Epidural Free

They have pulled the epidural after we decided that it wasn't working. They have increased her Dilaudid (a narcotic) and put in an order for Toridol (an IV motrin). The Dilaudid makes her feel a little better, but she is still in pain. I am pacing the room waiting for the Toridol to come up to the floor.

It has been a long day with lots of crying and whimpering "I hurt", which has been unbearable.

We got to lose the epidural and pulse-ox today and hopefully will lose the catheter in the morning. Then we just need to get the pain med cocktail that will work for us.

I really wish there was a better list of what to ask for when your child is in pain and how much, how often etc. It is hard that the nurses often are gun-shy to page the doctors for a change in dose or frequency. We had to push to get the epidural pulled tonight (since it wasn't working) and I only knew to push thanks to another OI mom who happens to be an ER doctor. They then thought we couldn't have toridol for hours due to the medication that might be in her system from the epidural, but again the ER doctor gave me confidence to push for it.

She just asked me "do you have brittle bones?" and when I answered "no", she said "that's good... you're lucky". That is just heartbreaking. She also said "this is a nice place" about the hospital - which is a remarkable thing given what she is going through. What an amazing little kiddo she is.