Old Scars Made New ~ The End of the Beginning

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.

*sigh*

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.

*sigh*

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.


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Categories: Life | Tags: , , , , , , | 8 Comments

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8 thoughts on “Old Scars Made New ~ The End of the Beginning

  1. What a terrible experience for you to have gone through. I’m so sorry they didn’t feel that they could try, and I’m sorry you were dismissed in such a manner.
    Thank you for sharing the stories of both of your angels.

    Kirsten

  2. Oh Amy. Sending you love, thinking of you as a great spirit in this world. I hope you paint again. Love love love to you and your family dear.

  3. patty

    Thank you for having the courage to share this with us. I cannot imagine the pain in going home empty handed! I had to leave my son in the nicu for a couple weeks and I well remember the pain of going home without him. I cannot fathom the emptiness you felt. And now 10 years later to have to leave David behind when you had a means of dealing with the ammonia is beyond my human mind. I cannot imagine myself surviving without the knowledge that I would see them both again, and in the meantime know that they are in no pain. I continue to pray that you will faith in God and know that you will one day be reunited with your boys. I cannot help but think that the Lord has big plans for you, to have allowed you to go through this not only once, but twice.

  4. Amy, I have not looked at your blog in a few days, but I want you to know that I am still praying for you and your family. Grief is a difficult thing for anyone, but with so much love and dedication in your heart, I know it must be even harder. I, too, pray that God will make Himself very, very real to you in the days ahead. Lovingly, Gloria

  5. Nikki Mitchell

    😦

    It’s such an inadequate symbol but does sum up how I feel for you after reading these two posts. Sad. Sad for you and for your angel boys to have gone through such a terrible experience. You do such an amazing job at describing the indescribable. Thank you.

  6. sharon

    What a surreal experience. Devastatingly sad but surreal. I find it hard to believe how lacking in compassion and care the hospitals were towards you, especially with the rush to switch off the ventilator. I don’t know how you could be expected to react in such an awful situation. Not at all surprising that you felt as though the life had been ripped out of you. You are one very strong woman to have survived that and now, here you are again, surviving! I take my hat off to you Amy for having the strength to carry on and build a new life after losing Nathaniel. I wish you strength and peace as you seek to rebuild your life again.

    xoxox

  7. I am in a cold shock at the way the doctors treated you, treated your son at the end of his life. There was no respect, no dignity.

    If you’ll forgive me for saying this (because I know from reading that you do believe, even if there are struggles), but God welcomed Nathaniel in an entirely different manner than he was dismissed.

  8. Your stories are making me cry. A lot. I can’t even imagine. You are sooo strong and I’m sooo incredibly sorry for the loss you have had to experience. 😦

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