Help with Expenses for Daphne's Spinal Surgery

Help with Daphne’s Spinal Surgery Expense’s Part II

Our daughter Daphne is an Autistic 8 year who is filled with love and life! She was diagnosed with a rare form Spina Bifida in 2018. Daphne has had many health issues due to the Spina Bifida, culminating in a nearly 7-hour Spinal Un-tethering surgery, performed at one the world’s best Hospitals for Pediatric Neurosurgery, CHLA (Children’s Hospital of Los Angeles).

So, now nearly 3 years after Daphne’s original surgery we are having more medical issues. Daphne was AMAZING during the entire Surgical process, and after the surgery absolutely flourished. She started talking more, she has SO MANY words now, she talks in complete sentences, most times. Has an absolute LOVE for technology (see the not 1 not 2 but 3 Cell phones, and her own Personal Computer) loves watching Disney, YouTube, and so smart that it hurts sometimes.

During this after surgery #1 period came Covid, which severely affected our family. Amy’s mother was diagnosed with Covid Pneumonia in January of 2021. She spent 3 months in the hospital. She was put on a Ventilator for month and placed in a Medically induced coma to try to allow her body to heal. In early February 2021, the doctors made the call to the family, saying she might not survive much longer. We made the decision as a family to send Amy back to Texas alone, while I stayed in Las Vegas with Daphne, who was enrolled in an AMAZING ABA therapy school and doing so well. After all the prayers and support, Amy’s Mom managed to pull through and after 3 months was ready to be discharged. However, she was in no shape to care for herself at that time, so we again as a family decided to have Amy stay in Texas to care for her mother full time. In April of 2021 We choose for Daphne to join Amy in Texas. Amy started the process of finding an ABA therapy center and doctors to take over her care So that Daphne didn’t have a laps in service. After going back and forth between Las Vegas and Texas, I moved back in the summer 2021 so our little family was back together.

After Daphne’s original surgery, our Neurosurgeon told us that a small percentage of surgical patients, will experience what’s called “Re Tethering” which is usually indicated by either issues with back pain, toe walking, and / or issues with the patient’s bladder and kidneys. We started seeing signs of trouble with Daphne and after many tests, she was diagnosed with a whole new set of issues along side of all her current issues. Here is the alphabet soup of her diagnoses

Asthma 2016

Autism spectrum disorder 2017

Chronic constipation 2015

Essential (primary) hypertension 2022

Heart murmur 2014

Lipomyelomeningocele (CMS/HCC) (The original diagnosis that caused the 1st Surgery) 2018

PONV (postoperative nausea and vomiting) 2022

myelomeningocele s/p repair (This is the new diagnosis) 2023

Neurogenic Bladder 2023

VUR (bilateral grade 2-3 vesicoureric reflux in kidneys 2023

I know it’s a lot of fancy medical terms and I’m sorry. After the consulting with the Dr’s here in Texas, and many more tests, the Urologist and the Spine surgeon talked, they decided that Daphne requires a 2nd surgery on her spine,aka as De-Tethering Repair because her bladder and kidneys have gotten worse since her first surgery. The Urologist told her that we would repeat the Test again in 6 months after her 2nd surgery. Then start her on Catheter Program and then bladder Diversion surgery afterwords if they can’t get Daphne bladder to grow. Daphne still has more testing and a kindergarten Graduation before we travel to Los Angels for her 2nd spinal surgery. We have a appointment on June 22nd to see her neurosurgeon and then surgery on June 27th Daphne will then be in the hospital for a week and then we have follow up on July 13th for her post op.

Now to the reason for all this text. Amy and I live paycheck to paycheck. We have even started doing Gig Work with Door Dash and Uber Eats to make extra money so that Amy and I can stay above water. I work a ton of hours and make decent money but Amy can’t work, as taking care of her mother, and Daphne take up most of her time. This time, the trip to LA will be much longer, as we must go see the surgeon in LA BEFORE the surgery so he can do all his pre op testing and such. So the “Plan” is to go down to see him, stay in LA as they are trying to have the surgery scheduled for just a few days after the Pre Op appointments, stay in the hospital as long as Daphne needs to recover, then stay for approx. 10 days until Daphne’s 1st post Op appointment. Remember, this is SPINAL Surgery. The 1st 18 hours after surgery Daphne can’t even SIT UP. Plus, Daphne hasn’t always been able to vocalize that she’s feeling pain or discomfort due to the Autism. Thankfully, my work has an office about an hour from CHLA, which will allow me to work while Amy sits with Daphne during the day, but with driving (cant fly after surgery) to LA from Texas and back, and the potential weeks of a stay in LA for all this, the price tag is in the Thousands, and its simply too much for our family to handle on our own. We do have insurance and some medical expenses from all the testing that we have to cover that our insurance didn’t cover, before her OOP is met we are so close. Plus all the other expenses, lodging, gas, food etc. are all our responsibility. Most people who know me at all know I LOATHE asking for help from anyone. I have tried to always be able to handle anything that comes our way. I think I have done a pretty good job of it so far. But this is just too much for me and for us, as our regular bills don’t stop (Rent, utilities, car payments etc.).

Watching my baby sleep at night, crying knowing how hard I am struggling to make all this work just kills me. I’m a prideful father and husband and the thought of not being able to do what needs to be done for my little girl is like a dagger in my heart. So here we are again. Asking for help from our Family, Friends, and even strangers. Please know that every SINGLE PENNY of any and all donations will go to Travel expenses, gas and food, and the hotel/motel for the trip and any medical bills or medication needed for Daphne. Plus, you will have the eternal thanks of my little family.

If you want to see the original story of Daphne’s 1st surgery Here is the link to the Original GoFundMe we setup back in 2019 with all the background information

Surgery Part 1

Marc, Amy and Daphne Rivkin