Support Levi's Medical Journey and Road to Recovery
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After 34 days in the hospital and 3 brain surgeries, we are blessed to have our precious Levi home, but now the bills and financial realities are starting to pile up. Levi is adjusting to being home and doing well. He continues to be seizure-free and is eating well and gaining weight. With that being said, he still has a long and unknown road ahead. As a result of the brain bleed, he has very low muscle tone and is at high risk for cerebral palsy. He will need to start physical and occupational therapy within the next few weeks to set him up for the best outcome possible. He is on medication to control the seizures and will continue to be closely followed by his neurosurgeon and neurology teams. This entails frequent doctor visits and routine MRIs. At this time, we are uncertain of the amount and type of care he will need and are not able to return to work as soon as we initially planned. The next 6 months are crucial because that is when his shunt is most susceptible to infection or a clog/malfunction.
We were very hesitant to write this, but even with full medical coverage, the $8,000 out-of-pocket deductible and the upcoming new year when the insurance and deductible will start over at $0 has us financially stressed. With the uncertainty of a return date to work and all of his ongoing medical treatment and therapies, we are asking for all of the help we can get to give our baby the best possible life we can. If you are unfamiliar with Levi's full story, feel free to read more below.
We understand if not everyone can donate at this time, but please feel free to share Levi's story as a share can be just as helpful! We are immensely grateful for any support you can offer, whether it be financial, emotional, or simply keeping us in your thoughts and prayers. Your kindness and generosity means the world to our family during this challenging time. 100% of the proceeds will go towards Levi’s medical care.
Thank you,
Ryan & Kristen
Levi's Story
- Levi was born on September 12, 2024. His first two weeks at home were absolutely amazing and we were adjusting to being a family of 6. On September 27th our world quickly got turned upside down. At 15 days old, Levi began vomiting, was lethargic, and was seizing. He was taken by ambulance to our local hospital and was then airlifted to Arnold Palmer Children's Hospital in Orlando. While there, it was discovered that Levi had a grade 3 bilateral brain bleed (IVH). The right side was worse, and blood leaked out of the ventricle and onto his brain, causing possible damage. The brain bleed then caused him to develop hydrocephalus. This condition is when too much cerebral fluid is in the brain causing a dangerous amount of pressure to the brain. He was in the ICU for a week and then moved to a main floor while he was closely monitored. While there, he continued to lose weight because of excessive vomiting and extreme fatigue. He had a feeding tube put in to assist him with food intake but still struggled to keep anything in his stomach. After 18 days in the hospital, Levi underwent his first surgery. This 5-hour surgery included multiple procedures and the insertion of an external drain to remove fluid from his head in order to reduce the pressure off his brain. He returned to the ICU, and the drain remained in for 5 days. After 27 days, his feeding tube was removed, and on the 29th day, we were finally discharged. After being home for 4 days, Levi started showing symptoms that the pressure had built back up on his brain, causing him to regress significantly. We went in for an MRI, which showed immediate action needed to be taken. Levi was readmitted to the hospital by his neurosurgeon, and surgery was scheduled for that night (October 31st). This surgery was to insert a VP adjustable shunt that would reroute the excess fluid from Levi's brain to his abdominal cavity so he can dispose of it through his bowels. Levi had a hard time after this surgery and was very disconnected and had continuous vomiting. An MRI showed that the shunt needed to be repositioned to be most effective. Levi then underwent a shunt revision surgery the next morning (November 1st). After 4 more days, he was again discharged from the hospital. The next 6 months are crucial because that is when his shunt is most susceptible to infection or a clog/malfunction. He will continue to be closely monitored by his neurology and neurosurgery teams and receive tons of love from his family!
Organizer
Ryan Young
Organizer
Titusville, FL