Tuesday, December 29, 2015

We don't sleep so Kreed stays alive

Wake up. Alarms going off. Is it oxygen? Blood sugar? Blood sugar. Ok, get the sugar in him. What time is it? 2am. Time for medication. Take his Bipap and oxygen off. Come on Kreed open, open for the pills. Ok. Swallow. Come on buddy swallow. Ok, here is your mask again. 
Alarm going off, what is it. The phone. It's 4:30, check the camera to see if his Bipap is still on. Ok. Back to sleep. Alarm going off. 6:30. Time for the next set of Meds. Bipap off, Meds in, Bipap back on. Ok
Alarm going off 8:00am. Meds again. Bipap on. 

We don't sleep at night. If we did, Kreed could easily go into crisis or even pass away in his sleep. Some nights I have an alarm set for every hour because some nights he never sleeps but I have to keep waking up to see if he's asleep or not. We are lucky because he typically doesn't roam the house once in bed but that's never for sure. His room is directly across from ours, so we see any movement or light or anything that could happen. We also have cameras set up in his room and the rest of the house with sound to hear what he's doing. 

Then there are the extra fun times that a migraine comes on in the middle of the night and he wakes into a full rage. Or first thing in the morning. Or anytime. His medical conditions are so severe and complicated, you never know what will come next. And although he can use a communication device, he isn't able to tell us prior to a medical episode. Only the aftermath. 

So when I'm walking into work and look like I haven't slept in days, it's because I haven't slept in years. His sleep apnea, Dysautonomia and hyperinsulinism diagnosis changed our lives forever. It changed him forever. His medical needs have grown tenfold. And his reliance on us to catch him before he falls has increased by a thousand. While the majority of people with these conditions, including adrenal insufficiency, can tell other people when they start to feel sick or need medication or are in pain- Kreed so far can't tell us any of this. We solely rely on his behavior or any other possible sign we see. Kreed has several severe and life threatening medical conditions and he relies on us 24/7 to make sure he doesn't head toward the life threatening part. Some days it seems incredible that his body has so much wrong and we are the ones keeping it going. Some days I don't know how we do it. We stay hyper-vigilant and track everything about him to make sure we keep him healthy and moving. Some days it all goes wrong and we don't know how we will ever get him back. Some days we just don't have a freakin clue. 

We don't sleep so Kreed stays alive. Sometimes I don't even comprehend the magnitude of that statement. I don't know how our life took this direction. And I can't imagine what Kreed feels daily as his body fails him. I just hope upon hope that we are giving him a happy life despite all the pain...and that we stay awake so he can stay with us. 

So if anyone is wondering what our life is like, just look at how we spend our nights and that about sums it up. 

12:00am, Kreed in bed, alarms set, Meds in place, sensors ready, Bipap ready. Our night begins.