Update from Danny:

Hi everyone, this is Daniel writing an update for the blog Heidi is maintaing. It's about time for more than little depressing news flashes on Facebook which I realize must cause more confusion than anything else for many of you.

 

Last night Sarah stayed with Willy all night and I'll do the same tonight because he is waking up very agitated and in almost complete state of delirium. He wakes up and screams and after a while he slips into a state of semi-sleep or a stupor just to repeat the process all over again. That makes it difficult because as soon as Sarah would lie down to sleep and begin to slumber, he'd awaken again screaming.

 

So far the nurses, especially last night's nurse (but we won't go into too much detail), just give him a bolus (large single dose of medication) of a sedative, pain killer, or both. Well, about 20 minutes ago the psychiatry team stopped in and asked us a lot of questions about Will and his behavior. They also observed him, of course. Their assessment is that William is way too over medicated at this point and they are recommending immediately that William be weaned off the sedative completely, although slowly so he won't go into a state of shock. I brought up my personal experiences with night terrors--as I still remember them quite clearly from my childhood--and she said that is a great way to explain and understand the kind of states of consciousness he is experiencing. Sort of an "in-between" state that is quite hellish because he can't really make sense of what's going on. Clinically it is a state of psychosis, or madness, to use the archaic term, and one that should go away as he weans of the meds. For now we have requested his bed be turned toward the window and we're trying to give him more sunlight and let him look outside, something that generally helps him calm down (and then he close his eyes and sleeps). The bottom line in terms of his mental state is that he can't hold on to a state of consciousness (e.g. awake, asleep, etc.) for very long and that is the cause for concern.

 

Regarding his pain, it's hard to tell what's going on. He's been cut open and that incision wound is infected, so obviously that causes pain. He has a portion of his bowels protruding from his stomach, and that can't feel normal, but shouldn't cause too much pain. He still has all kinds of IVs in, which hurt when moved or tugged (they are good at avoiding that, but the ones in his neck do seem to cause him pain occasionally just due to the placement). So in terms of pain management, he is still on a constant dilaudid (dihydromorphinone, a hydrochloride).

 

Finally, regarding the infection, kidney function, etc. we just don't know. His abdomen is still very swollen, it seems larger and firmer today, unfortunately. They've been doing x-rays but there's nothing definitive showing up. There is something going on down there, but we just don't know what. Oh, and the worst news of the day: there is blood and clotted blood coming out of his stoma (the portion of the upper intestines that come out into the ostomy bag). They don't know why, nor is it a definite sign of something truly bad, but it's not good. They're culturing (sending a sample to lab to test it) now and the gastrointestinal surgical team will be analyzing the results and sharing them with us later.

 

Other than that, Sarah and I are really struggling with watching him suffer so and are sick of waiting. At the same time, we remain in good spirits overall and feel the Lord strengthening us through His Holy Spirit. For those without faith it may be hard to understand this, but the fact is that we see many blessings in our lives even through this dark lens. We also feel like we are learning a great deal about the nature of this world, the experience of mortality, the reasons we suffer and, perhaps above all, we feel our sense of compassion increasing. I especially feel as if I have been blind to all of the people around us who have been or are going through great trials. We know people who have lost spouses, to death or desertion, lost children, suffered paralysis and on and on. Of course I was aware of these people and their situations, but now I realize that the greatest challenges we all face generally happen behind closed doors, or eyelids, in the quiet of the night and beyond the prying eyes of the world.

 

We love and appreciate everything so many have done, are doing and will do to help us through this trial. Regardless of the outcome, God is great and merciful. This life is nothing in the scope of eternity. We are more than our bodies and there is much more than this world.

 

Thank you all. We love you, and William loves you.