Continued Exhaustion

Kevin’s energy level unfortunately has not increased since my last post. He is still utterly, totally and completely wiped out. Thankfully, his swallowing and coughing reflexes have kicked back in, so we are no longer too concerned about him aspirating something. However, there hasn’t been much of anything in his mouth to aspirate because he hasn’t had the energy to eat or drink. Thankfully, Kevin still has his “tummy tube” in, so he’s been receiving nutrition through that for the past few days. Kevin loves food, so when he’s too tired to eat, that says a lot.

Yesterday, we decided to give Kevin a larger dose of oral steroids to hopefully reverse this downward trend. It’s now been about 24 hours since his first larger dosage, and it is still a bit soon to see the effects of this dosage on his energy level. We are trying to wait for enough time to go by so we can better grasp the situation. The atmosphere here is so tense that it seems like a week since we started him on a larger dosage of steroids, and it was only yesterday afternoon! We’re extremely eager for Kevin to turn the corner and start trending upwards, so every hour that Kevin is lethargic seems many times longer.

The past two days, Kevin has been too tired to attend outpatient therapy. This is the first time he’s missed any outpatient therapy since he started in July. That shows both how fantastic things had been going for a couple months and how poorly he feels right now.

The next couple of days will be very telling in terms of how Kevin responds to the extra steroids. We hope that his energy will bounce back sometime soon so that his muscles don’t atrophy too much during this setback. Plus, it will be wonderful when he feels up to eating, exercising and talking once again.

We are all being consumed by the same worry that’s sitting in the back of our minds and chewing away at our sanity, but we’re all afraid to shine light on that worry and voice it aloud. Many medical clues point to the conclusion that this setback is most likely due to the steroid issue. Yet, we are constantly threatened by the possibility of the tumor growing larger. We dislike discussing this possibility, and we prefer to leave it in the dark corners of our minds. We’ve had to bring this idea out into the open during the last couple of days, which is probably why we are all so tense. However, even with the possibility of tumor growth now openly on the table, Kevin’s symptoms still point to critically low levels of steroids. We’re desperately hoping his symptoms over the next couple days point to this conclusion as well.

Thank you for keeping Kevin in your thoughts all these months. Right now he needs a bit of extra hope, prayers and good vibes sent to him through the atmosphere, so please keep up the support!