Walking Through the Fire
Aug 11, 2019 | by Nancy Newbrough
From M. G.: When we lived in Amarillo, an incredible couple with hearts of gold was in our small group at church. They have eight beautiful children and raised another young woman. Since early May, we and The Fellowship Prayer Team have been praying for their 12-year-old, Isaiah. Here is a summary of Isaiah’s story written by his dad:
On May 4, my wife and I were in Minneapolis celebrating our daughter’s 13th birthday. We received a call that Isaiah was having several major seizures, culminating in one seizure that, despite the medical team’s best efforts, proved unstoppable. Isaiah was heavily sedated and intubated.
As quickly as possible, we got back to Amarillo and learned his seizures had slowed, but not stopped. Maintaining his vitals was an increasingly difficult battle. It would be 36 hours before he stopped seizing. But his vitals remained volatile. A major call for prayer went out!
On May 8, we were flown to Cook Children’s Hospital in Fort Worth, a Level Four epilepsy center. For 28 days Isaiah was in Neuro ICU -- sedated, unconscious, and connected to several life-supporting machines. Regular seizures were battled every day. The search for answers proved to be elusive. Isaiah was not responding to treatment even through various doses of almost every seizure medication available were tried. He went through five rounds of plasmapheresis (a hypothermia treatment) and high-dose steroids. Nothing seemed to work, and time was running out!
We were warned that, if he survived (very uncertain at the time), he would likely have a tremendous amount of irreparable brain damage and we would likely never have our same son back! For us every minute of every day and night was lived on the edge. Isaiah had to be suctioned around the clock, rotated every two hours, rotated in and out of boots and leg wraps every four hours, and have constant bloodwork for testing.
Slowly, his vitals improved, but he was not responding to pain or any other cues. Then, on May 21, he smiled at us—the first sign of brain functionality we had seen. He gradually started waking up and on June 5, we left ICU. Unfortunately, his seizures returned a few days later, his vitals quickly crashed, and he was put back into a medically induced coma and readmitted to Neuro ICU for another ten days.
Again, his seizures proved nearly unstoppable. The search for answers continued as Isaiah and his medical team fought for his life through a lidocaine treatment, uninduced hypothermia (his body lost the ability to regulate his temperature temporarily), anesthesia, and a blood transfusion. All-in-all, Isaiah would spend over a month on a ventilator, two months on three different feeding tubes, and go through countless catheters, IVs, enemas, bag-suctionings, shots, etc.
After a series of genetic tests, Isaiah was found to have a couple of genetic abnormalities, including a very rare one. Prognosis: a terminal condition that, once triggered, causes extreme epilepsy leading to rapid neurological decline. There is no cure, no known treatment. Of the few known cases, there were no happy endings. Some died in infancy; others declined to a permanent vegetative state or mental capacity of a toddler. None went on to lead anything resembling a normal life. The news was devastating, and the outlook was grim.
We continued to do the only thing we knew – prayer and more prayer. And an army of intercessors lifted up our family! We all prayed for miracles!
And miracles came! Mountains moved! Tears flowed! After the longest night of our lives on June 21—a night when Isaiah was put under general anesthesia in a last-ditch effort to stop his seizures—Isaiah slowly woke up. First, he smiled again. Then, he began to swallow on his own … respond to pain … move his limbs … hold up his own head … use his fingers. Then, he started whispering … fighting through the pain of therapy … playing the piano … pulling himself up to a sitting position. Then, he began to walk! On August 1, he walked out of Cook Children’s Hospital, an absolute miracle!
Now that we are home, we continue to very much need your prayers. Officially, Isaiah’s diagnosis and prognosis have not changed. But our faith in miracles has! We continue to pray for and work toward full restoration through various therapies, medications and a new diet. With a written emergency medical plan, we are as ready as can be for our new normal. We are so grateful for those who prepared us to care for him at home. Praise God for home! There is no place like it!
Isaiah qualifies for Make-a-Wish and we have begun that process. What an amazing organization!
There are not words to thank you for lifting our family before the Lord through this! I wish I could hug all of you! Thank you for being the church as it was meant to be! Thank you for representing Jesus well! Thank you for walking with us through the fire! May God bless you mightily for what you have done for our family!
Now to him who is able to do immeasurably more than all we
ask or imagine, according to his power that is at work within us,
to him be glory in the church and in Christ Jesus throughout
all generations, for ever and ever! Amen!