...I wake up I keep hoping she's going to be better. Then when I see her I know she is not." - Allison Brooke Adams
Never have any truer words been spoken. This hospital admission has been one bad nightmare after another. It seems to never end. Each day something else goes wrong, more problems are discovered, and our Ashley slips further and further away from who she was a few short weeks ago. My heart is breaking for my daughter. How many times can I say that? How broken does it need to be for whatever this "purpose" is to be accomplished? "I'M BROKEN, I'M HERE. WHATEVER IT IS THAT IS GOING ON I GET IT!" Can we stop this now?
Last night Ashley's one and only accessible central line slipped. As we opened her dressing to clean around the wound I looked in the whole and saw the cuff that is supposed to be anchoring the catheter into her vein. My heart dropped. Instantly I could barely breathe. The line is still in the vein and functional, but it is NOT secure. I can't tell you how much I ache over this. "REALLY GOD? REALLY?" I don't get this. Its my only chance to keep her with us for any period of time. My only chance. Without this venous access no one can care for her and support her body. Without nutrition, albeit synthetic and basically death to her liver, her life can't go on. She will not survive. I have no idea what will happen today. With this infection I don't think they can take her in to even repair or attempt to reposition it. I can't do this. Does anyone realize this? I am not strong enough to do this anymore.
Ashley's weight is up even more this morning. The swelling of her abdomen is massive. She weighs 20.25 KILOS. 44.55 POUNDS! She can't even where a diaper or clothing! She is that big and is growing every hour. I'm told nothing can be done. NOTHING! I can't even lift her to adjust her on the bed by myself. If I can't adjust her positions for her how is she supposed to? She can't move she is so HUGE. And yet her veins are dry. Her kidneys are stuggling. She's not even third spacing that much. This is all her bowel. The loops of the bowel are filling with fluid and swelling the walls larger and larger and larger.
The pressure of the swelling abdomen has caused her to need oxygen support again. She can't breathe deep enough with all the weight pressing against her diaphram. She is stuck flat on her back. Unable to turn to either side because of the wounds on the left and the swollen stoma on her right. She is miserable. Unrecognizable. She is screaming non stop. Her voice is hoarse from all of the crying. We have to restrain her arms to keep her from ripping off her oxygen. She is so unhappy and it is destroying me. My sweet, happy, joyful baby is confused, and hurting, and angry, and so, so sad.
Allie is right. Every day I wake with hope only to have it dashed, destroyed, and defeated. This is not make believe. This is a real live nightmare. I can't wake up and make it go away.
Some relief has to come. If it means they take her to surgery today and remove this poisonous organ from her body then lets do it. My daughter needs help. She may be unable to attend her own party, she may be left on a vent, she may be septic from the poison spilling out into her abdominal cavity, she may die. We have to try. We have to help her. We have to.
I NEED a plan to give my daughter back some form of quality. This morning I will demand decisions be made on her behalf. Not another day of doing nothing. NO MORE. WE ARE FINISHED WITH THIS TORTURE. FINISHED!