Walking into the Unknown
What lies ahead?
It’s been five months since I’ve updated the blog. I needed to take a break from it, but now we have a major change on the horizon and I wanted to let everyone know what’s up.
Minke had a solid three months of stability. For the first time since this journey began, we experienced 3 months of consistency with no progression of the disease. It almost felt normal, though I no longer know what normal feels like.
May, June, and July we spent time outside in our beautiful backyard sanctuary. We laughed a lot. We had some extremely hard but necessary conversations. We survived four months of construction workers who were renovating our bathroom, and though that stressed me out to no end, Minke kept making me laugh about it. And now that the bathroom is finished, Minke has gained back a little privacy and is now able to have a shower instead of sponge baths. Definitely something worth celebrating!
Minke with his son, Jupiter, July 2023
But on August 1st we received word that Minke’s pulmonary function had gone down again. The decline of his lung capacity has been consistently going down since last December. By August, Minke’s numbers were under 50%, so guess what time it is now? The time to get the dreaded tracheostomy is now upon us.
The surgery is scheduled for Friday, September 29th. But we have loads of appointments to fit in pre-surgery, so suddenly September has become an extremely busy month. Minke must stay in the hospital for 2 weeks after surgery, and he will only be released to come home if we have 24/7 care in place.
Minke can never be left alone with the trach. We currently have two caregivers and two RNs, and more are on their way. There are a lot of hours to fill. Overwhelming, much? There will be people in the house at all times. Day and night. It’s weird. It’s stressful. I need to make my peace with it. They’re helping Minke after all. And in so doing, they are helping me.
The trach scares the shit out of me, but I will be trained on how to clean it and how to use the suction device when Minke needs it. Of course, he will no longer be able to eat through his mouth. For me, this is the worst. Food is love in my book. Food is how I show my love to Minke. And now, that simple pleasure will be taken from him. We’ve been grieving a lot of losses all along the way. This is a HUGE loss!
Further, Minke will no longer be able to speak. He will use his eye-gaze computer to communicate. Long ago when Minke was first diagnosed, he did something called voice-banking where he recorded his voice for the time when he could no longer speak. I clearly remember thinking we would never get to that point, but I was in complete and total denial two years ago. I couldn’t see what our future looked like. It looks like today. We are here. I will hear the AI Minke speaking and I’ll take it. Any voice is better than no voice at all.
So that’s the update. Not exactly good news, but there is no good news when you’re fighting ALS. Have I mentioned how much I detest this disease? It never gives anyone a moment’s peace. Not the patient or their family.
The future is still unknown. I still can’t see what it looks like. All I know is that Minke will be able to breathe a little while longer. He will be here with me and Zelda, a little while longer. I will take every single second I can get.
