to, but do you want to put a corsage on her?" And he did. So she got everything.
We do her heavenly birthday on her birthday, so we're like counted as, yeah, she's going to be 17, but it's her fourth heavenly birthday. So it's just a little different. We try to keep positive as best as we can, but we're not completely out of the woods, I don't think ever, on that heavy weight on our chest, or the random tears that fall when you hear a certain song, or just missing her laugh, I guess. I really miss hearing the laughs, and all the kids laughing together. It's definitely changing, but it's starting, I guess for us to live it with a different new normal. We say when we have PH, you have to live a new normal. Now we're living a whole other new normal.
This year we actually celebrated, I didn't celebrate holidays after Lilly passed. Year one I didn't decorate, nothing. Year two, nothing. Year three I got a tree, and I put that up and we decorated that, but I didn't pull out all the other decorations like I used to. I used to really celebrate. This year we actually decorated. We got a tablecloth. We celebrated, and we spent Christmas with other people. We've been so isolated from everybody between Lilly passing and then COVID right after, we just didn't have anybody to hang out with. So this year we did it. New Year's, I actually stayed awake, but I'm actually able to feel like I'm living again.
I took off to Kentucky with the girls this summer. We wanted something new and different, so we went to Kentucky and found ourselves out in the middle of nowhere, and came back with -- we got to live again. This summer, we're actually going to go hiking again. We're actually going to try to go do things because since Lilly's passed, we haven't gone hiking. We haven't gone camping, or anything that we used to do with her. It was pretty hard because I remember me and my sister when we did try to go camping and it was hard because we were counting heads, and we always had one missing. So we stopped doing everything, it seemed like, for a while. We just didn't know how to go forward with, are we going to live too much without her? Are people going to think that we're living too fast or too slow? Then I got to a point where I was like, I don't care what anybody thinks, I'm going to process this the way I want to process it.
I remember my uncle had told me anything that you don't try, you're choosing not to try to heal. He's all like, anything within reason, you want to go out and take a trip to Ireland, go take that trip to Ireland. Or if you want to start going to church, go to church. If you want to go see a shaman, go see a shaman. He's like, anything, you might as well try it. Which I did. I actually did start seeing a shaman. Then from there I've just gone up more with trying to live in the moment and more that we're all energy, nobody really dies, in a sense, kind of life. I still believe in God and I have my beliefs, but it's brought me comfort knowing that we'll probably see Lilly again. It was pretty interesting. I actually seen a guy, Peter Roth in New York, who does readings. He told me that in my past life, Lilly was my mother. So I thought that was interesting when I went through that. I mean I take it all differently, but what I choose to believe, I choose to believe, and I don't push it on nobody.
I read Many Lives, Many Masters, A Soul's Journey, a lot of books by MDs because I started college January before Lilly passed. Her and I were talking about her going to the college/high school because she didn't know if she'd ever live to go to college. She thought it'd be cool when she made it to high school that she could do both, and you gain your associate's degree or something like that. Then I went to college. Lilly was laughing at me because at one point I had a 0.43 GPA and all I was passing was choir. She said, "Mom, I didn't know that GPAs could be that low." I was like, "Well if you look, I wasn't really trying. I just went to choir." Then I started college and I was like, "Well, I can't disappoint my daughter now." So I studied and I actually made it to the Dean's List even after, because I was in my first actual semester when Lilly passed. I got that GPA with a 3.8, so I missed it by a little. I was like, all right, Lilly, sorry, I was having a rough time. Then after that, I kept getting the 4.0s. So then I got to the Dean's List. I haven't finished my associates yet. I stopped after COVID because I had to become a teacher for my kids.
I was trying to get everything together, but it's been an uphill and downhill, just trying to figure it all out. I don't know, I try to live more like what would Lilly want us to do as a family, and how would she want us to move forward and not disappoint her, or not live life, because she was full of it, full of life. She always was on the go, wanted to make everybody smile, wanted make everybody happy. I got to go through her phone after she passed. She was reaching out to friends that were not feeling good about themselves. I got to see all the different sides of her. I was like, okay, so we don't need to be too sorrowful. We definitely miss her. We can do little things to let her know we miss her. We like to leave those rocks, you paint them. So we'll leave them with PH on there and just set them somewhere. We take the opportunity to tell people about pulmonary hypertension.
Right now I'm settling with the fact that I'm telling one client at a time, or one family at a time when I meet them. Because it's definitely a rough question when somebody asks you how many kids do you have? That happens all the time, being a barber, “Oh, how many kids do you have, and oh, how old are they, or boys and girls?” At first, I would be like, “Yeah, I got kids.” Now I'm like, “I have three, one in heaven and two down here.” I cannot not claim Lilly. So yeah, it's adjusting, but I just try to stay as positive as possible, and count my blessings.
My name is Kori Siroky, and I'm aware that my daughter was rare.
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