Feelings about vent and trach

Having a child with a trach and on a ventilator/vent is SOOOOOOOOO hard. It has been the hardest thing we have had to go through with Ellie.

I am SOOOOOO grateful that that stage of our life is over. I have so much compassion for those parents who will always have a trach and a vent.

A trach is hard also. But a vent is all-consuming.

Getting Ellie off of the vent was fantastic. I remember when I called them to come pick up the machine I was really scared. What if Ellie stopped breathing? But it felt SO good at the same time. I felt 100 pounds lighter at least.

Getting rid of the trach was also scary. Once again, what if she stopped breathing? It was such a big step. But it is so nice having it gone.

You have to remember that with a trach or a vent it requires 24 hour supervision. If the trach gets plugged or comes out that person has no airway.

You can't drop your child off at any old babysitter, it has to be someone who knows how to suction, replace a trach and knows CPR. If you have a vent, then you have to know all about the the vent how to troubleshoot, operate, who to call if it malfunctions, what to do if the power goes out, etc...

The entire time that we had the trach we had to have night nurses come in from 10 PM-7 AM so that J and I could get some sleep. If the nurse didn't show up, we had to take turns sitting by Ellie watching her.

The nurses feel like a complete invasion of your home. You feel like you have to always have it clean. You can't get up in your underwear in the middle of the night. You can't have a late night argument and not be overheard, etc...

However, you HAVE to have them. They were so good and kind. And we could not possibly have survived without them.