She really and truly does. Since 6:00pm she has been in a large amount of pain. Her tummy, her bowel, her abdomen area is causing her great distress. She is pulling out her hair, her eye lashes, biting her own arms, it is the hardest thing I've ever had to watch. I can't make it better. I don't know what the rejection and the virus have done to her insides, but it is causing her great pain. I think its been 5 nights of this now. Maybe 4. I'm losing track of time.
We have used everything in our "arsenal" tonight. We were trying to spread it out, but she is breaking our hearts. The nurses are at a loss. So am I. We can't help her fight this. It really stinks to be 3 years old and be completely on your own to fight this tremendous battle. Oh, how I wish it were me and not her.
We have given, Tylenol, Lortab, and Benadryl. Its not fixing any of this. We were hoping for some relief from the pain and to relax her enough that she might fall asleep. She still moans, and screams out. Her face is twisted and contorted. She hurts really, really bad.
We had a pretty good day until 6pm. Her day started rough with the infusion, but then she settled and went back to sleep. She didn't wake up until 11(she is exhausted from not resting through the nights). Once dressed and awake we played and played. She watched Blue, read books, played with her blocks and sat up at her table and chairs. Things were good until the second infusion at 6. Its been none stop pain and discomfort with very little relief since then. I don't understand why the bowel locks up at night? Her tummy is hard and distended. Very little bowel sounds and once again a blockage of something(we are assuming its mucous again) and no fluid coming out. I know that if it breaks free she will feel a lot of relief. Until then she she grunts, and screams, and moans, and cries.
She has missed her naps the last two days only adding to her exhaustion. Each time I lay her down the cramping and the pain starts. I tried sitting her up this evening and she screamed louder and harder than I have ever heard. I know that Ash has been through much worse(her entire body cavity was opened up and her organs removed to put the donor's in), but she was always sedated. She doesn't remember hurting from all of that. Now she is aware of pain. She is fully awake. She gets it that she hurts. My heart hurts as I stand near her trying to comfort a pain that I can't fix.
I so badly want to have our happy toddler back in our home. The toddler who giggled, and caused as much mischief as she could muster. I want to watch Dave tickle her, and Blake snuggle with her. I want to listen as Allie lay next to her and talk to her as if she knew and understood all that she was hearing about the world of 5th graders. I can't believe we were there just 3 weeks ago without a care in the world. It seems like a life time ago. I think hospital life drains you. You lose all track of time. You are in a different reality. Its not real life. We're locked in a little tiny room, with no sunlight, no fresh air. Everything starts to run together.
I long for home. For yummy smelling candles. Fresh loads of laundry. Schedules. Toys to trip over. Therapy sessions. Ballgames. Lazy nights on the couches with the kids. The sound of Dave's voice as he laughs at Everybody Loves Raymond episodes for the hundredth time. Dinner messes. Chaos. The silence in our room is so loud. Its a reminder that they are not here with us. Ashley Kate doesn't talk. I talk to her and she just smiles, but she doesn't make a sound. I miss conversation. Home is where we belong. Its where the world is locked out and everything inside is just right. I miss that little yellow house and all it holds. Ash misses it too.