Isaiah’s Story

Site created on May 13, 2019

Thank you for visiting Isaiah's page. I will attempt to sum up 100+ posts below. There is very little chance that I'll do it well. But, here we go...

Isaiah had a number of severe, uncontrollable seizures early Saturday morning, May 4. He was taken by ambulance to pediatric ICU at BSA Hospital in Amarillo where they worked to keep him alive, determine the cause, and control the seizures.

On Wednesday, May 8, he was flown to Cook Children's Hospital in Fort Worth. He remained in Neuro ICU on a ventilator, intubated, and heavily sedated. For two months, every attempt to decrease and/or stop his sedation medication was met with a return of seizure activity. From what I can remember, we personally spoke with doctors from Pediatric ICU, Neurology, Rheumatology, Nephrology, Infectious Disease, Immunology, Endocrinology, Pulmonology, Palliative Care, and Hematology since our arrival at Cook's. In addition to countless blood draws, IVs, tests, EKGs, x-rays, and constant EEG monitoring, he has endured three spinal taps, two CT scans,  four brain MRIs, two full-body MRIs, three days of hypothermia,  two high-dose steroid treatments, three feeding tubes, a blood transfusion,  four failed attempts at burst suppression, five rounds of plasmapheresis, 37 days on a ventilator, 41 days in ICU, and 89 days total in the hospital. We came very, very close to losing him more times that I can count.

Our journey has been very long. After a month in a medically-induced coma, Isaiah came out unable to swallow, move, or communicate. After a few days of slowly regaining the ability to swallow, he smiled at our voice. It was the first sign we'd had in over a month that Isaiah was still "in there." I can't describe the emotion of that moment. Then, very slowly but surely, he started to move his eyes to communicate and to move arms slightly. Then, abruptly and awfully, he slipped back into status epilepticus and was immediately intubated and induced into a coma. After coming out of a coma a second time (weeks later), he was again unable to swallow, communicate, or move.

At about this time, we finally received a diagnosis. (His case was very much a mystery until the last few weeks of our stay at Cook's.) In addition to a number of other issues (including encephalopathy), a genome sequencing revealed a mutation in his DNM1L gene that ultimately triggers super-refractory status epilepticus.  This diagnosis is terminal and non-treatable.  It is very, very rare, and there is no known cure. We've read all the case studies we could get our hands on regarding this genetic mutation. None of the cases were as fortunate as we were. Isaiah shouldn't be alive, but God.

Over the course of the next several weeks, Isaiah defied all odds and expectations. He began to swallow again. Then, to move again. Then, to smile again. Then, to use his eyes to communicate (albeit with a 30 second - 1 minute delay). Then, to hold his head up. Then, to whisper. Then, to push himself through hours of physical, occupational, and speech therapy to re-learn how to sit up, communicate, use a wheelchair, etc. His attitude remained absolutely remarkable throughout. He did not complain. He did not gripe. He tackled each new task with a smile on his face...which brought a very teary smile to his Momma and Daddy's faces at each little victory. Eventually, Isaiah took his first steps with a walker. Then, on August 1, Isaiah mustered all of his strength to take the happiest steps our family had taken in months, steps that took him out the doors of Cook Children's Hospital. 

Now that we are back at home, we remain very much in need of prayer. His diagnosis and prognosis is still scary. Our "new normal" involves a lot of medications, therapies, visits with doctors, and a lot of time emotionally on edge.  Thank you for praying and joining us on this journey. Your presence here and your prayers bless our family more than you know.

Newest Update

Journal entry by Careese Wood

I have been asked a lot lately, "How is Isaiah? He's all better, right?"

I usually stumble over my words awkwardly as I try to decide which direction to go with my answer. Do I answer in total honesty with the many necessary words that typically leave the recipient of said words staring open mouthed and silent? Or do I go with "He's doing pretty good. You?" which really doesn't really answer the question, but requires no energy. 

As I watch him sleep and ponder the amazing miracle next to me, I have decided to answer the question in a real way. In a way that takes more energy than I often have for an answer on the street or in the store. 

Isaiah is alive and growing and happy . Those words are a miracle.  Many people have asked if the diagnosis has changed or if it was a mistake.  The diagnosis we received in 2019, DNM1L genetic mutation, has not changed. It won't change. It isn't a virus or bacteria or something that can be surgically removed. His genetic code is abnormal causing his mitochondria to not process energy properly. This is so deeply important to his story because it means that medicine can't change it. God decided that didn't matter and has allowed him to see 718 days since we left the hospital. This also means that "better" is a word that can take on many meanings. He is better than he was. He is better than the doctors thought he would be. He has been healed in many ways. But we are still praying and begging for "better" to mean that there is complete and total healing that removes his body's attempts to self-destruct. 

He is growing. His condition makes it hard for Isaiah to put on weight and grow properly. He left the hospital 12 years old and 58 pounds. He just celebrated his 14th birthday and is 80 pounds. He has put on 50% of his previous weight in two years. That is pretty fantastic! He is getting taller and stronger. Even growing has its struggles for him though. Isaiah's bones are growing faster than his muscles causing his muscles to be over stretched and too tight. This causes his legs to stay partially bent forcing him to hunch. He is now in leg braces attempting to straighten him out. We have done two rounds of Botox on his legs, 3 shots in each leg each round, that should loosen the muscles. It also makes it harder to walk and causes him to fall more frequently as his body adjusts. As we try to build strength in his core and legs, the Botox adds a new layer of challenge. If we don't do the Botox, his muscles could continue to shorten requiring a surgery to cut and lengthen them. So many less than ideal choices. 

But he is happy. Isaiah smiles and hugs more than any kid I know. His sisters swear that when I turn my back he turns into a sister antagonizing monster, but how could a face like that possibly do such a thing?! He loves to play catch and kickball and board games. It doesn't faze him that he is slower than the others or less coordinated. He laughs and trash talks with the rest of them. He still struggles with speech, the area of his brain that took the biggest hit, but what he can't say with his words he says with his eyes. 

As far as seizures go, June was his best month yet with only 8 seizures. We usually are at 15-20 seizures a month. So far in July, he has had four. I am praying that God is moving us slowly into that desired "better".  Isaiah still sleeps in our room on a mattress beside our bed. To answer the typical next question, no, we don't have a way to move him out and still be aware of him having a seizure. The alarms, pads, dogs, etc. that are designed to alert you during a seizure don't work for him for a variety of reasons. We still wake up almost hourly to check on him even if he isn't seizing. When he does, we are at his bedside in seconds, timing them to make sure he comes out of it before the dreaded five minute mark and assessing when or if we need to administer rescue meds. Praise God, he has come out of them all on his own. If he has received rescue meds it has been to stop him from rolling into another one as they tend to build on each other. 

So there it is. That's how Isaiah is doing. Now you see why it is awkward to answer in Walmart or with all the kids around. I would love for you to join us in praying for complete healing and in praising for the overwhelming mercy and healing God has already given. We are so blessed to know that there is an army of people who continue to fight on their knees for Isaiah. 

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