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#ButtaStrong

The 4th of July our sweet Butta was still his normal self playing , running , jumping off things, playing football with his brothers & cousins in the yard. A couple of days after he started sleeping in more, I noticed it but I brushed it off as it being that him & his brother would stay up all night playing Fortnite. He went to his Nana’s to stay a couple of days and she noticed that he was sleeping even more literally all day long, you could get in the car for a short 5 min ride and he was fast asleep. A few days later I noticed his balance was off as well I took him to the dr thinking maybe he had a summer cold & an ear infection that was throwing his balance off but of course that want the case everything was clear. A week or so goes by and he goes with grandma as usual on the weekend she calls and say “Butta’s sick he’s been sleep all day and can barely stand up” When she brought him home he could barely walk up the steps w/o his legs getting weak & him falling. I immediately took him to JMCGH ER & they sent me home telling me that my baby had stomach bug or maybe mono but didn’t test for either. A day or so later he has more symptoms where he would have these small seizures I took him to UT pediatric for him to be seen again for a second opinion & bc he didn’t have the seizure right then so they could see if they assumed that he was sleeping more bc of screen time & that he was falling bc he walks on his toes. As any mom that knows when their baby isn’t themself I was FURIOUS & hurt that no ones was listening to me when I kept expressing that something was really wrong. By this time school is starting and I warned all his teachers and let them know that I was getting a 3rd opinion but no one was listening. After about a week of school my poor Butta passed out at school and hit his head we rushed him to the ER & the teachers as well as the principal stood by me as we advocated for my baby because once again JMCGH sent me home saying that my baby just had “ syncope” which is fainting spells but with no explanation. I begged to be referred to a neurologist at Vandy or Lebonhuer. They all told me no it’s not neurological. My mom gut just kept telling me that it just wasn’t right, I went back home to my our family dr and he instantly without any questions got on the phone with Lebonhuer. His appt was 2weeks away but my baby was getting sicker by the day he came home from school & his hair was falling out just by rubbing it. I cried so hard cause I instantly thought the worse I called my pediatrician & told me go straight to Le Bonhuer I’m letting them know you’re on your way. We were admitted that night. My baby’s body was exhausted he was having small seizures all day long after a million different test the Drs came in on the 5th day and told me “Mom we have good news and bad news, we’ve gotten his seizures under control but we still have no idea what’s going on every test we’ve done has came back clear besides the inflammation on his brain” I was so sad just watching a 6 year old go through so much. They started him on medicine for the inflammation and sent us home until the labs they sent off to the Mayo Clinic returned. In the meantime my Buttaball started to get worse, he slept even more couldn’t get through a school day without sleeping at his desk. Thank God the teachers were understanding and still helped him with his work but his behavior drastically changed. He began to cry, bite, scratch , pinch , kick, scream & fall out‼️ It was a huge red flag that something else was going on cause my baby literally changed over night he could be in these episode for an hour - 1.5hr. I called his neurologist and she told me to rush him back bc something was affecting his brain and they wanted another MRI. After the MRI, lumbar & multiple EEG’s my baby was diagnosed with “Auto Immune Encephalitis”. I was so confused and hurt I sat up all night researching and he literally had every symptom. Every night I prayed as they tried the different treatments for God to just heal my baby & how bad I just wanted my baby back. After the second treatment he just wasn’t progressing, they moved us to ICU & sedated him so they could try the final treatment & after the 2nd dose he finally started to turn around. He woke up smiling and in the smallest voice he said “Hey Mommy” I cried a river bc for 3days all I wanted to hear was his voice tell me how much he loved me. Although he was turning around we still have a road to recovery, physical therapy , occupational therapy, just all around different things to get him back to himself. Considering that the encephalitis affected his brain but Thank God he never forgot who we were, but it did affect his walking, his speech, & some fine motor skills . All in all I have never left his side, I lost my job , & I’m on the verge of losing other things because I chose to be a mom over an employee. Im faced with rent, utilities ,& basic necessities. I barely get to see my other 2 kids besides FT considering they have school & they’re back at home with my mom all week & their other grandmother on the weekends . I’m not able to provide the things they need as well the basic necessities needed while I’m still here with my ButtaBall. Even once we’re released we’ll still need transportation getting to his weekly infusion & numerous appointments and scheduled monthly LeBonheur stays. We’ve been here at Le Bonheur for over a month now & I Thank God for giving the drs the knowledge & guiding the hands of them as they prepared multiple different procedures to give me my baby back ‼️