Long day...Long Night Ahead

Ash is back in her room. She finally made it out of recovery. The central line was replaced with a larger, shorter, double lumen and it was tunneled into her left femoral vein and exits out the side o her rib cage. It draws blood well and allows the ability to try and maintain her fluids and electrolyte losses while we are infusing her thymo treatments. Speaking of treatments the next one will begin at 8pm and run till 8am. We are getting her pre-meds together now.

Her bowel biopsies were taken and sent off to pathology and the GI doctor who did the scope and biopsies never showed up to talk to me afterward. This has never happened. A little disappointing knowing that my daughters life is at stake here, but oh well. I can't change it. I was allowed to read his notes in her charts and nothing he jotted down was good. I struggled to read his quickly sketched drawings and tried to make heads or tails of what he saw. The only thing I read that might be positive were two words...villi present. I think thats what it said. Other than than it basically said there was evidence of a raging rejection episode. On going. Yeah, that hurt. Just did. Somethings you would never care to see jotted on her charts like "failure to thrive" (never forget the overwhelming feeling of wanting to punch that neonatologist who first came up with that diagnosis) and raging rejection. Kind of had the same feeling of needing to punch the guy who wrote that. Oh, well I'm just being honest. If I was being totally honest with you I would let you know that I have felt like punching someone, anyone, for days now. I don't know why, I just want them to hurt like we hurt. Call me awful, but its true. I think it might make me feel better to hit something. I guess it doesn't need to be somebody. Just something.

Ash came out of the OR requiring oxygen support. She's still on a nasal cannula and I am so disappointed. Shame on me for even typing that the one thing we had going for us was her ability to breathe on her own. Someone must have read that and now they are trying to take that from her too. She's not happy about the oxygen blowing up her nose and is ripping it off of her face. This required her arms to be restrained. Yep, it is torture. It really is, but sometimes you have to restrain them to keep them from hurting themselves. If I hadn't witnessed using these on her before I'd be pretty upset, but in our world of chronic illness and hospital stays they kind of come with the territory. As sad as that may be.

She is so angry on top of being in a lot of pain. There is oxygen in her nose, restraints on her arms, a pulse ox taped to her foot(she's kept ripping it off too so they "secured" it with a ROLL of tape), and a blood pressure cuff thats going to go off every 30 minutes for the next 12 hours. What happened to her life? This is not the way its been the last year. She was so over all of this nonsense.

I had time to sit and visit with her surgeon after the line placement. I cried. A lot. I thanked her for doing what she's done for our family. Told her how very much Dave and I owe her for all the hours of work she has put in on our Ashley. We talked about the future. Not knowing any of the answers, but she let me cry about my baby. About my big kids. About my husband. She listened and said over and over again, "I know, I know". She allowed me to ask questions. Hard ones. Like if and when we had to approach a 2nd transplant would she support us. Who would be deciding if she could be listed and if her line access issues would sway her support. She was honest. Yes, we could be faced with deciding if we wanted another transplant for Ash. Yes, she would be one of the deciding votes on listing her or not. Yes, access would be the hardest issue to overcome. She was blunt and stated that she would not list her if they felt like she might fail. If anything pointed to a negative outcome, she would not support. She explained that the nature of the operation itself required upper access above the diaphragm in order to clamp off the vena cava. Ash has none. So... I cried. Hard. That means that we have to recover this bowel. We have to beat this rejection. We DONT have any other options. She also said she wouldn't give up easily on Ashley Kate. She is going to push and fight for the treatments to be aggressive although dangerous. There may be some very aggressive, inventive ways to secure upper access, but none of them are guaranteed. As always she told me she would let me know when we were finished fighting. When nothing else could be done for my baby. Dr. G sat and listened to my heart ache over what Blake and Allison and Dave are going through. She offered to talk to Dave on the phone if he needed answers or direction. I shared with her my fear of this outcome changing and shaping Blake and Allie's faith. I am afraid that my children would not be the same people they are today if we had to bury their baby sister.

All of this is so surreal. Its not what I'm supposed to be doing. I'm supposed to be home chasing after my almost 5 year old miracle as she pedals her Amtryke down the street. Thats what I'm supposed to be doing.

Wow, I have searched my memory a thousand times wondering if and when we missed something. Did we screw up as her parents and if we did how will we stand before God and say, I'm sorry I didn't take care of what you gave to me?" You can tell me a thousand times that it was nothing we did, that this is a problem at the cellular level, but the bottom line is that it was my job to take care of her and to protect her and look where she is tonight. Something happened I just don't know why.

Isn't it ironic that in order to have a chance at saving my baby we must first almost kill her? That is essentially what we are doing to her. We are wiping her out from the inside trying to get her cells to STOP attacking her organ. We are taking a beautiful child and reducing her to almost nothing recognizable in order to give her a shot at living again. This is so hard. So incredibly hard and tonight I have found myself exhausted. Physically, Emotionally, Mentally, and Spiritually. I just don't have anything left. Praise God tomorrow is a new day and His mercies are new every morning. I just have to get through this night.