Here we are 9 days post surgery and we have been home for a few days. Addyson has quickly learned all the terminology (flush, vent, iv gravity bag, griplock, etc). She showed me today that she knows how to connect and disconnect herself. One of the surgeons main goals was to give her some independence back w the flushes. I think that was successful. She still has some distension but we have an appointment tomorrow and next Wednesday so we know ppl are watching it closely.
A few people have asked how long she will have cecostomy tube. We were told for years. They are hoping to reverse between 18-21 but no guarantees. We are reminding her that if it helps her that is what matters and since being out of the hospital we have not heard my stomach hurts over and over. We will have an X-ray Wednesday to have visuals on her colon function.
We are battling with our insurance company over med and supply coverage but between us the doctors and the hospital we will get it figured out.
Today we figured out the hanging on the gravity feed bag for both her bedroom and the bathroom so that is done. She is heading back to school Monday so flushes will be getting done early.
Thanks again to everyone who has reached out. Checked in. Visited. Sent items for addyson, brought food or drinks for us, etc. thanks to those who didn’t judge us for being a little emotional at times after the surgeon would relay his new plan. we couldn’t do it without the love and support. It made it so much easier on addyson.
Beaming with hope 