As many of you are aware, we have quite a lot of things going on in our life in 2020 (well, we’ve always had a lot going on…but especially in 2020). Yes, I’ve recently released my book; but despite this blog and my social media accounts functioning as annoying and repeated pop-up ads for my book (sorry, it’s the only way I know how to market it), my little book is actually one of the least important things in our world this year. Sure, I’d love for it to do well; but our son’s ongoing health issues continue to be our priority (the book was written prior to his health issues).
We try to post regular updates regarding Isaiah’s health over on CaringBridge (https://www.caringbridge.org/visit/isaiahwood). That will continue to be the best place to follow along for updates on the health front. However, I’m going to break pattern today and provide a synopsis here in an effort to alleviate future guilt I feel when people say things like, “I had no idea! I wish I’d known so I could be praying!” …which happens more and more frequently as word has continued to spread about our remarkable son. If you’ve followed along on CaringBridge, there is nothing new here. You already know all of the information that follows.
For those of you who are not aware, I will attempt to sum up 100+ CaringBridge 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, 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.
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.
We’ve now been back at home for a little over 6 months. We are miraculously better, but 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. We don’t sleep much. Then again, we have 8 kids in our home. Sleep hasn’t been a luxury we’ve had for a long time.
I will say that, as time has passed and Isaiah has grown more stable, his momma and daddy have also grown more stable. But, we still have rocky weeks (last week being one of those). Overall, we’re so very thankful to be where we’re at. God is good, and we press on. Thank you for praying. For those who’ve asked about a GoFundMe or similar way to help us out financially, we don’t have one. God has provided. All of our financial needs have thus far been met–all $2 million plus. Yes, you read that correctly. All $2 million plus. So, if you feel so inclined, allow God to use you to be radically generous with someone else. Again, we’re miraculously good.
So, that’s where we’re at. I do plan on keeping Isaiah’s updates over on CaringBridge and leaving this here blog for author-related and book-related stuff. So, feel free to follow along over there. Thanks for reading. Thanks for praying. Thanks for following.