Connor's Paralysis Recovery for a Year
GoFundMe: https://gofund.me/b85e7c0f
Cash App: $morganbaker93
CONNORS STORY:
August 16th Connor had a normal day went to school went to daycare came home we were all eating Little Caesars Pizza for a beginning of a good week as a family and within an hour he started vomiting non stop and complaining of chest pain. Me, being a mom and a CNA thought maybe it was just gas from all the pizza. so I had him lay down for the night until the vomiting stopped and hope that in the morning he would be better. Wrong. the next morning he said he still felt sick so I let him stay home from school with stepdad, Chance, and about around noon whenever Chance went to check on him and see if he was okay Connor was crying because he kept needing to pee and he couldn't get up to go to the bathroom. He kept saying his feet felt like they were shrinking, and we immediately were getting more worried. I got off of work around 6 got home tried to set him up and his whole torso fell to the ground he couldn't even hold his upper body up anymore at this point. We both carried him to the car and I immediately got myself to the Bartlesville ER. (6:30 pm August 17th)
Once we were in the ER, they seen he had no control from his upper chest down but he was still able to lift up his arms and fingers and talk. we started running all sorts of blood tests all sorts of x-rays CAT scan and they could not find anything that was going on. Around 3 am after they let him rest for a couple of hours, he woke up and could no longer talk or move his arms, and his oxygen went solo that they put him on an oxygen tank. They immediately wanted him in Tulsa at St. John. We finally got there around 4:30 am and within the first 10 minutes of being there, they intubated him because he could no longer breathe on his own, and his left lung had collapsed.
After that, we were doing multiple tests to see what was going on. We went through multiple different diagnosis with the same symptoms, even did an MRI and a cat-scan. Then at the time of they thought he had had a stroke in his brain. they mentioned he might be paralyzed from the neck down for the rest of his life because that's how serious a stroke is especially in children. The doctors were so confused and dumbfounded on what was going on with him they said they have never seen anything this rare happen so they wanted him at the Oklahoma Children's Hospital in OKC. they got him a helicopter ride to OKC on August 22nd.
Ever since we arrived at the Oklahoma Children's Hospital, he's had the utmost amazing care and kind-hearted nurses to take care of him. He finally had a team of specialist and experienced neurologist that I've seen more of these cases who has been taking care of him and everything he's needed since being here. they gave him another MRI to try and rule out the stroke which they did and seen that it was inflammation in the spine (ADEM) that was causing the paralysis. They did multiple treatments that included plasmapheresis, IVIG, steroids, antibiotics, the works. Still though the most movement we were getting is just a little bit of shoulder raises, and head movements!! (As of 09/23/2021)!
Fast forward to 10/15/2021, NOW:
Connor has a Tracheostomy ( better breathing, no tube in the mouth anymore ) and a G.I. Tube ( for medicines to be given immediately into his stomach ), and as of 10/05/2021, HE'S BEEN APPROVED FOR REGULAR FOOD AGAIN!! We are so excited for him to be able to have a simple cheeseburger and fries again, it's a blessing! He is also getting to start TRIAL BREATHING WITHOUT THE VENT!!! So far, he's able to do 15 minutes on the vent without de-stating, BUT IT'S A START!! Also, we HAVE MOVEMENT! Connor is using his right arm to lift and touch his own face again, and he's LOVING it! We can move our left elbow up and down, but still no grasp in either hands, and we have twitching in the legs, but mainly without purposely doing it, but IT'S SOMETHING! We are very hopefully with this new movement we have, and we are working harder each and every day on getting further and closer to walking one day again! No, we don't know if he'll be in a wheelchair or walking again all we can do is keep praying and supporting Connor because he needs all the positivity he can get!!
The next step in our lives now is getting a home in OKC, ASAP, that way we can be closer to Connor during all this, and so we don't all have to be apart during all this, cause right now, I'm only seeing my other 4 kids on the weekends, when I'm not with Connor during the week working full time at Dean McGee Eye Institute! We have been looking for weeks for a 4 bed, but still on the search!
The Diagnosis for Connor's Paralysis:
ADEM - Acute Disseminated Encephalomyelitis
ADEM is a type of encephalitis caused by an inflammatory reaction in the brain and, sometimes, the spinal cord, which mainly affects the nerves in the ‘white matter’ of the brain. Connor's was inflammation in his spine, which is causing temporary to permanent paralysis. Up to 75% of cases have a complete recovery. However the time scale for recovery varies in individual cases. The nervous system is often slow to repair itself, and it may take weeks, or sometimes months, to make a recovery. Connor may be in hospital / rehab facility for a few months for rehabilitation.
Please everyone copy and paste the link below if you have anymore questions on his diagnosis and recovery!!
"Acute Disseminated Encephalomyelitis (ADEM) | Symptoms & Causes | Boston Children's Hospital"
https://www.childrenshospital.org/conditions-and-treatments/conditions/a/acute-disseminated-encephalomyelitis-adem/symptoms-and-causes
Facebook Fundraiser link:
Fox23 News story links :
https://www.fox23.com/news/video-bartlesville-child-paralyzed-within-few-hours-family-asks-help/c3d73fdb-401a-41a4-8026-217fac2034d1/?fbclid=IwAR2H9e19B_qeKnoWYyRMq2xjQbvM2Lz_1PUDVipxdMjIJopHA5ZPtcHsxgY
https://www.fox23.com/news/local/bartlesville-boy-battling-rare-illness-sees-improvements-health/GMIRFKW5DJCPHIX67DDXBULC5M/?fbclid=IwAR0rhsDdlYnRejoKSmRl7JMHCmyBubD_ER9lrVwwcGfGRLL0jkRGH_M1lsk
