I know my posts have a tendency to be quite heavy. Thank you for being a participant in my therapy sessions. Also, thank you for praying.
This post is too much for one week. So, I’m breaking it up over the next few weeks.
On suffering, part 1…
Here at the Wood house, we continue to put one foot in front of the other in the midst of a level of pain and sleeplessness I wouldn’t have imagined possible. Don’t get me wrong. There’s hope and joy and laughter and optimism around here, too. It’s just that the prevailing backdrop of our life right now is pretty brutal. I’ll give you the short version of where we’re at this month. Fair warning: I’ve sort of lost the ability to sugarcoat things.
Our wonderful warrior of a boy continues to fight. UTI tests are finally coming back negative. Thrush test also came back negative. Wonderful news. Unfortunately, Isaiah spent the week of February 7-10 enduring at least a hundred (yes, hundred) seizures each day after suffering his broken arm. Until Sunday night 2/11, his heart rate remained high, and sweat was persistent. We aren’t sure if it was from shock to the body of his broken bone or fever. He is maxed out on medication. We’ve had a lot of conversations with various medical professionals. A lot of conversations. We continue to study, research, pray, and hope; but, there is nothing else we can do. If you’ve followed our journey, this is not new.
Seizures have taken away our son’s ability to move or communicate. His muscles have atrophied and bones have become weak to the point of breaking during routine stretches. A good day is a day when he has fewer than 20 seizures. We rarely leave his side. Nights are very long. Isaiah’s pulse-ox alarm goes off at least once per night and sometimes dozens of times. At least one of those times, if Careese or I one doesn’t get out of bed to run the suction machine, our boy will drown and won’t survive. It doesn’t matter how tired we are. It doesn’t matter how long we’ve been awake or how long we’ve been asleep. If we don’t get back up, he doesn’t live. It’s a lot of weight to carry. Sunday night 2/11 was one of our best nights. We rotated his position as usual at 1am, 3am, 5am, 7am, and 9am. We administered meds at 1am, 5am, and 9am and changed him twice. His alarm only went off a couple times all night. It was the first night I can remember when none of the rotations or changes sent him into a seizure. We both cried tears of relief. Monday was not terrible, but not great. Then, Tuesday the 13th was a nightmare. His heart rate spiked to 190 as seizures became near-constant. The entire day was an all-out battle to keep him stable and keep his airway clear in the midst of seizures and vomit. His heart rate didn’t dip below 160 for 7-8 hours. It wasn’t until after 9pm that we saw his heart rate drop below 100. For reference, he’s on Phenobarbital, Onfi, Cenobomate, Ativan, Valium, Oxycontin, Gabapentin, Baclofen…at the same time…and his heart rate still reached 190. He seized through every turn and change all night, and his pulse-ox alarm went off at least 20 times during yet another sleepless night for our boy. Thankfully, the last few days have been encouragingly better. We hope and pray we’ve turned a corner.
As you would imagine, tears come and go quite a bit around here. Whatever you’re imagining, I can assure you it’s more excruciating. Very, very hard. Very, very painful. Every single minute.
That said, here’s a therapeutic deep dive into faith and doubt and hope and despair.
What we’re going through…the battle our son is fighting…none of it makes sense. I can’t fathom why God would allow us or anyone else to walk through torture like this day after day after agonizing day and night after agonizing night…with no end in sight. “Torture” isn’t a bad way to describe it, actually. “Excruciating” isn’t either. That said, while none of this makes sense, there are a few things I do know. I’ll take the few weeks to ramble on about those things. Thank you for allowing me to use your email inbox this week to give some context and lay the groundwork. If you’re one of those nerds like me who enjoys things to ponder throughout the week, I’ll leave you with this: search the etymology of “excruciating” if you are unfamiliar with it. There’s probably a whole sermon baked into the history of that word. I’ll let you write it rather than taking up more space here. You’re welcome. Until next week…
We’re here, Josh. Reading every word and praying. Wishing there was some way we could ease your burden and heartache.
Praying for your family and for your sweet boy, Josh.