I’ve had this post written for months but haven’t had the courage to post it. It’s about Emmett’s last days with us … a period I think about often. Because honestly, as precarious as his health was, we didn’t know how little time we had left with him. I don’t know if this will help anyone, so I guess I’m posting this more for myself than anyone. But I know I didn’t want to feel like I would ever forget the last few days we had with him, and the path that led us there.
On Jan. 22 – when I wrote my last post – Emmett was improving. By Jan. 24, he was down to 1-2L of oxygen and finishing up his course of antibiotics. We were discharged home around midnight on Jan. 24 which was a Friday. Earlier that day we had been moved from the PICU to the floor because they were in desperate need of rooms in the PICU.
The next day, Emmett was off oxygen for a few hours. Later that night, he started desatting again (which is when his oxygen saturation levels dip below 90) and got a fever. By Monday, we were worried so we spoke to the doctor who discharged us Friday and she recommended we bring him back to the ED.
In the days that came, he got worse but then kind of leveled off…. His infection markers (white blood count, procalcitonin, CRP, etc.) were improving, but his oxygen requirement was not. They ran every test available that didn’t require him to be intubated – if he was intubated, the fear was that we would never be able to get him off the ventilator. Nothing came back positive. We tried doing bipap (which he hated anytime he was slightly awake) both day and night. We did aggressive respiratory therapies – every 3-4 hours basically.
We started to have serious conversations with the doctors about what the next steps were and for the most part, it came down to one decision – whether we wanted him to get a tracheostomy. It was something that had come up last summer when we couldn’t seem to get him extubated, so it’s been a decision I knew was probably in our horizon. And no matter how I thought about it, I just couldn’t bring myself to think… that is the right decision for him. Even though I knew what I wanted for him, it was an agonizing decision. I couldn’t sleep, couldn’t think about anything else.
We did our “research.” We spoke with the doctor who would actually perform the procedure. We spoke with moms whose children had tracheostomies. We spoke with our hospice team to figure out what life with a trach really looked like. We spoke with other medical professionals on the pros and cons. For some people, in some situations, it makes sense. We decided – for Emmett – that it did not. Having a trach – and most likely a ventilator – for life was simply not what we wanted for him…
With that decision made, our goal was to get Emmett well enough that we could bring him home… even if he required a large amount of oxygen here and there, that was fine… we were comfortable with that. But we wanted to bring him home where he was comfortable and where we could hold him and interact with him.
A day – maybe two – later, he got worse despite the most aggressive efforts to strengthen his lungs enough that we could wean down on his oxygen and open his lungs back up. His lungs kept collapsing. We realized that he would likely never be able to come home. In the couple of days that followed, we decided to stop all aggressive treatments and focus on his comfort. Already at this point, he was – for long periods at a time – gasping for air. So we increased his morphine and weaned down the support, and it seemed to “work”… he breathed more comfortably but the morphine, coupled with the long-term oxygenation issues, seemed to put him in what was a medically-induced coma.
We didn’t know how much longer he would have. Doctor after doctor told us it’s hard to predict. It could be hours or days, or – though unlikely – weeks. So we said our goodbyes and invited others to come visit him to say goodbye. We brought him to the hospital’s patio each day so he could get a little sunshine. We read to him, sang to him, held him and told him we were there with him.
On what would be his last day … I left to go pick my mom and Via up. It was a Tuesday… just after noon. We wanted to have a small “picnic” out in the patio with his grandmothers and with Via. But minutes after I left, Steve called me to say that his vitals were dipping even lower. So I rushed back to the hospital. Tears poured down my eyes the second I stepped into the room… because I knew.
Steve and I were with him as he took his final breaths. He was in Steve’s arms when he passed. Even in my grief, I remember feeling a bit of relief for him…. He suffered throughout his life, and it was finally time for him to let go. He was finally able to rest.
I admire your strength during this difficult time and will be always grateful that I was part of Emmett’s life.
I’m Sending you and your family lots of love!