This is the 2nd part to the post Old Scars Made New~The First 3 Days
Day 4, Wednesday afternoon the doctors in the PICU knew a lot of nothing.
They knew he didn’t have an infection, no fevers, no elevated white blood counts, no positive cultures, no virus, no nothing.
No explanation What. So. Ever.
We were still of the mind-set that he was going to get better. I clung to the fact that we were in one of the best hospital’s in the area. Surely they would figure it out and we’d be home in no time. We talked about when he recovered, he’d probably have significant issues, not if he recovered. We hadn’t spoken of the if.
All they knew was that they had a 4 day old newborn in a coma, rapidily losing all brain function with no reason why. He appeared to be perfectly healthy other than the fact he was so obviously not. They finally admitted that they just didn’t know what was wrong and if they didn’t find an answer soon, he would quickly lose the battle for his life.
What? I thought for sure they were taking about someone else’s baby. I simply didn’t understand. What do you mean he’s going to die? He was perfect just a couple days ago – Why can’t you figure out what’s wrong?
It was such a panicky feeling. Pain and panic, I was such a mess. All I could do was sit and watch as each hour seemed to bring more and more devastating news. I could barely move with the lack of pain medicine and lack of sleep.
Then someone hit on the fact that his ammonia level was in the thousands. Yes, you heard correctly, thousands. At this point in our life, ammonia meant something you used to clean things, not something that builds in your bloodstream and kills you.
Thursday morning we received a visit from the Genetic Specialist, who had ordered many, many blood tests the night before. She explained to us what was likely to be going on. We learned the words urea-cycle disorder and irreversible brain damage, citrullinemia and liver disorder and enzymes and protein.
But she offered us a teeny, tiny shred of hope – there were 2 children’s hospital’s in downtown Chicago that had the means to use dialysis to remove the ammonia from his blood. She seemed relatively confident that this would be what we needed to make him better and bring him home. I was euphoric. We had a plan, he was going to get better and we’d be home in no time.
I really was so very naive.
It was like a 3 Stooges short, they were making arrangements to have him air-lifted down-town. My in-laws were sent to the RMH, so they could freshen up. We were gathering our things and making calls, when the doctor came back, very grim, very serious.
“They won’t take him.” She said. All activity stopped. What? What do you mean they won’t take him?
“After reviewing his records and the fact that he’s been in this hyperammonemic coma for several days, they don’t think it will make a difference. Even if they could save him, it would be a long shot and his quality of life would be severely compromised.”
*……crashing….darkness…I think I forgot how to breathe…*
How could they say, no? Weren’t they supposed to try and save everyone? Didn’t they know this was a teeny, tiny baby? A Child that hadn’t had a chance to live yet? I remember stating the obvious “But if they don’t take him, he’ll die.”
And with that they asked when would we like to take him off the ventilator. They also wanted to do a post-mortem liver biopsy, then they would be able to confirm their suspicions of citrullinemia.
It had happened all so fast. My post-delivery brain was still trying to make peace with the fact that we were even in the hospital, let alone the fact we would soon be leaving without our son.
So, late that afternoon, they placed him in my arms and quietly turned off the ventilator. Unlike David, they said they could not remove the breathing tube from his throat, so I never had that 2nd chance to see my sweet newborn free of all the wires and tubes.
They took him from me, it seems like the doctors and nurses were in the room, waiting. There was no “Take your time.“, no “Do you want to bathe him?”, just a feeling of “Let’s get this done, we have other patients, living patients to attend to.”
Such a dismissal. They let us know that once they had the results back from Baylor University, they would let us know what the diagnosis was. And that was it. We were free to go.
Therein lies the difference between the these 2 devastating events. Nathaniel is very abstract for me. It was through a foggy haze that I moved through those couple days. Yes, losing him was absolutely devastating for me. I ceased to exist. I had quit my job as a computer programmer because I didn’t want to juggle a newborn in daycare. So when I arrived home, I had no job, I couldn’t paint, and I had no baby to take care of.
It was like the life was just ripped from me. I suppose, in many ways, it was.