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 Josh Wood

*warning: long post ahead*

2019 was the most difficult year of our lives. We spent a good chunk of it on edge, in tears, and exhausted in every way. Not a single member of our family will ever be the same. Our family as a whole will never be the same. To say that we're anxious for 2019 to be in the rear-view mirror is an understatement. Don't get me wrong. We have so much to be thankful for. Isaiah is alive, and through it all we have a much deeper appreciation for family, friends, humanity, medical professionals, Jesus, and even the Internet. Additionally, we found the wisdom of the Bible to be a battle-tested kind of way. It promised that there is a way to have peace and joy in the midst of excruciating trial. And we found that promise to be true. To be sure, it isn't an easy peace or an easy joy, but it is a "give you strength to survive another 30 minutes and a hope to endure no matter the outcome" type of peace and joy.
As we look to the year ahead, here's where we're at:
Isaiah continues to gradually improve. We have had some scares over the past month. Our doctors warned us that, if/when he caught any sort of illness, his immune system's response to said illness would likely cause him serious issues...including a decent possibility of slipping back into super refractory seizures and being flown back to Cook's. He has battled some illness twice in the past month. Both instances were quite challenging. In addition to intermittently losing his ability to walk and talk, we had to use his emergency medication a few times to stop seizures. By the grace of God, his seizures did stop, he regained his ability to walk and talk, and we avoided the hospital. As of now, he seems to have recovered from both illnesses. Praise God. If you've followed along, it will be no surprise that his attitude has continued to be remarkable. I've never met a kid who takes things in stride like he does.

Perhaps the best way to explain where we're at is by telling you the story of our Christmas this year. So, here you go.
Like everyone else, our family has its Christmas traditions. Here's a brief synopsis of our typical Christmas Eve night:

The night of Christmas Eve has been the same for as long as I can remember. We attend a candlelight Christmas Eve service. Then, we drive around Amarillo looking at Christmas lights whilst blaring Christmas music...just a little bit louder than is socially acceptable. After arriving back at home, all of our kids drag their mattresses off of their bed frames and onto the floor of Faith's bedroom, where they will all spend the night. Careese reads a few Christmas stories, and then we all pray together. After that, we give everyone hugs, and it's off to a delightfully terrible night of sleep for everyone. After a couple of hours of anxious resistance, everyone begrudgingly falls asleep. This allows Careese and I a narrow window of opportunity in which to set out gifts. Then, somewhere between 4am and 5:30am, the first riser awakens and quickly, violently, loudly, and efficiently wakes up the brothers and sisters."WAKE UP WAKE UP WAKE UP WAKE UP WAKE UP GET UP! IT'S CHRISTMAS!" Approximately 0.78 seconds after that, a thundering herd of children stampedes into our bedroom, erupts into a chorus of "IT'S CHRISTMAS! IT'S CHRISTMAS!", and jubilantly jumps up and down on our bed until we surrender and agree to lead the happy mob into the living room. From there, all the kids proceed up the stairs to wake up Mary in an even more chaotic fashion than they awakened Careese and I. After that, the kids--with a very sleepy Mary in tow--merrily bound back down the stairs to the living room where stockings and gifts await.

That has more-or-less been our pre-present-opening routine for years. Well, that's not entirely true. A couple years ago we instituted a rule: the kids had to wait until 6am to wake us up. Other than that Christmas-spirit-saving amendment, our routine has been the same. And, every year it has been wonderful. Absolutely wonderful.
We knew that this year would be a little different. Our routine had to be modified a bit. We couldn't stay out nearly as late admiring Christmas lights, and we had to play our music a good bit softer. When we arrived back at home, everyone piled into Faith's room earlier than normal. Isaiah asked if he would be able to join his brothers and sisters for "just this one night" rather than spending the night where he has since we returned from the hospital: on a twin bed in our bedroom. We cried when we had to tell him "no." His shoulders and entire countenance dropped. It was the saddest we have seen him since we arrived back in Amarillo. Unfortunately, we had no choice. The night time is just too precarious to risk it. So, Isaiah stayed in Faith's room with his siblings for stories and prayers, but we put him to bed in his bed. His brothers and sisters shared his and our discouragement. After taking Isaiah to bed, we went back to Faith's room and explained to his siblings that the Christmas morning routine would have to be different this year. Isaiah has a number of things that trigger seizures more than others, but being woken up from sleep is his biggest one. There could be no stampeding down the hall and waking us up. Not this year. The kids would need to wait until Isaiah woke up to start the Christmas fun.
After we set our ground rules, everyone slowly drifted off to sleep. We heard them wake up around 5am. Not good. It would likely be at least another two hours before Isaiah woke up. By that time, our four and six-year-old may have imploded...overpowered us, opened all the presents, and eaten all the candy. We weren't sure what to do. We decided to wait until 6am and see if Isaiah was showing any signs of waking up. 6am came. Sound asleep. 6:30am passed. Isaiah hadn't budged. I imagined it wouldn't be long before chaos ensued. But, it didn't. Instead, we heard singing. Our kids stayed in their room, sat on their pallet of mattresses, and sang Christmas songs together. I'm sure there was still a lot of impatience among the littlest our our kids, but we couldn't tell. We only heard singing, giggling, and laughter. Well...and the occasional hopeful shriek of, "I THINK HE'S AWAKE! I THINK I HEAR THEM COMING!" followed by 10 seconds of anticipatory silence followed by more singing.
Isaiah finally woke up at 7:45am. Most mornings, it takes a little time for his twitching to subside. This morning, there was no twitching. He checked the clock (as he always does), got up, walked over to his momma, gave her a big hug, and said, "Merry Christmas, Momma." That hug lasted a just a little longer than he wanted it to as we cried about a moment that might not have been...a moment that, medically-speaking, shouldn't have been. Then, Isaiah led us down the hallway and opened the door to the most excited siblings the world has ever seen. As if God had arranged the timing, Mary and Luke arrived at the door (they had just finished their night shift at work) just as the kids were all awake and ready to start the Christmas celebration (video attached).
And it was wonderful. Absolutely wonderful.
That little snapshot of our life is a pretty good picture of our world as we enter 2020. All of our routines are modified. Our nights are unpredictable. Many are fine, but we wake up at every sound of stirring and sporadically spend anxious minutes staring at Isaiah's face, emergency meds in hand, praying for twitching to subside. Our "new normal" equals a lot of sleepiness, a lot of improvisational parenting, and a lot of all of our kids blessing us with absolutely incredible attitudes in the midst of our trials and their own. We are so very fortunate. Christmas 2019 was such a blessed end to such a challenging year. So, that's why I tell this story. It's a pretty decent picture of our family at the moment. Additionally, I feel as though you deserve to hear a bit more detail of the absolute joy you helped bring into our family. You've prayed for us for so many months. You deserve to read a story or two about how God answered your prayer. Thank you.
As we enter 2020, we remain overwhelmingly thankful for what God has given us. We get to enter it together, as a family. That's a gift I've definitely taken for granted in years past. As you pray for us this new year, here are our requests:
  • We are beginning the process of weaning Isaiah off of one or two more of his medications. This continues to be a very delicate process. Please pray that it goes smoothly. He is making progress in therapy, which he attends twice per week. He isn't yet able, but his therapists are working on jumping...which tells us just how far he has come. Please pray for his continued progress.
  • Isaiah's siblings are gradually improving as well, but it is still a long road ahead. Three months in the hospital was tough on them...especially our older kids. They saw things in the hospital no sibling should ever have to witness. They were strong in ways no sibling should ever have to be strong. They held Isaiah's hand as his system started shutting down. They watched him slip into and out of two comas. They witnessed the struggles that come with week after week on ventilators, feeding tubes, catheters, and IVs. They watched their parents fight and pray through nearly unbearable grief. It is a nightmare they cannot forget. Please pray for their peace, comfort, and relationship with the God who is bringing us all through this.
  • Careese and I continue to improve also. Overall, we feel undeservedly blessed. However, our day-to-day life can be challenging as Isaiah requires a fairly strict routine and near-constant supervision. We have a hard time leaving him, which means that date nights are few and far between. Please continue to pray for our strength and endurance.
As always, thank you for praying along with us. We're nervous, but excited to see what 2020 brings us. We pray blessings over your 2020 as well. Thank you for playing a huge role in helping us survive 2019. Here's to 2020.
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