My girl...

...is sick. I mean we all know that she's sick, but today she's really feeling sick. Not just a little, but really feeling awful. So much so that we have postponed infusion 4 until tomorrow. She's got a lot of issues all messed up on her labs so they are concentrating on trying to fix those things before continuing. We are basically attacking her white blood cells and wiping them out with the thymoglobulin. This is one of the reasons she's feeling so awful. For some reason I missed that part of all this. I didn't realize that's what the goal was. When the NP explained all of this to me this morning then it started to make more sense. This is why she's getting weaker and weaker and I'm not seeing her turn things around.

This is hard. It is so very hard. They described the rejection process to me this morning and compared the way she feels inside to having a sunburn. A really bad sunburn. Inside the bowel wall. Since she has no mucosa left, the protective lining of the bowel, then the tissue is raw and inflamed. So they said, "she's feeling like she has a sunburn on the inside of her tummy. Its that painful." We just gave her some morphine. Dr. G told me she is going to need the help to manage the pain. We have to help her.

On top of the pain from the rejection, she is vomiting this morning. Her weight is up over 2 lbs from fluid in all the wrong spaces. Her sodium levels are very low so thats where we started this morning. Trying to raise them. However, you have to raise them slowly. Too quickly cause nerve damage in the brain and seizures. This one did me in during rounds. Her surgeon was sitting on the edge of her bed going over all the plans with me and when she said brain damage, "we sure don't want anymore of that" all I could do was cry. Ash has to come out on the other side of this whole. I want her to be the person she was 2 months ago. I'm scared. They know I'm scared and they are too. All I could do was whisper that I want to take her home and Dr. G hugged me tight and said, "I want that for you too and if we get to the place where I don't think we can help her anymore then you know I will tell you." More tears.

Tomorrow they have decided to take her in to the operating room. Her biospy is scheduled for tomorrow and they are going to attempt to place another line to provide more access to get her through this. Her peripheral veins are no longer holding IV's and so we have to get to where we can give her everything she needs to beat this thing and stay hydrated all at the same time. Once she comes back from recovery we will pick back up with her thymo infusions.

There is a lot going on in her room everyday. Its busy and confusing. The brightest part of all of this is that her vital signs are so, so stable. Ash is breathing on her own comfortably. She has a good heart rate, normal respiration's and when not being infused with they thymo stable blood pressure. All of this very, very good. We all know it may not stay this way, but for today she's got these things going for her. Dr.G reminded me that she could get a lot sicker before she ever gets better. She wants me to be prepared for that. I know she can, but maybe she won't. I've got to keep finding things to concentrate on. For now Ash has stable vital signs.

I'm taking her outside this afternoon. Dr. G told me that I have to make her live through all of this. We can't keep her in this bed. She has to want to live. I have her stroller here with me so I'm going to load her up this afternoon with IV pole in tow and take her outside in the fresh air. Even if its only a few minutes. She needs to get out of this room. There are so many things I need to get sent here for her. Her Amtryke. Dave thinks its on the way. Her walker. She needs to stand up and take some steps. Motivation. I've got to get things here to motivate her to be awake, to inter act and to move.

We have lots of hard work ahead of us. This will not be easy for Ash to overcome and I know that. As her mom I have no choice to but to push her to keep living. I love her too much to let this beat her. We won't give up without a massive fight against this rejection. I want my girl back. She has to come back to us.