Bumped

We are being bumped. Not to co-op, but to the general pediatric floor. I can't describe my frustration. I tried. Hard.

Ash will be a great risk of exposure to germs and virus' on the floor. Especially influenza. I am so frustrated!

I asked why we would not be allowed to return to cooperative care where I am allowed to do all of her care. The answer, "Because we tried and it failed." Thats not good enough for me. Nothing could have predicted the success or failure. It has NOTHING to do with the care that was given or the environment. She was much safer there than on the floor. She just wasn't ready to have her chest tube removed and that wasn't our decision it was theirs.

My request on the floor is this, NO ONE enters her room. NO cleaning crews, no techs, no nurses. It has nothing to do with the nursing care which is absolutely some of the best we have ever had. It has everything to do with EXPOSURE. To what every other patient in every other room has. In coop I get to be her mom. I get to take care of her. I get to be the one who touches her. I get to decide who touches her and who doesn't. I desperately want to take Ash home and we are so close. I do not want her exposed and run the risk of extending her stay or causing her to become very, very sick again. Our surgeon just told me, "I hope your not able to say, "I told you so" to me in a day or two".


This is one of the most difficult parts of our life with Ashley. The part where the decisions for her are taken out of our hands. We are not allowed to say, "No, I disagree with you." "We would rather do it this way." Once we are in patient we are no longer the care givers, the decision makers, the parents. We are merely allowed to sit back and watch everyone else do what they would like to our baby. I won't pretend that this is not hard for me, because IT IS.

Again let me say that I have the highest respect for our doctors and especially our nurses(99.9% of them), but I still disagree with THIS decision.

Our surgeon walked out of our room and said, "Then we will agree to disagree." Not really, because I didn't agree to anything. I'm not being given a choice.

Oh, I know there are those who will take great offense to my frustration in this instance, but I implore you to try, just imagine if you were in my shoes. Let it be your baby for one moment and I'm pretty sure you would share my concerns.

Please pray for Ash's protection. Please pray for her to have the ability to breath without the use of oxygen. Please pray for the fluid to stay out of her lungs and for the chest tube to be removed this very week so that we might find our way home.