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

It's been awhile since my last update. Since then, well, the entire world has changed. What a mess. I imagine many of you are feeling the same way we are...like we're awkwardly stumbling through the pages of future history books. Some days we overreact to reality and make mistakes. Other days we under-react to reality and make mistakes. Most days we're trying to teach our kids to put their hope in things eternal rather than things temporal...and fighting a battle to teach ourselves the same. Surreal. That said, you all have been so wonderful to pray for us for almost a year now. With all that is going on, we would be honored to return the favor. Let us know if you have any specific prayer requests and we will pray over them as a family.

Home Update

As for Isaiah and our family, that amazing boy of ours is still very much a walking miracle. Prior to this week, we made it almost a month between seizures--the longest seizure-free span that I can remember. What a gift. Additionally, even though his seizures still require emergency medication, he is still coming out of them (and that is very much a miracle). Also, he seems to be coming out of his seizures a little faster and a little stronger than he was in January or February. This is all very encouraging. Thank you for continuing to pray. God continues to walk with our family.

Doctor Update

At the beginning of March, we made the trek to Fort Worth to meet with Isaiah's geneticist. A few additional tests confirmed much of what we already knew about his diagnosis. It is a very, very rare condition. Also, while it is a genetic mutation, it appears to be a new mutation in Isaiah and not something inherited from Careese and me (i.e. none of our other children have it, which is really good news.) Additionally, Isaiah does have another genetic abnormality that was inherited from me. I asked if that meant Isaiah was destined to a life of rugged good looks and intellectual prowess. Apparently, it does not. Anyhow, we didn't really learn much that we didn't already know. But, we were reminded of just how miraculous his progress has been. Bottom line: he shouldn't be alive, let alone walking, talking, learning, and progressing. Yet, here we are. Thankful.

Therapy Update

As you might imagine, we've been under a fairly strict quarantine around here. So, Isaiah has been working on his various therapy routines at home. While the progress is still very gradual, we are still seeing progress; and, that makes us smile. Worth noting: we have a newfound appreciation for those of you out there who also have immunocompromised loved ones. Times like this are nerve-racking and full of difficult decisions. Again, let us know if we can pray for you.

Make-A-Wish Update

Isaiah's geneticist mentioned that she was helping move along the process, which is wonderful. Other than that, we don't have any other updates yet. All this COVID-19 stuff has understandably delayed the process.

Thank you.

All in all, the Wood family is doing well. We're trying to make the most of our quarantine time and trying to follow the advice of Philippians 4:8. We have much to be thankful for. Thanks for joining us on this journey. Thank you for praying.

A couple other items of note:

1) I recently typed up a few thoughts on grief, suffering, and joy....specifically, what we've learned about those things through all of this. Here are those thoughts: http://www.joshwoodtx.com/grief-and-suffering/

2) I’ve talked a lot about how thankful we are for Cook Children's Hospital. I don’t know that they could have taken better care of our family this past year. In addition to working tirelessly to save our son’s life, their Child Life team provided near-constant opportunities for distraction for our other kids. They were nothing short of amazing. The video attached is one such distraction—a little movie produced by the wonderful people of Cook Children’s Child Life Zone (written and performed by our kids). Enjoy.

3) I attached a few photos of a family trip we took to San Antonio just before COVID-19 changed the world.
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