The choice.

This post is going to be painful to read. It is so painful to write that I almost cannot bear it. Yet I must write it. I am going to say things out loud that I am having trouble processing. These things sound horrible and will make you cringe, but my journey through this has been based in honesty from the start, and I want to continue to be honest. I know other parents have been in this situation and have the same questions and doubts.

The weight today is incredibly heavy. It is pulling me under. Today, I feel like we killed James. I feel like we euthanized him, if I am being totally honest.

This may shock you to read, but I will explain more fully.

James did well with his trach and G-tube surgery. He was recovering uneventfully. He breathed easier than I’d ever seen him breathe. Then unexpectedly, on Saturday night, he had a severe hypertensive crisis. It took him a long time to respond to medications, but he eventually seemed to stabilize.

Then on Monday morning, he crashed terribly. His oxygen saturation plummeted to zero. His heart rate followed. His ECG was a flatline. He was limp and purple in his father’s arms. I wanted to let him go. I had told him the night before – as he was struggling – that if he needed to go, mommy and daddy would be ok, and he could go.

Jim wasn’t ready when he crashed. And so we manually bagged him. We didn’t do chest compressions or administer epinephrine. And he came back to us.

He was on maximum support for his pulmonary hypertension. And he still had that episode. He was still struggling anytime he woke up, dropping his saturation levels. I asked his grandfather (a retired pediatrician) what he thought, and he said “I think he’s getting tired.” My heart broke at those words, because my father-in-law is a man of few words and an ardent supporter of James. He loves his grandchildren more than the world, and for him to say that to me… it was a knife in my heart.

After much deliberation and discussion with his doctor, nurses, and respiratory therapists, we decided to take him off of support. We assumed that since he was on maximum support, and he still basically died, he was not responding to the medications as he needed to be. His pulmonary  hypertension seemed to be progressively worsening.

His doctor offered a quick echocardiogram to evaluate his pulmonary pressures, but the caveat was that the pressures are dynamic, and if they’d been normal when we checked, it was no guarantee that they’d be normal in an hour. There was no guarantee that he wouldn’t crash again. We opted not to do the echo, and now I wonder why? It was non-invasive. Maybe it would have given us more information.

So, we got medications ready for him – fentanyl and midazolam – to keep him sedated and calm when we turned off his ventilator. Before that happened, despite being heavily drugged, he woke up. He looked at us. He listened to our voices. His color was good, and his saturation and heart rate were fairly stable – although at 100% oxygen and 40ppm of nitric oxide, his saturation was still only low 90s.

I want to believe so, so badly that he was saying goodbye when he woke up and looked at us. But I fear that maybe he was waking up to tell us not to give up on him – that he wasn’t ready to go.

I have so many questions. His first hypertensive crisis – his heart rate went up to 250. His color became gray. His limbs were cool. The second severe crisis, when he died essentially, was very different. His heart rate never climbed. His saturation levels dropped first, and then his heart rate followed. Prior to the episode, he’d received a bolus of midazolam – a sedative.

There are so many questions that I can never answer. Why didn’t we wait? It wasn’t any more invasive for him to just wait. He already had his central line in place. He was sedated and on medications. We could have waited – given him more time.

What if it was the midazolam? What if he had a plug in one of his bronchi? What if the episode wasn’t related to the pulmonary hypertension? What if what if what if what if??

We were so exhausted. I’d been at the hospital for 2 days straight. I wasn’t thinking clearly. I was an emotional wreck. What would our decisions have been if we had been rested and able to think clearly?

At the end, we gave him a large dose of fentanyl IV and pulled his ventilator support. Fentanyl is a potent respiratory depressant. He died soon after. I question what he died from – was it his pulmonary hypertension, his dependence on oxygen and positive pressure, or did we overdose him on fentanyl?

It is agony to wonder if you gave up on your child too soon. It is agony to think for even a moment that you killed your child. It is so hard to remember any of it clearly. The exhaustion had taken its toll, and I cannot really remember my thought process. I do remember talking to his doctor, snippets of conversations with his nurses and respiratory therapist. I remember one of our favorite nurses gripping my hands after he was gone and telling me to never have any regrets, that we did everything for him.

I wish that I could do what she said. Instead, when I think of those last, terrified, gut-wrenching hours, the hand around my heart clenches until I cannot breathe. We always knew that James wouldn’t be with us for our whole lives. We believed that his life’s value wasn’t measured in its quantity but in its quality.  We only wanted the best for him, the happiest, fullest life that he could have.

And I see these trisomy babies on our boards beating the odds every day. They are so much stronger than the medical establishment allows. James was doing so well – gaining weight, growing, interactive, and his heart was stable. I had let myself start to believe that we might have years instead of just months.

The only thing that I don’t question is my motives. I would have cared for him until the day I died, no matter how hard it was. He wasn’t a burden. It was never a burden to be his mother – to be his guardian and advocate. I loved him so very, very much. I love him still.  I have hoped that time will bring clarity, but as time moves on, and the events of the day become hazier, my doubts worsen.

I know that guilt is a normal part of grief, and I hope that one day, I will be free of these feelings. Till then, I ride the waves as they come and hope for peace between them.

(And yes, I am seeking professional help with my grieving, as well as counseling for the girls.)