Other options for your child
There are many reasons why parents might look at options other than trach and vent before making a decision.
You can listen to two different family experiences below.
Tomas: For Miguel, the doctors basically gave us three options. He could get a tracheostomy, or we could keep him in the hospital until he got better… and though we didn’t want to hear about it, we also could have taken him off the vent. That meant he would die. Thinking about those things, it got really dark. I didn’t want to consider our life without Miguel in it.
Marta: So really for us, we had two options: But, if we kept him in the hospital, he might even need even an additional year there before he could come home. And with the trach they told us we could bring him home and learn to take care of him. We also had to think about what all this was doing to our other son Sammy. We were at the hospital all the time with Miguel, but Sammy needed us too. We needed to all be home together.
Tomas: It was by the grace of God that Miguel kept fighting like he did. We believe he’s here for a reason. That God’s will is whatever it’s supposed to be. We left it up to Him, and He wanted Miguel to stay with us.
Marta: Tomas’ parents are in Mexico, so they have not been able to meet Miguel yet. The day before his trach surgery, we had Miguel baptized to give Tomas’ parents peace of mind. It helped us to find some peace, too.
John: I feel like I really explored the different options for Ruby. Thinking about what a trach and vent would mean for her, you know, it just didn’t feel right. Sure, the trach would have let her move around a little more than the breathing tube in her mouth, but she would still always be attached to all those machines. And she looked miserable more and more of the time. That was my main concern – no matter what, Ruby should not suffer.
Once we made the decision not to do the trach and vent, the ICU doctors talked about what it might look like to let Ruby go. The palliative care team helped us think through different options for making Ruby’s last days as good as possible. We talked about trying to get her home, even for a few hours, with hospice to help us out. In the end we decided not to do that. But we took pictures and made hand molds and all of her nurses came around to hold her. Because the nurses knew her so well, you know? They loved her too.
Ruby and I both knew when it was time…that day, she just looked tired. The nurses got her all dressed up and then helped to get her into my arms. Ruby’s mom was there too. The doctors were there to give Ruby medicine in case she looked uncomfortable– that was good because I was scared she was going to struggle. But it was actually really peaceful. Her last moments were in my arms, and I can’t imagine a better way if she had to leave this world. I knew when we decided against a trach and home vent that Ruby would die, and that decision will always weigh heavy on my heart, but I know I made the right decision for my baby girl.