Get It or Forget It Day

Today was a big day for me. My Mom was calling it sink or swim day, but I thought that was a little harsh way to put it, so we changed it to get it or forget it. Either I was going to get a trach or forget about the ventilator and breathe on my own. After being on the ventilator for a month, my lungs were just not ready to forget the comfort of mechanical ventilation. My doctors and nurses tried to give every chance to breathe on my own, but it was very hard for me. We are basically faced with 2 options, either continue to sit in the hospital until I can successfully wean off the ventilator or have a trach placed so that I can go home and wean off the ventilator at my own pace. Since waiting could possibly take months, we chose the trach.

So what does this mean? The ENT doctor is going to put a small hole in my throat and insert a tube into the hole (kinda like an earring, but bigger). The trach tube can be hooked up to a ventilator or an oxygen tank. This set up is more conducive to a home setting, as opposed to having the ventilator tube in my mouth. Being at home will allow me to thrive and start to enjoying being a baby without the constant interuptions in the hospital. The vented trach allows more mobility and I will be able to do most things that babies do. The trach is not permanent, but will be kept until my lungs can grow enough healthy tissue to allow me to breathe on my own. It's really hard to say how long this will be at this point. It could be a few months or a few years. Good news is that I won't have any more of tape on my face, so you can start to see how cute I really am. I am also going to get a G-tube, which is a tube placed in my belly to allow for an alternate way to eat in case I am not able to bottle feed. Some chronically vented or trached babies have trouble eating, so this will ensure that I am always able to get the nutrition I need to grow my lungs.

It's been a long road for me, but this will be what I need to finally get home with Mom, Dad and Zoie. My surgery will be scheduled for Thursday or Friday or very early next week. If everything goes well, I could be home in a couple of weeks - just in time to celebrate Thanksgiving. I will be sure to let you all know how things go and ask for your continued prayers as we prepare for surgery.