It is 430 am. I am sitting on my "bed" in the PCU watching Will sleep while keeping an eye on his monitor. I have had only 3 hours of sleep a night since our arrival here on Thursday, so why I cannot return to sleep is a bit of an enigma.
I sit here, watching his blood pressure and heart rate drop yet again and my heart is heavy. While we are in the hospital, Will is fully loaded up on fluids and carnitine. He basically is returned to his best possible physical condition. Most people leave the hospital and need a period of recovery time. But Will is at his best. So, if at his very best, his vitals drop so significantly, then what are they doing at home while he sleeps when his vitals are typically lower?
We have had endocrinology and cardiology consults during this admission. More testing will be completed today. But I doubt they will find much of anything. Between the mito and the brain stem issues, his autonomic nervous system is not going to function properly. This is all likely just more of the same...a progressive disease complicated by a brain stem that is apparently not recovering from being compressed.
The doctor is tossing around options, like sending Will home with continual IV's. Lots of people live their lives always attached to their line. But Will has already stated that if living a more active life involved an IV every day, then he would sit on the sofa. As his mom, that was a difficult statement to hear. I can only imagine what he will say if/when he is told that continual IV therapy is the next step for every day life...not just an active life.
There are not words to express the emotions that flit through me during the middle of the night musings. I listen to the beeps and alarms and realize that they are alarming for Will. His bp is low. His heart rate is low. I fear what may happen if they drop too much lower. I know that Will is in God's hands and that He has appointed a time for Will to be with us. But I want to scream and cry and I want to pretend that he is just sick today and after this admission things will be better. I want the doctors to find a reason for the precipitous drops in vital signs. But I really do know that this is just more of the same. I just pray that I have the strength to hear and Will has the strength to handle whatever news they give us...and that our family can somehow find the strength and desire to love and support one another in the midst of it all.