On 9/24/2024 just 22 days after his 20th birthday, Justin suffered a traumatic life changing event that will forever be a challenge in his life!

My son, Justin Ryan Davis had an exciting day prior to the event which I think is important to share. At 2pm Tuesday September 24th he had a phone interview with the corporate office of MOSAIC in Southeast Lincoln, he was extremely nervous yet so excited! He had decided he really wanted to work in a human service job and possibly start classes towards getting a degree in social services. He was hoping to work during the day full time and still continue to work at his current job as a cook at Lazzaris in the evenings and weekends. He got good news that he passed his phone interview and was scheduled to go into the local office to do his second interview a week from Tuesday! As a DSP, he would provide support and guidance to people served as they learn and develop important daily living skills and life activities to live as independently as possible.

Within 3 hours, his life began to change due to the unknown factor that my son has an AVM in his brain that ruptured and caused a brain hemorrhage. It started with a headache, then blurred vision, vomiting, followed by a seizure and then cardiac arrest in our family home. I had been over at my daughters house visiting her and my grand babies after an ERN business meeting on the north side of town when Justin called me frantically saying he had a really bad headache and asked for me to come home as he was beginning to see double, he didn’t seem right so I went home right away.

My oldest son Michael was there and I got there as quickly as I could, we honestly had no idea what was going on, we initially thought he either was getting a migraine and possibly food poisoning once he got sick - but when we noticed he couldn’t move his arm and still had puke in his mouth we knew he needed to go to the hospital -we called 911 shortly after as he began to have a seizure when we tried to get him up to go to the ER and then went into cardiac arrest - my son Michael saved his brother’s life that day by performing life saving measures until the EMTs arrived so they could take over and get Justin to Bryan West!

Once we arrived there and after the CT scan, they discovered the brain bleed (bleeding stroke) along with the AVM and took him into emergency surgery. The pressure from the brain bleed was causing a mid-line shift and they needed to get that pressure off of his brain now! He underwent a right hemisphere craniotomy…. ( they removed the right side of his skull so that his brain could swell outside of his head) with this, they did a second procedure where they took his skull and inserted it inside his stomach to preserve it so that when they could put his skull back, it would be sterile and usable. The medical miracles that Dr. Gogela and Dr. Hawkins performed on Justin still amaze me. During all of this - he suffered respiratory failure and cardiac failure as well…. That was day 1 - Justin was in ICU for 28 days - battling cardiac and pulmonary failure along with his strokes and it was 14 days before they even attempted to embolize his AVM - the pure terror we felt as a family watching and experiencing this and not knowing if he would pull thru or to what degree of damage he had sustained and qualify of life he would/will have was just awful and heart wrenching.

At day 29, he was admitted to Madonna Rehabilitation L-TAC unit for 5 weeks then moved down to Acute rehab once he became more medically stable - although he still had a trachea for breathing and his skull was still in his stomach, elevated blood pressure, high heart rates, neuro-storming, quadriplegia and many other medical factors - he continued to do therapies the best he could while being in his “minimal conscious” state.

(what does that mean? The four main disorders of consciousness (DoCs) are coma, vegetative state, minimally conscious state, and post-traumatic confusional state. 

Explanation

• Coma
• A state of unconsciousness where a person has no awareness of themselves or their surroundings 
• Vegetative state
• A state of wakefulness without awareness, also known as unresponsive wakefulness syndrome (UWS) 
• Minimally conscious state
• A state of wakefulness and some awareness, with low-level interactions with the environment 
• Post-traumatic confusional state
• Also known as emergence from minimally conscious state (eMCS) 

Once it was time to get his skull back in we went back to Bryan West - unfortunately when we checked in, Justin had spiked a fever, blood pressure was high, heart rate was over 120+ and his white blood count had gone up to 16.8 - all signs of possible sepsis - after days - it was determined he was NOT sepsis - thank the Lord and they were able to move forward with his surgery. Unfortunately, this did cause a set back in his progress - his body didn’t respond well to a decline in medications so they had to bump everything back up and remove some drugs that were starting to help “wake him up” - this was tough but he was able to go back to Madonna on Dec. 23rd and start back slowly with rehab - including PT, OT, and Speech (he doesn’t talk, yet, so learning how to swallow, learning other ways to communicate was the main focus of speech).

We tried to stay local as we knew our Acute Rehab benefits were running out, but unfortunately, there is only 1 Skilled Nursing Facility in Nebraska that focuses on brain rehab, QLI and he was denied due to not enough progress for him to be successful there.

With that said, we had also been given a referral to On With Life in Ankeny, IA - they read about Justin and wanted to come visit him in person to see if he would be a good candidate for their “Disorders of Consciousness “ program - of course, we said, yes, please come!! They accepted Justin, but were very upfront and told us they would really like to have him much longer then our insurance would allow but would do their best with what time we could get to help us. On February 6,2025 I followed my son via ambulance transport to where we are now, On With Life - the genuine care and love we feel here is just amazing! Skilled nursing can be a challenge, but the people here really do try and the therapies he is getting are just awesome!!! He has increased his DOC testing score by 5 points in the past 4 weeks and is about 4 points from being considered “conscious” small steps… but every step counts…I initially planned on being here and heading back on weekends but, it just hasn’t work out like that, I need to be here to learn and to be my sons advocate - when you have a child who can’t talk, move on their own - they need a voice more than you could ever imagine - so I do what I need to and will forever do for any of my children, I’m here until it’s time to go home.

Now, that’s where things get scary, I am diligently working with the State of Nebraska DHHS to get Justin on waivers to help with his home care needs, but we will fall short unfortunately on cost renovations to have a bathroom he can access and also a vehicle to transport him - we will make due with bed baths and transportation services until we can get all of this lined up, but honestly the financial burden is what has me most stressed - my poor kiddo couldn’t stay in state for 60 days of skilled rehab nursing - so therefore our secondary insurance (NE Medicaid) couldn’t help out - and also pulled me away which has made it very difficult to generate business that I once was able to - it’s okay though, I had savings that I could lean on, Thank God and my mother, kids and my Brezina family have really stepped up to help me during this challenging time. So many other friends and family have reached out and have helped us in many ways and we are so grateful and thankful, we truly are 🙏❤️🙏 with the money we have raised up until now, it will be used towards medical bills, services and devices, durable medical equipment not covered (but very much needed ).

Sadly, it won’t be enough to cover what we need - so I have had a lot of people tell me to let them know if we need anything, as a proud strong woman and mother, I have always prided myself of being able to do it on my own, but now, humbly I am asking for help - I don’t know what we will all need, but I know we need the ability to have a bathroom that will suit my son’s needs, I know we need to revamp my living area so that he can use it as a bedroom (his room was on the 2nd floor and is not an option at this time) we will need to change the footprint of my living space including moving an exterior door from my garage to be handicap accessible as well as finding an affordable vehicle that will accommodate Justin’s needs in his tilt and space wheelchair. Lastly, I know I will be his main care giver and life will be ever-changing for myself and my family.

Most importantly, we are very lucky to have my son still on this earth, I know he can and will continue to fight and move mountains with the right support and I believe that what doesn’t kill us, WILL MAKE US STRONGER !!! I’m praying and fighting daily along side my son - I hope you will consider helping us too!

Kind Regards,

Amy, Justin and Family

(https://www.mayoclinic.org/diseases-conditions/brain-avm/symptoms-causes/syc-20350260)

https://pubmed.ncbi.nlm.nih.gov/36498778/