#HopeForHadley

HADLEY'S STORY:  On October 16, 2018, Hadley was diagnosed with croup - a respiratory virus that she has had at least once before. She was taken to Baptist East pediatric ER that evening to get a breathing treatment which was the only treatment she had previously when having croup and it took care of it. After one breathing treatment, X-rays of throat and lungs, round of steroids and 2 hour watch - we were released to go home. The next morning, October 17th, she still didn't sound great so I took her to our pediatrician. He checked blood to make sure no other infection, checked for strep and sent us home with a prescription of steroids to give her twice a day. It was a later afternoon appointment so we came home and she had one dose of steroids at 5:00 pm. She had still been eating and drinking that day and I had her in the bathroom and steamed up the shower like they always say to do. She took a long nap and seemed to be doing ok. She has had two febrile seizures previously which are just caused by a quick change in your body temperature so when she is sick, she would get Tylenol and Motrin alternately to keep her temp down.  Around 8:45-9 on October 17th, she had what we thought was a febrile seizure.  She passed out on the way to the hospital. She had quit breathing and her heart rate was gone for around 20 minutes while they continued to work on her.   Finally, a heart rate was back and they had a breathing tube in her. We were transferred to LeBonheur later that night and they immediately hooked her up to 5 antibiotics to treat any infection that could have caused this, I think about three or four anti-seizure meds and heavy sedation and hooked her up to an EEG. Within 20 minutes, the seizures had stopped and she was sleeping peacefully. EEG determined she was having multiple seizures. She was diagnosed with anoxic brain injury. The next couple of weeks were almost a blur with so many doctors in and out and waiting on her to open her eyes. We spent 15 days in the PICU and they were able to remove the breathing tube on day 15.  She was later diagnosed with laryngomalacia  and we believe that combined with croup caused her to go into respiratory arrest. Around three months post injury, she began having multiple seizures and was also diagnosed with Lennox-Gasteaut (rare disorder that causes you to have multiple types of seizures) and medications don't always work.  She was having over 20 seizures an hour every day but those have been reduced to almost none.  Since her injury, she has had physical therapy, occupational therapy, speech therapy, botox injections, acupuncture, three week intensive physical therapy, and Hyperbaric Oxygen Therapy.  She can move extremities on her own, passed swallow studies, she has much better head control, reaching at times for things, more vocal when things bother her and cooing like a newborn, mouth is more closed, not much need for suctioning. Basically, she has progressed so much but we don't want to stop.  We don't want to stop fighting for her.  We want her back completely and better than ever.  There are tons of things out there for us to try but most are not covered by insurance and all are not in Memphis.  We thank you all for the support you have already given to us.  
 
#HopeforHadley

#PRAYforHadley