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

One year.
One year since everything in our world was thrown on its head with one single phone call. One year since I learned the meaning of total dependence. One year since we went through a day without ALL the thoughts. One year of knowing how little control we have in life. One year of constant change and adaptation. One year of knowing God in a whole new way. And one year of life in a boy we had no guarantee we would bring home.

We were told that within a year of the onset of super refractory seizures the other kids with Isaiah's condition either passed away or were no longer themselves do to the damage suffered from seizing. One year and Isaiah, both mentally and physically, is still here. 

I have so many thoughts and feelings and it is hard to know what to share and what to keep to myself. 

Update first: Since the last post, the seizures have lessened and Isaiah has slept well. One large seizure. Only few small ones. His strength continues to increase. While the quarantine has stopped many things, his improvement isn't one of them. In fact, it has helped him tremendously to have extra time to run and play outside. So much free therapy. He helped shovel, haul, and unload soil for our garden beds. He helped unload a trailer load of boards. He rides his bike and walks around the neighborhood. He carries his laundry to the washer and then back to the bedroom. He does his school work and practices piano. Not one of those things could or would or should be happening--But God. 

Anyone who knew Isaiah prior to last May knows that the fear of being in front of people was debilitating. He would simply freeze. Once when he was about 4, he spent an entire quarter of a soccer game frozen on the mark where his coach had physically placed him when he wouldn't walk onto the field. The ball literally rolled and sat on his foot and Isaiah refused to move a muscle. Another kid kicked the ball off of his foot and Isaiah never even flinched. At the end of the quarter, the coach carried him back off of the field. Isaiah hung up his cleats after that grand finale. After being in the hospital, Isaiah has been more bold than ever in his life. He went to speak to a women's small group to tell them "God healed me". He chose a picture of him in ICU full of tubes and wires and made it into a poster. On the other side he had me write the words "God saved my life". He proudly held his poster in the God of Miracles Christmas program in which the kids made posters to tell of the wonders God had done in their lives. He spoke in front of his class to tell them about God's mercy. He struggles with getting words out, he stutters and stumbles, and is still very nervous to be in front of people, but he is willing and that is huge. In one year I have seen my little mime become an ambassador for Jesus. 

I have also seen how each of my other children's lives have changed. Faith and Addie are no longer children when it comes to the naivete of feeling invincible. They understand so well the fragile nature of life and the lack of control we have in it. All of the kids have learned how to walk through everyday not knowing what it holds. They have learned to plow through anxiety, fear, loneliness, broken heartedness, joy, healing, and how to adapt to all that comes with each of those things. They have learned a deep empathy for people who are hurting and have developed the coping mechanism of serving others to work through their own emotions. Some days are hard. Some days are miserable. Some days we give up by noon and just try to survive until bedtime. Some days are full of the most immeasurable joy. What's really amazing is that whatever the day looks like, we get to do it as a whole family and for that we are all eternally grateful. One year ago I didn't know if that would be possible. I watched as the doctors and nurses fought to keep our son alive more that once in that hospital. I watched as God breathed life back into him. And I watched as God slowly restored Isaiah, Josh, the other kids, and me one day at a time, not into what we were, but into what He wanted us to be today. I saw this post by Dan Bouchelle and feel that it perfectly captures where we are. "I am ok, but I am not at my best. I am often confused and uncertain. I have a lot of brain fog. I am too afraid to let myself face my fears about what is coming. I trust God, but I don't assume that means that I or those I love will be protected from great loss of suffering. We are not special. The way of the cross is not a 'victory march' but  a 'broken hallelujah'. Like Jacob, we walk with a limp because the God we trust wounds us in the battle of wills. He values something more than our comfort. Yet, I trust his ultimate goodness and mercy for life beyond whatever comes next. So I get up and go through my day with a cautious confidence and try to make my life matter to bless others. That is what faith means for me."

One year. I can't even wrap my mind around the significance of that. But God.
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