Isaiah’s Story

Site created on May 13, 2019

(Summary as of February 16, 2022)

Developmentally, Isaiah progressed normally for most of his childhood—he had no major illnesses, no hospitalizations, and gave us no real cause for concern. It wasn’t until he was 10-years-old that a seizure blindsided us. After that one seizure, he recovered after an hour or two; but we spent three days in the hospital for observation. Unable to find anything wrong after a number of tests, we received a “generalized epilepsy” diagnosis, then went home and resumed normal life. For a little over a year, he was seizure-free and still progressing well through school. We did notice some slight delays with his fine motor skills as well as in school, but no major cause for alarm. Towards the end of 2018 and beginning of 2019, something seemed slightly off. It became more and more challenging for him to stay focused on any task; and, he would periodically tell us that his legs felt funny. Sometimes, he would stumble and have trouble walking for a minute or two. However, those episodes were few and far between. He had one more seizure toward the end of 2018; but, again, medical tests proved inconclusive.

Then, in May of 2019, our world changed. Isaiah had a number of severe, uncontrollable seizures early Saturday morning, May 4, 2019. 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. He was ultimately put into a coma when seizures did not stop. Once stabilized, he was flown to Cook Children’s Hospital. There we remained for three months, and there we tried virtually everything imaginable to control his seizures. 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 after our arrival at Cook's. In addition to countless blood draws, IVs, tests, EKGs, x-rays, and constant EEG monitoring, he 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, and 37 days on a ventilator. By the grace of God, Isaiah slowly made miraculous progress (especially given his eventual diagnosis, which I’ll get into soon). He truly defied all odds and expectations as he faced the task of having to relearn basically everything. 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, and to use a wheelchair. 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, 2019, 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. All told in 2019, he spent 41 days in ICU and 89 days total in the hospital.

Though he underwent every test imaginable, it wasn’t until the last few weeks of our time at Cook Children’s in 2019 that we finally received a diagnosis. His case was very much a mystery until that time. A full 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 (as far as we know, there are only 13 other known cases). None of the cases were as fortunate as we were. Isaiah shouldn't be alive, but God was gracious to us.

Our days never looked the same after 2019, but “grateful” doesn’t begin to describe how we felt about every single second of every single one of them. When we left the hospital, Isaiah was on a special diet, on a number of meds, using either a walker or a wheelchair, and could no longer be left unattended. Progress over the next two years was slow but noticeable. While he had leg braces, he stopped using the walker and wheelchair almost entirely. He made progress in school and speech, and was able to return to his beloved school for a few hours one day per week—where he was watched over by the greatest teachers we could have ever asked for. Though our “new normal” brought significant challenges (including an average of 3-5 seizures per week), it also brought us unspeakable joy, thankfulness, and a deeper appreciation for the God who walked with us through the fire.

Then, at the end of November 2021, what started out as regular facial twitching escalated into unrelenting seizures for hours on end. We didn’t know it at the time, but initial tests at the hospital revealed that he had caught a pretty bad case of RSV—which apparently triggered his condition. Since then, we’ve faced a similar battle to the one we faced in 2019. Every attempt to decrease medication or to increase his various physical, occupational, or speech therapies has been met with a return of seizure activity. I need to describe “seizure activity”, because that varies from person to person. Some of Isaiah’s seizures are short and less severe (only affecting his face). These typically last anywhere from 5 to 30 seconds. He’s had hundreds of these in the hospital. Some of his seizures are more severe and affect his whole body. These usually last anywhere from 30 seconds to several minutes. He has had hundreds of these seizures in the hospital as well. At one point, Isaiah had three hours of smaller seizures that progressed into six hours of big seizures…a total of nearly nine hours straight with only 5 to 30 second breaks in between. Careese and I held his hand the entire time. In hindsight, I think he was holding our hands as we cried through it all.

During this stay in the hospital (since November 22, 2021), he has been under general anesthesia twice to bring him out of status epilepticus, has been intubated and extubated at least three times, has had a vagus nerve stimulator surgically implanted, now has a tracheostomy and G-button; and, he remains on a litany of medications to keep him stable. While he remains unable to move (we have seen very sporadic intentional movement of arms and legs, but not much), he is currently able to track with his eyes and smile at us…which he does at just the right times.

I could sugar-coat it, but I won’t. Pretty much every single day has been beyond our worst nightmare. We have very nearly lost our son more times than we can count. Watching our then 10-year-old endure a single, solitary seizure all those years ago nearly broke us. Watching our now 14-year-old endure hundreds of seizures has left us beyond broken. Watching our whole family grieve is beyond heartbreaking. Yet, God continues to carry our whole family through this mess—via a variety of means—every single day. Often, it’s through our son’s smile in the face of abject adversity. Often, it’s through an army of wonderful supporters reading our updates and praying us through. Often, it’s through verses, songs, sermons, etc. We feel the total weight of 2 Corinthians 4:16: “Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” Each day seems more impossible to face than the last, but God.

God is good all the time. Not because he prevents us from suffering or stops our pain and suffering when we declare that he should. He is good, well, for one, because he is God and gets to define what “good” is. But, also he has a redemption plan for our brokenness…and not just our brokenness but all human brokenness…and he has promised to carry us through until that day—a day when “Everything sad is going to come untrue, and it will somehow be greater for having once been broken and lost.” (Tim Keller).

In the face of our personal trial, we can attest that God makes good on that promise—the promise to carry us through this momentary breath of a life no matter the depth of the suffering on this earth and no matter how seemingly impossible the trials we all face. Day after day after day. God has been good to us.

Thank you for praying for the Wood family as we press on. Truly.

Newest Update

Journal entry by Josh Wood

After four days in the ICU, we made it home from the hospital yesterday afternoon. Isaiah’s fever is gone and his heart rate has returned to normal. Seizures are still very frequent while he is awake, but better than a few days ago. Praise God for that. It seems as though lingering E. Coli was the culprit. Please pray that our current antibiotics will rid us of the evil that is a UTI.

March 7 marked one year since we left Cook Children’s Hospital. Surreal. On March 7, 2022, Careese and I carried Isaiah into our home and frantically connected all of his medical equipment. I spent the entire first week home losing my ever-loving mind. We had worked hard in the hospital to learn as much as we could, but there really wasn’t a way to be prepared for our “new normal.” Isaiah had to be rotated every 2 hours around the clock to prevent bed sores and repositioned after every cough or seizure to prevent other injuries. His muscles had to be stretched regularly to prevent stiffness and cramps. His feeds had to be mixed and administered 4 times per day. His litany of meds had to be administered at the right times. His airway had to be kept clear via a suction machine and regular trach changes. His trach and g-button sites had to be kept as clean and sterile as possible. He had to remain connected to a pulse/oxygen monitor at all times as he wasn’t able to communicate if he was in pain or having trouble breathing. On top of this, everything had to be done as delicately as possible to keep seizures to a minimum. We were battling 20-40 seizures per day, and keeping Isaiah’s airway clear was a constant challenge. The suction machine was running more than it wasn’t. Careese or I one basically sat by Isaiah’s bed 24/7.

We both had our moments, but I freaked out…a lot. There were just so many emergency situations. Isaiah’s trach would clog, and he would turn blue. A combination of suctioning, changing his trach, and giving him oxygen had to be done very, very quickly for him to survive. There were no doctors or nurses there for backup. I can’t tell you the number of times I unproductively and frantically paced the room as if my feet were on fire while Careese sprang into superhero mode, calmly and methodically saving Isaiah’s life. Thank God for Careese. It is not an exaggeration to say that she has singlehandedly saved his life dozens of times this past year. I found this gif that pretty much summed up our 2 different reactions to emergencies:

If you’ve followed our journey, you know that, unfortunately, Isaiah’s condition is largely unchanged. Each and every day continues to be a battle to maintain stability. Don’t get me wrong, we have seen periodic progress many times only to have the progress ripped away by illness of some sort…most recently a UTI and covid. As we continue to exhaustedly put one foot in front of the other as our struggle drags on, we do continue to count our blessings. Day after day the blessings do come. Isaiah continues to smile in the face of unimaginable adversity. Our kids continue to amaze us. Our parents continue to be incredible. My aunt and uncle have been a godsend and provided much needed help around the house. Our medical insurance keeps paying an obscene amount of bills. Our nurse values and fights for Isaiah.

In short, we continue to fight for our remarkable son. Please continue to pray for us. We need and value your prayers as much today as we did a year ago.

As I reflect on the past year, I can’t help but share a few thoughts…

Have you ever experienced a time when you are confident God is trying to tell you something via a quote or song or verse or something? For whatever reason, one particular quote has resurfaced over and over in my life the last few weeks. I’ve found the recurrence of this particular quote rather odd given the gravity of our situation. I guess I expected God to inspire me with something more biblical or, well, godly. It’s a rather random quote and one you’re probably familiar with. It was a quote by the great theologian Mike Tyson in response to a reporter’s question regarding whether or not Tyson was worried about Evander Holyfield’s fight plan.

“Everybody has a plan until they get punched in the mouth,” he responded.

During my many discussions with people this year, I’ve come to a conclusion: everybody has a theology until they get punched in the mouth. I’ve spoken to more than a few people who, like us, have found their theology rocked by a punch in the mouth. For some, it has been their own tragedy that has rocked their theology. For others, it has been our tragedy…Isaiah’s tragedy.

Speaking as one who continues to take Tyson-level punches to the mouth and who remains in the midst of a fight more brutal than any I could have ever imagined, I feel compelled to expound upon a couple theological thoughts…mainly because I can’t bear the thought of someone losing faith in the God of the Bible because of our pain. Additionally, when you find a peace and a hope powerful enough to persist no matter how many uppercuts life hits you with, you can’t help but do your best to share it with a world full of sufferers.

If you’ve followed along on this here CaringBridge, you’ve probably gathered that I’ve pressed pretty hard into the deeper, difficult questions of life and eternity. You do that sort of thing when life pummels you. You search for answers. You search for meaning. You search for hope. You read a lot. You study a lot. You cry a lot. Then, you spend too much quiet time in an ICU and ramble on and on and on and on and on and on, sharing a mountain of thoughts that no one asked you to share. Ok, maybe you don’t. But, I do.

I could probably leave you with this short, three sentence, Occam’s razor-ish argument for Christianity: Almost inarguably, Jesus is the most influential human being of all time. Maybe he isn’t the most influential human being of all time because he was an eloquent, revolutionary, and moral teacher. Maybe he is the most influential human being of all time because he is who he says he is.

Instead though, I’m going to ramble on a bit, because, well, it continues to be oddly therapeutic for me whether or not anyone actually reads this stuff.

So, let’s get started. In the midst of our suffering, I’ve wrestled deeply with faith and doubt and searched desperately for answers. I’ve searched desperately for hope. I’ve searched desperately for peace. I still land on the following conclusion: when facing the worst things life can possibly throw at you, there is no other hope-giving, peace-giving, endurance-giving pathway through adversity than the teachings of Jesus of Nazareth—the guy who claims to have conquered death via his resurrection. Here’s the short version (believe it or not) why I think that is the case…

Every religion provides a way or a path through the trials of this life. However, with the exception of Christianity, they all seem to me to provide a temporal hope…or a hope that is pretty much fully dependent on me and my abilities (physical, mental, emotional, or all of the above). Or, worse, they provide no hope at all. I’m a huge nerd when it comes to learning. Admittedly, it can be tempting at times for me to compile all the best wisdom and ideas from all the different belief systems and package them together as a wonderful way to get through my suffering, live a blessed life, and move on to the eternal. Alas, not a single one of the major world religions allows for that sort of thinking. (I suppose that perhaps Deism might, but it can’t really claim to be a “major” world religion.)

I’ve read up on Islam. It seems that Sharia Law (and my adherence to it) is the way through this life and its many trials. For those who are suffering, I think Islam gives the most hope to the person who performs the best. The need to live a life where my good deeds outweigh my bad deeds offers me no hope during times of extreme tragedy. Many days, I’m struggling to put one foot in front of the other. Knowing that my eternal life depends on me working to earn my salvation—that my eternal hope rests in my ability to rise above adversity and earn my way—well, that’s a challenge I’m not up for. It’s an added weight I can’t bear. Interestingly, Jesus’s words about how to find peace and attain eternal life run contrary to the Islamic religion. (I say “interestingly”, since Islam holds Jesus up as a miracle-working prophet and describes him as “the word of God.”)

I’ve read up on Buddhism. It seems that enlightenment is the way. I’ll set aside for a moment the fact that Buddhism is fully dependent on my mental ability. A) I’m currently living a kind of pain I can’t seem to “transcend.” B) I feel that my son and my family deserve better than me escaping to a transcendent reality. C) I’ve had many joys in my life I don’t ever want to transcend. Of course, there is the likely possibility that I’m just not smart enough to awaken my mind to a peaceful reality. I repeat, that is a possibility. For those who are suffering, it seems to me that Buddhism gives the most hope not to the person who performs the best but to the person who thinks the best. Where does that leave me and all of my fellow non-Mensa members? Are we just doomed to suffer in our stupidity? I just can’t find hope here. Jesus gives hope to people like me. I’m quite thankful that he didn’t add things like, “Blessed are the intelligent,” or “Blessed are those who are born smarter than others,” to the beatitudes.

I’ve read up on the arguments for atheism/agnosticism. It seems that any truth I discover inside myself is the way. Pursuing my deepest desires is the way. I certainly find no hope here. A quick glance at the covers of the magazines in the checkout line at Walmart fairly well debunks the idea that attaining our deepest desires is the way to peace. Magazine cover after magazine cover is littered with people who attained their deepest desires only to end up depressed, in rehab, divorced, alienated from the ones they love, or suicidal. Fame. Fortune. Power. Ultimately, they all seem to be empty pursuits that leave the pursuer wanting. Also, atheism doesn’t have a solid answer for what I should do when my truth clashes with someone else’s. Absent any absolute moral guidepost, I suppose it becomes an evolutionary “survival of the fittest” situation. Survival of the fittest is depressing news for the disabled, the poor in spirit, the meek, the outcasts, and the chronic sufferers. In the midst of our suffering, I’m very thankful that Jesus omitted “Blessed are the fittest,” from the beatitudes.

In Christianity, Jesus is the way. He makes bold and unapologetic claims about hope, peace, enduring trials, and eternity—claims that are fundamentally different than any other path. In fact, it’s virtually impossible to dismiss the guy as just some eloquent, moral, historical teacher-figure, because his claims are so bold as to directly contradict the claims of every major belief system and unbelief system. He says, “Follow me,” “Take heart! I have overcome,”, and “I am the way,” rather than “Follow your heart,” “Follow your own understanding,” or “You can overcome.” When speaking of suffering and trials, Jesus doesn’t talk about avoiding, transcending, or overcoming trials by work ethic or sheer will. He talks about walking through our trials with us. With us through the fires. With us through the seas. With us through the deserts. With us through the wildernesses. With us through the valleys. Matthew 1:23.

I’m not really eloquent enough to describe why the many stories of suffering in the Bible—and God’s interactions with the suffering—are so incredibly comforting to me, but they are. I’m not really eloquent enough to describe why Jesus’s words and those of his followers are so incredibly comforting to me, but they are. Perhaps it’s because Christianity’s promises are for everyone, not just the hardest working or hardest thinking. That gives hope to people like me…those who need it most…those who find themselves the most broken. In fact, Jesus seems to offer the most hope to those whom life feels the most hopeless. More and more, I love and cling to Romans 8:18:

“I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

I have a deeper appreciation and hope for that verse every day. Yes, I maintain hope for Isaiah’s miraculous healing. But, my hope is rooted in something much, much bigger and much, much grander than any success or triumph or joy this breath of a life has to offer. My hope is rooted in something eternal that will make even the greatest of earthly suffering pale in comparison to the glory that awaits. Paul sums it up quite well, actually: “If only for this life we have hope in Christ, we are of all people most to be pitied.” It’s not that this life can’t be great; it’s just that this temporary life is a terrible place in which to root eternal hope.

At this point in this blog post, I’m sure that you are quite tired of reading; but, I feel the need to leave you with one last story. Sorry.

One day, a few months ago, I found myself at my wits’ end. (It was far from the first time or last time, but you’ll see why it was significant in a moment.) Careese and I were holding Isaiah as he was struggling. Really struggling. He had just vomited everywhere and aspirated some of his vomit. He was breathing erratically and struggling to maintain oxygen. His heart rate was 140. His eyes were bloodshot. He was going into and out of full-body seizures. A couple of his siblings looked on in horror. We sat there holding our boy—beyond broken, beyond frustrated, covered in vomit—wrangling the suction machine, ambu bag, oxygen tubes, and a mess of towels. As Isaiah stabilized and we sat there in the aftermath, I was thinking, “There is no way I could describe this feeling. It’s not fair. It’s not humane. No one could possibly understand what it is like to watch your son—the same son who you used to laugh and run and play catch with and who filled your heart with a billion other perfect memories—suffer and die like this…while those who love him most watch helplessly. It’s too much. It’s too hard. Where is God in this? No good can come from this. No one could possibly understand what Careese and I are going through.” Immediately, there was a still soft voice that popped into my head along with an image of the cross. I’m not one who regularly hears an audible voice from God. But, this time, it was clear; and, for a moment, all the chaos was silenced.

“I do. I understand.”

I say all of that to say this: if you, like us, find yourself utterly pummeled in the midst of a living nightmare…if you feel as though you’re walking through the valley of the shadow of death, I’d encourage you to give the teachings of Jesus of Nazareth a shot. I pray that you’ll find the same hope and encouragement that we’ve found. I pray that you’ll feel the comfort of a God who is with you in the valley of the shadow of death, not in a transcendent/avoidant/detached/let’s-pretend-everything’s-ok way, but in a “with you in the mess” way….in an “it’s ok to cry out, yell, and vent all your hurt, frustration, and anger” way. God can take it. He has taken it. And he will take it. That’s part of the power of the cross. Sure, I find overwhelming peace that the mental and physical burden of life after death, salvation, and attaining a joyful eternity was removed from me and placed on someone else’s shoulders. That’s a massive relief—especially when life keeps punching you in the mouth. Simultaneously though, the cross was the ultimate show of empathy no other religion offers. Emmanuel. God with us.

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