Prayers for Avan

It was Saturday, January 7, 2023, when my life took a turn. It was a normal Saturday morning for my family and me. I woke up fed my newborn baby girl (Ari) and proceeded to do my normal routine which consisted of fixing my two-year-old son Avan his favorite breakfast, which is waffles. When I finished making his breakfast, I put his food in his room and let him play while he attempted to eat. However, this particular morning, he did not touch his breakfast which was very odd for Avan. As the day went on I noticed he felt warm so I proceeded to check his temperature which was 100.3 that morning. Avan usually loves taking his medicine so much that he gets excited about it and brings it to me sometimes to give it to him. However, when I attempted to give Avan some Tylenol on this particular morning, he did not want it. Instead, he pushed my hand away, refused to take it by tightening his mouth, and wanted to lie down and go to sleep. After some time passed, he woke up and I was able to give him the Tylenol. His temperature then went down to 98.1 and he was back to his normal self running around and playing. As the day went on I noticed he wasn't eating or drinking as much but he still ate a few snacks and continued to play. He no longer had a temperature so I did not think anything of it and proceeded as I normally would. Around four (4) that evening I gave him some ibuprofen just for precaution to keep his temperature down. Around six (6) that night, I noticed that he started getting warm again. I then put him in the tub, put his pajamas on and tucked him in the bed and he was fine. I checked his temperature again and it was 104. Now, 2 months prior to this occurring Avan had RSV which then turned into a cold that seemed to not go away and continued to get fevers. However, I was able to give him Tylenol and the fevers went away instantly and he continued to act like his normal self (playing and being silly). After his temperature reached 104 that night on January 7th, 2023, things started changing rapidly. While I was taking care of my newborn, I left Avan in the bed to rest and put a rag on him to cool him down. As I was checking on him periodically, I noticed that he was a little winey and had changed positions to lie on his stomach. When I checked on him the last time before calling EMS I turned him over and noticed that he had a blank stare and was making a weird noise. Although I did not witness him having the seizures, I am aware of the aftereffects. I then rushed and called the EMS and they informed me that when they arrived at the hospital my son's temperature had reached 106 and that he had probably been seizing for a while without my knowledge. They explained to me that when children have seizures they come in different forms. Since Avan's was a blank stare I was unaware and thought he was sleeping the entire time. Avan has never had a seizure before in his life and if he does have a temperature I am always able to keep it under control and get it to come down. This was the scariest night of my life. Once admitted to the hospital, Avan was in ICU for a week for close monitoring due to his high temperature. They took his blood and ran several different tests to see what caused him to all of a sudden go into this state. The first few days in ICU were an emotional rollercoaster because we kept receiving bad news after bad news. His bloodwork numbers were high and his heart rate dropped down to the 40s at one point. They then did a CT scan and MRI on his brain and realized that his brain had suffered severe injury and swelling. After studying his symptoms, along with the brain injuries he had suffered, they diagnosed him with a rare condition called Acute Necrotizing Encephalopathy of Childhood (ANEC), which happens when your body is unable to fight off a regular viral infection such as a common cold. Instead of your body's immune system fighting off the virus, your immune system weakens and your antibodies attack your brain over a period of time. This condition is so rare that it is barely in any medical books and some of the best doctors have no answers on the outcome of his recovery, which can be very stressful. Prior to this Avan has gotten sick with colds, the flu and other viruses and has been just fine. However, with this condition, he will have to relearn how to do everything (walk, talk, sit up, eat, etc..). On the bright side, Avan has fought through and continues to fight every day. He is now in a regular room at the hospital and all his bloodwork and vitals are getting back to normal limits. The doctors are stating that he would benefit if he is transferred to Levine Children's Hospital in Charlotte, NC to get the best treatment, which involves intense three (3) hour therapy every day. Due to his condition and my circumstances, I had to stop working to be by his side, as he requires a 24-hour bedside watch, due to him only being two (2) years old. As they informed us that this can be a lengthy recovery for him, I am unsure of when I can return to work and how long we will be in Charlotte. This is a lot for me to process as I just had my baby girl on December 13th, 2022, and will have to pack up my life to move to Charlotte for him to receive the treatment he deserves. I never ask anyone for anything and I never ask for much but for my son, I am willing to put my pride aside and accept anything anyone can give us on his journey to recovery. My prayer is for this program to return Avan to his normal self and for his story to inspire another child and/or parent that happens to go through the same thing me and his dad have gone through and will continue to go through as he soars through this storm. With your support, Avan can and will make a full recovery from this illness and will be back to himself in no time. We thank you in advance for listening to his story and supporting us on his road to recovery! All support is accepted!