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  • Writer's pictureNicole

Love Through the Eyes of a Rare Disease Medical Mama : A Valentine’s Trip to Cohen's Children's Hospital PICU




foxg1 syndrome girl josie in cohen's children's hospital New york

Valentine's Day is in the air and the song in my head is, “why does love have to be so sad?” by Derek and the Dominos. 


As any parent can attest, when our kids aren’t well, our hearts are squeezed in pain. The sadness lives under our eyes and in our bones and only lets up when they are better.


It’s just being a parent. It hurts. 


February has been a rough month for our Josie girl. After a 26-day seizure-free streak, for no rhyme or reason, the seizure monster showed up again. 


I’mmmmmm baaaaack. 

Let’s call him Jack. The mad unwelcomed beast that takes over Josie’s sweet innocent brain with no warning and no remorse. Well, somewhat of a warning. We feel him in the room. 


So the seizures came back, but that’s not all folks. The problem du jour is that Josie has been throwing up almost every day for most of the month. 


Why? 

We believe the reason for her throwing up is because she has - like four - big teeth coming in at once, which is causing a flood of saliva, which she gags on. 


Teeth -> saliva -> gagging ->puke.


We’re armed with a suction machine, quick on the draw like John Wayne. All day long trying to catch the drool from going down her throat. But, at some point in the day, we lose the duel. Josie makes the gag-face of defeat and there it goes - her last meal and we pray not her medications. Please not the meds! 


We tried a medication to dry the saliva, but when they say “may cause blurry vision,” it may. She couldn't see. We have an appointment to inject botox into her salivary glands, which is a common treatment in the FOXG1 community. Fingers crossed.


As I’m writing this from her hospital room, her seizures, saliva, and throwing up are not even the problem. 


This February, exactly two years since we spent three weeks in the PICU due to sepsis, the sepsis monster decided to drop in again. He makes Jack look like a wimp. 


It was on Valentine's Day when we knew she had another UTI. All the signs were there. We know them all too well. The at-home test was positive so we started her on antibiotics, plus more probiotics, cranberry, and d-manos supplements. 


The next night, she threw up again, but it was different this time. It was more violent and just more awful. My mind raced all night: What if it’s not saliva causing this? What if we’re missing something? How can someone just throw up like this every day? She’s losing weight. She’s losing electrolytes. She can’t breathe while it’s happening. We needed answers. Something more was going on. Was the UTI worse than it seems? I knew. I thought we should just take her to the hospital.


Well, at 6 a.m. that decision was made for us. She was burning up. 103.8 fever. She had that same look she had in 2022 when it was sepsis. 


Call 9-1-1.


Tanner woke up for school and saw the ambulance in the driveway and EMTs pouring into our house. He knew. He will be 17 years-old next month and has been experiencing this since he was five. I remember the time the police stayed with him when I left in an ambulance and they played video games together. It was Tanner who said to us the night before, "Something is really wrong with Josie.” He heard her throwing up and breathing so heavy and said it wasn’t ok, it was “low key OD,” which means “kinda too much” in teen talk.  


After what felt like two minutes in the ambulance, we got to the ER and the team sprang into action. 


Confirmed: it’s septic shock. 


foxg1 girl Josie in the ER with her mom

They asked if they could intubate if needed (it wasn’t needed). The memories of almost losing Josie two years ago due to this exact same thing came rushing over me. It wasn’t as bad, but they were worried. They got a urine sample and found her veins to start the IV antibiotics.


I rattled off the antibiotics she’s allergic to, plus all her meds, her medical history - the drill medical mama’s can recite backwards. 


Her lungs are clear! That’s major. This septic shock is all due to the UTI.


We were admitted to PICU. Josie was loaded with broad based antibiotics to kill the infection. A big problem was that her blood pressure was dangerously low. They put her on epinephrine and we watched the monitor like a hawk as they attempted to taper her off of it. 


Today is February 17th and at 6 a.m I woke up in my couch-bed next to Josie to the nurse telling me the good news, “Josie is completely off epinephrine and her levels are “perfect.” 


I felt like someone just gave me a heart-shaped box filled with all my favorites. 


Josie girl is kicking sepsis’ ass.


We’re still waiting on the actual cultures to come back so we can target him and finish him for good. 


Right now, I’m looking at her beautiful face smiling as she watches Moana for the 10,000th time.  It never gets old. I think a cool band should do a  cover of “How Far I’ll Go.” Just putting that out there for any takers. 


The doctor thinks we might be moved to a regular floor tomorrow and - fingers crossed - maybe go home by Monday!



The sadness is lifting from under my eyes. Maybe, love <doesn't> have to be so sad. 



Thank you to everyone for the love and support. I feel it in every text, message, call, thought. Thank you to Josie’s super daddy, my medical tag-team husband. My heart breaks for parents who don’t have this support.  


I’m praying all the monsters stay away and we all get back to living the Joyfully Josie way.


Thank you for joining us in praying for protection. 


Sending you all Valentine’s love from Josie girl.


xo


One last note: To the nurse who brought me an extra cup of dole pineapple bits when I didn’t want anything else on the dinner tray. Small acts of kindness really make a difference. 


OK one more last note: As all this was happening, so many incredible things have been happening with the foundation. Stay tuned for more and please follow /subscribe to the news on www.foxg1research.org


댓글 2개


theblossomclinic
2월 19일

You’re an incredible mama. I picture you listing off her medical history and allergies while in crisis mode and I think you’re a hero. She-ro! Mama-Ro!

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khreiner
2월 18일

Sending prayers to Josie! Nic, you blow me away with your positivity and strength! 🙏 ❤️

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Hear Josie

Laugh!

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