One hour

Normally, one single hour would not be very long. Most of them fly by. In the last four days, Abby has not had a single hour without pain. Not one. Every second of all of those hours put together have made the days at home horrific. I have honestly never seen another human in as much pain as my daughter has been in. I woke up literally shaking at the thought of facing another day of trying to hold and comfort her through it. I haven't even run tube feeds for two days because even trickle feeds have been excruciating.

The nurse and practitioner came over today and witnessed Abby's suffering. They still feel it is important to try to get her pain under control before we make decisions about stopping TPN. They want to be certain about what's best for Abby, and not have us make choices because we are terrorized by pain. I think I will eventually appreciate that. Even though we know she can't survive her condition, we would like to see her pain free first.

Today, they doubled the Fentanyl patch, continued the Morphine, Ativan, Grandisol, Zofran, and Neurontin, and for one entire hour, my sweet child did not cry in pain. One hour of relief now feels like a week. I wonder if I've even been breathing, because I suddenly feel oxygen rushing to my tired brain.

She still had pain at bedtime, but settled quicker tonight and has been quiet for a while. We are considering a morphine pump if her pain doesn't stay well controlled.

That was my last sentence last night. She slept pretty good, but has had a rough morning. I am SO thankful for a good nights sleep. I feel better equipped to take care of her today.

As difficult as this week has been, I am still looking for the good I know exists in every situation. There are precious glimpses of Abby everyday. She still gives kisses and answers us. I pray she has peace and feels Gods presence.

*** I can't seem to finish a post, so this is fragmented over 24 hours. She has had a very hard day. We just can't seem to consistently get her pain under control. As grateful as I am for the hours yesterday, today is awful again. We started Pedialyte instead of formula at 5cc/hr. GI is concerned that her bowel could die without any movement, but feeding through severely impaired intestines/ ileus is extremely painful. The small glimpse of a pain free Abby last night makes Jeff and I really want to see her like that. PLEASE pray that she would have relief from this pain. ***