I cant do this

Those were my words to Dave as I sobbed and sobbed and sobbed before getting on that jet. I knew I couldn't do this. Not again. I knew what we were walking into and I knew it would become a never ending battle that I am just too tired to keep fighting. "But you will do this. You will do this for her." That was my brave husbands answer to me. The man that held her tiny body for a last few moments before loading her onto the gurney. When I asked him how he was doing he answered, "I'm numb", and I could tell that he was.

What can't I do? I can't play this game. I can't. I can't come to this hospital and be pushed outside the circle. NO. NOT AGAIN. This has been our biggest frustration and complaint over the years with our transplant center. NEWSFLASH: I DO NOT CEASE TO BE HER MOM JUST BECAUSE SHE HAS BECOME YOUR PATIENT!!! This is my daughter. I take care of her every single day of her life. Include me in the decisions being made. Discuss with me what you feel needs to be done in order to preserve her graft and save her life. DO NOT ASSUME that you can do whatever the heck you want to her and then come in and inform me of that. I DON'T care about protocol and "what you always do". She's not a "this is what we always do" she's a little girl and she is an individual. Her needs are individualized not written on some protocol list you are checking off. Treat her as such.

I'm so sorry to vent, but I have learned in the past that I need to get this out or its going to come out at the wrong time on the wrong people. I have to work this through before rounds this morning. Otherwise its going to get ugly and I don't believe in being unkind or dis respectful. To anyone. Even those I don't agree with. So I'm working through my anger and frustration at the 6am hour.

Here is the deal. We agreed to bring Ashley Kate back to do two things and these are the only two reasons I will EVER bring my daughter back to transplant.

1. To preserve the graft. That means her transplanted organs.

2. To protect her life.

Outside of those two things I don't want them doing anything. I'm not here so they can pick her apart and search and dig and look for more and more and more diagnoses. Trust me, we know they are there. Ashley Kate is a chronically ill child. We get it. We choose NOT to dwell on it. We have CHOSEN to live. To allow her to experience life and all the beauty it holds for her while she is on this earth. I'm not interested in any "more" labels you can find to slap on her and on her charts. Sorry, not this mom.

So no, you are not getting me to draw MASSIVE amounts of blood from her tiny, frail body so you can run test after test after test. NO. I'm NOT doing this. I will draw daily labs and that in itself is going to cause her little body to run low on hemoglobin, but drawing 10ccs of labs this morning to add to the 7 ccs we took yesterday and oh not to mention the 9ccs we drew upon admission and the daily labs that had been run in two other hospitals over the past upteen days (yes I know I just made up a word that doesn't exist) is not happening. Especially when you are just "looking" for more issues that you have no indication are even there. I'm not thrilled with the knowledge of knowing we are looking at a blood transfusion very, very soon. Yes, its been done hundreds of times with Ash, but why cause it just because and run all those risks? It will come soon enough. I'm not giving you 10ccs of her blood this morning. Think of me however you will. Bottom line is this, if you think there are indicators pointing to all of the possibilities you are wanting to test for then how about walking down the hall, knocking on our door and sitting down to discuss with me those indications. It would go a LONG way with this mom. Don't just send our sweet nurse down here to tell me this is what we are going to do. Cause we are not.

One of the leading causes of death in a hospital is secondary infections. Yep, we've already got one along with a cough that developed yesterday. Its my job to get her out of here before she becomes one of those statistics. Trust me when I tell you that as soon as her grafts and her life are in a safe place WE ARE LEAVING without any new labels they are passing out.

Its going to take a lot of prayer to get us through this admission. These are the reasons we haven't brought Ashley Kate back in over a year and a half. Praise God we had that time at home. I am so very grateful for each and every moment outside the walls of this hospital.

So I will repeat to myself Phil 4:13 all day long and I will whisper it in the ear of my beautiful baby girl who finally drifted off to sleep some time after 4 this morning.