Wednesday, June 8, 2016

A Living Hell with Heaven Breakthroughs

the shame and guilt are heavy in this post.  i thought about skipping parts but i must honor our truth. and perhaps someone else sees themselves in the decisions we made. and that will make it worth it to share. but it's a source of great pain for me.

after noah got settled into his room at seattle children's and we had some time with him, we went home. 

we went fucking home. 

how did we even do that? we actually left him there. this really goes to show how much we were in shock and completely bewildered. because knowing what i know now, i never would have left. 

john and i actually just talked about this a bit at noah's place on his birthday. it comes up now and then. we don't understand how we could have driven home. but like with everything in life, we do what know is best with the information we have at the time. and looking back we remember doctors and nurses encouraging us to get some rest at home, as it could be a long haul. they assured us they would call us with any change and we were only a 30 minute drive away. 

we actually never spent the night at the hospital with him. my mom stayed over more times than us. the decisions whether to stay or go that entire time he was in the hospital were excruciating. when we were there we felt in the way in his tiny room with huge machines. and when we were home all we wanted was to be with noah. we never could win. but either way, nothing would have changed anything. 

but back to that first night after we went home. we had been asleep for a couple hours when our phones rang. we shot up like a heart attack. the news wasn't good. we had better get back to the hospital quick.

we raced in the car. john said a prayer.
moments later, while we were driving, we got another call. his oxygen sats were actually stabilizing for no known reason. (john and i exchanged glances. WTF?)

but by the time we arrived to the hospital, on the early, early morning of june 8th, his oxygen levels were dramatically dropping again. there was crazy hustle and bustle all around his room. the head doctor was on the phone getting second opinions on what to do. all we could do was watch the chaos through the glass of noah's door. helpless. 

i was frantically texting anyone i could find in my phone to pray. we were desperate. 

the decision was made that he needed to go on a lung bypass called ECMO. life support. the machine would essentially do the work for his lungs, so they could take a break. (his lungs were not working. and he wouldn't survive without it.)

he immediately went into surgery to have two ginormous catheters inserted into the side of his neck where his main arteries were, among other intense things i couldn't even fathom. 

and we waited in the hospital starbucks. all the worse case scenarios flooding our minds.   

there was no denying it. this was fucking serious. (sorry i'm being an 'ol cuss. no other words seem strong enough.)

at last we heard he was out of surgery and it had gone well. 

now the hellish waiting game. all we could do was wait and see if he could stay strong and eventually ween off the bypass machine.

the next ten days were ... i don't know how to describe it using words. but what i can tell you is that my chest feels like an elephant is sitting on it as i recall the memories. and i'm terribly distracted with my PTSD looking at the machine above my head in the picture above. see those little purple numbers in the far right corner? those were his oxygen levels, and they were a matter of life and death. we watched them obsessively.

for the first few days he was on the ECMO he seemed to sort of settle down. stabilize. rest. we began to find a rhythm.

small victories. devastating blows backwards. divine interventions and lifeline-type support from our loved ones. we were living everyday in a hell that caught glimpses of heaven.

and rainbows. so many rainbows.

see you tomorrow.


  1. So heartbreaking. The post title is perfect.

  2. I've been following you for a while and my heart breaks all over again for you reading this entry.