15/12/2025
Two years ago last Friday, Emmett was finally successfully extubated. He spent 84 days intubated, 11 weeks straight. He had tried to extubate three times before, but each time he had to be emergently re-intubated. The daily X-rays, the constant retaping, and the sedation were relentless. Keeping him comfortable while intubated was hard, but it was even harder watching him wean off the heavy sedation medications that were necessary to keep him safe.
For 11 weeks, I wasn’t able to simply pick up my baby. For almost three months, I needed a nurse and a respiratory therapist just to help me hold my sweet boy.
Emmett fought so, so hard. After being extubated, he slowly worked his way down to room air. On my birthday, February 15th, he came off oxygen completely. In just two months, he worked through so much, and I am endlessly proud of him.
We were given a month and a half with Emmett in the step-down unit with no oxygen and no sedation medications, just him being his true, silly self. He made every single day brighter and more beautiful simply by being here.
After the Glenn, Emmett was never off a ventilator again. For the last five months of his life, he was always supported by a ventilator in some way. He is truly the strongest, bravest little boy I have ever known and I am so incredibly lucky that he is my son.
But I also believe, deeply, that he should never have had to endure everything he did. Especially after working so hard to get there.
Once it became clear that the Glenn wasn’t working for Emmett, more should have been done. Instead of finding an alternative path for him, temporary fixes were used over and over again, fixes that everyone knew were not long-term solutions. We had countless conversations about how unique Emmett was. There was no textbook for him, no other baby with the same exact genetic, vascular, and heart conditions. And yet, when we said something wasn’t right, we weren’t truly heard.
For four months, the same temporary fix was repeated, knowing it would not save him. And now my baby and my family live with the irreversible consequences of those decisions.
I hope they learned from Emmett. I hope they learned to listen to families before it’s too late.
I’ve since seen other children who didn’t tolerate the Glenn, and when it became clear, the Glenn was taken down and the BTT shunt was replaced with a larger one. I truly believe that would have saved Emmett. He was thriving with a BTT shunt. He only went in for the Glenn because he was expected to outgrow it. Why wasn’t that option tried for my baby? Why weren’t alternatives explored?
I remember begging every single day.
And still, I wonder what would have happened if I had known more, if I had asked the right question, if they would have listened.
They dismissed me as a parent without medical training, but you don’t need medical training to know when your baby isn’t okay.
471 days.
471 days without my baby.
And I still find myself searching for answers, searching for alternatives that saved other children. I can’t believe this is our reality, that we have survived this long without him.
It is so unfair. It feels unreal.
No parent should ever have to outlive their child.
The pain is heavier than words, and this time of year makes it even harder.
You should be here with us, baby.💔🐌
