Identified

The bug has been identified and her line has to go. Her surgeons in Shreveport said we have no choice put to get the line out of her. The bug that she has is really only found in immuno suppressed patients who have central catheters. It is not clearing with the use of anti-biotics and continues to give us positive cultures each day. A cardiac surgeon here in Longview has agreed to come in and pull the line for us today.

Our options once the line are out make me very unhappy. If I HATE anything about the whole transplant life and chronic illness it is this very thing... NEEDLES. I HATE THEM. I HATE that they are a permanent part of Ashley Kate's life. She doesn't understand. She doesn't have the ability to grasp why they are doing this to her and she doesn't trust anyone because of them. My eyes are full of tears and I can do nothing to keep her from being stuck every single day for days and days to come.

Option 1: pull the line, schedule surgery in Shreveport after she has been clear of the bug for 3 days. This requires placing a peripheral IV in her and doing peripheral sticks each day until we get a clear culture.

Option 2: Pull the line. Don't schedule a new one to be placed. Attempt to switch her IV replacement fluids to enteral replacements to counter act her ostomy losses so that she does not become dehydrated with the stooling out and the vomiting. Continue to stick her every day for blood cultures and give her antibiotic via a peripheral IV.

Option 3: Pull the line. Don't start a new peripheral IV. Give her antibiotic in the form of an IM shot(in the muscle) each day for the full course of treatment after a negative culture is confirmed.

Each one of these options are not ideal. It is not what we had hoped for Ashley Kate. Each of them cause her great distress and pain to which we as her parents can do nothing about. We will be forced to allow it to happen and to hold her down while it is done. None of which she understands why we are doing it.

In the end if we choose not to have another line placed next week, she may still have to go through it if she fails to tolerate the enteral fluids for replacements.

The only positive I can find in this situation is that without a line she will not have the likelihood of becoming septic again. This is the only positive thing I see about the position we are in. Still like I said, it may not work.

The earliest we could get her home with a peripheral IV or with IM shots is Tuesday and that is only if we get a negative peripheral culture to come back in 36-48hours. They said that is protocol. Have I ever shared with you guys how much I dislike "protocol"? Yeah, I thought I had. Sorry. I know its probably hard to understand where the hate and dislike comes from if you aren't raising a chronically ill child and have never experienced it. Its not a part of me that I like very much, but it is a part of me that has developed out of an inborn desire to protect my child from any and all hurts. I want to protect Ashley and I have no way of doing it.

Dave just called and they are beginning to remove her line. I am still home and it is killing me that I'm not there with her, but its probably a God ordained thing because I'm not very likable this morning knowing what Ash is being put through. Dave is much better at this part of our life than I am. I never want to be unkind to anyone who is doing their job, but when their job hurts Ash its so hard for me to have anything kind to offer. Thats honest. I can't be anything but that.

Your prayers for the decisions we are trying to make today are greatly appreciated. Parenting Ashley Kate has been the hardest thing I've ever done, but it has yielded me the biggest blessings of my life.