Our story has a sad for us ending with Walker being called to heaven on April 20, 2016.
I have continued to write about our experiences and our journey through the past two years can be found on Walker’s caring bridge page. Here is how it all started:
On Thursday July 3rd 2014, our son Walker, had his first seizure. He had a mild fever on and off all week but no other symptoms.The fever would come back at night but was treated with Tylenol and Motrin and cool bathes. Each night the fever would subside and he would have a normal daywithout fever. On Thursday, we had been to Target and ran a few more errands with normal interactions. At about 12pm he was kneeling in his chair at the dining room table playing his legos like ususal. He was fine when I turned toget our lunch and then not even a minute later, he was having his first seizure. He was staring off into space and wouldn’t respond when I called his name.
Within a matter of seconds, he started to have drool fall from his lip to the table. Andy and I were both right there and knew something was seriously wrong. We picked up both kids and ran to the car to go the hospital. When we buckled him into his car seat, he was still staring off but his lips had started to turn blue. So, without delay, Andy pulled him from the seat and he threw up as soon as we got him back in arms. I called 911 and they sent an ambulance tothe house that would arrive 16 minutes later. After he threw up, he laid his head on daddy and still wasn’t responding but wasn’t in the daze either. He was exhausted and could barely open his eyes. A policeman arrived at the house towait for us until the EMS arrived what seemed like hours later.
Praise God for the policeman arriving and comforting us until the EMS got there, I wasstarting to freak out. Once the EMS arrived, they transported us to Richland Children’s Hospital where we waiting in the ER to see what had just happened.He was starting to respond again by this point but still very sleepy andgroggy. At about 3pm, he was back to his normal self and we were diagnosed withhaving a Febrile Seizure, a sudden spike in temperature can bring them on in kids and not totally crazy since he had a history of temp this week. We went home and had a normal afternoon. Hewent to bed and everything appeared to be fine. I was told to continually checkfor fever so I could give him Tylenol or motrin if it started to return. I checked his temp every hour until 1 am when I went to his room to give him Motrin just as a precautionary. He wouldn’t seem to wake up but was breathing and I gave him some and he took it without waking. I sat and watched him for about 5 minutes to see if there was any unusual behavior and all appeared okay.
About an hour later, I heard moaning coming from the hallway and ran out thereto see him laying face down on the carpet and drooling. I picked him up andturned on the light to see him start having another seizure. I called 911 while trying to comfort him for what was happening. He started staring off again butthis time had muscle contracting and then passed out. He started breathing shortly after and thenwent into what I know understand as the Post-Ictal period.
A period of time after a seizure of extreme exhaustion, walkers would tend to last about anhour. The EMS arrived about 6 minutesafter we called with the Fire Department arriving a minute beforehand. Our dear friend, Trevor, happened to be the first responder and a comforting face in sucha scary time. As soon as the EMS arrived, we were once again transported toRichland Children’s Hospital to the ER. Once we got there, about 30 minuteslater, he had another seizure but this one was more movement and also stopped breathing. He was given Ativan and then started another Post-Ictal period. We were admitted and transferred to the third floor and were there about 20 minutes and then started having another seizure. Then we were transferred tothe PICU to be under constant care. The next few days were full of MRIs, SpinalTaps, Lots of tests sent off and then just trying to stop the seizures. He would have hours without them and then every hour. It has been exhausting for our little man and started to have other side effects from the medicines they were giving to try and stop all this. The whole time we still don’t know what has caused him to be sick, they are just trying to stop the seizing long enough to figure it out. With almost all of the tests back negative and now him being in a medically induced coma, we are just waiting for him to rest. The Lord is in control and we know that His plan is mightier than ours and we wait expectantly for His healing.
After this initial update, we spent 3 weeks at Richland then were airlifted to Le Bonheur Hospital in Memphis, TN. We spent another 6 weeks there where they were able to successfully bring Walker out of the coma and save his life. We had many trials and wonderful experiences there and all are listed on our caringbridge site. We then transferred to CHOA at Scottish Rite in Atlanta to do 6 weeks of Inpatient Rehab Therapy. Once we got there, Walker’s seizures were somewhat under control but had lost most function. We were still very heavily medicated and unsure of what the future held for Walker. We kept pushing through and then were finally sent home on September 30th after 3 months in the hospital. We tried to adjust to living at home with a child who was still very sick and recovering from a major brain injury. We did 3 months outpatient rehab at the Children’s Hospital and then switched to In Home Therapy. This was going much better for Walker and we continued to do experimental therapies. We went to Duke to the Auto Immune Encephalitis Clinic to do therapies and infusions. After several more stents in the hospital , we went home on hospice in November of 2015.
Walker lost his battle against AutoImmune Encephalitis on April 20,2016. I continue writing to encourage others in their struggles and be transparent with the pain and beauty that goes with having a foot in heaven and one on earth.