Ashley's Story

She will leave fingerprints all over your heart


Its Here!

Our first shipment of Omegaven arrived this morning.

I don't know how to explain how I feel about it. I'm not even sure how I feel about it.

I believe its the right thing to do for Ashley Kate, and yet the not knowing how she will respond to it frightens me.

Change is hard for me. Seems funny that I of all people would say that when our life has done nothing but change continuously over the last 5 years. You would think at some point I would get used to it, accept it, or at least be ok with it.

Along with the Omegaven came our supplies for the week. New company - new products. Change. Did I mention its hard? Anyone know where we can get an IV pole locally? Our old company will take theirs back and our new one won't provide one. I'll need to find one by Friday. Any of our readers who have had children on Omegaven know where you can buy the Omegaven hangers? I've searched online and seen them on people's websites, but can't figure out where to purchase them?

I think I'm nervous because of the admission tomorrow. I mean no disrespect to anyone but I hate having other people touch her. It isn't personal its just a fact that the more people who come in contact with a central line the more likely you are to have infection and complications with one. I really hate having other people touching her with a hepatic line. Dave and I are the only ones who we allow to care for her lines. No nurses, no staff, no techs, no anyone. Like I said its not personal we just have to do what we think is best for Ash. We are used to her line, we know how they function best because we access them everyday. We have yet to find anyone who has ever had a patient, let alone a pediatric patient, in their care with one other than Ash. She is always their first. Even yesterday the nurse from our new company called and asked if I knew what that was. She said that Ash is their very first patient out of thousands that has one. Pretty scary stuff, huh? She didn't think it was safe to run TPN into a hepatic line. Well...when its the only option your left works. Its not ideal, its dangerous, its what we've got. Dave and I were talking about it at lunch yesterday and to be honest the two of us aren't scared of it. We were in the beginning, but its just become like any other central line to us. I mean central lines are all dangerous. None of them are ideal. Its just what you learn to live with and accept when your child is chronically ill. I'm so hoping this will be a quick in and out for us. Just run the Omegaven, take vitals for twelve hours, sit for another twelve, then take them for twelve more, then get out. That is the plan.

The plan is to admit at 9 in the morning. I hope to have the Omegaven y'd in and running by 10. I will stay with Ashley Kate all day tomorrow and spend the night with her. Thursday afternoon Dave's mom will come over to sit with her. I will drive to Whitehouse to watch Allie play basketball. Not sure what time Blake plays on Thursday, but if I can make it to Mt. Pleasant too then I will. Then Dave will drive over after work and spend the night with her. Friday we hope to have her discharged early enough so that we can both attend Blake's basketball tournament. Its going to be a crazy week for us, but like I said life has been changing at record speed for us at a moments notice over the last five years. We should be able to handle it. I hope.


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