Each and Every Breath

Ash is truly struggling for each and every breath tonight. I don't like the way she looks. She has too much fluid on her body making it so difficult to breath deeply and fill her lungs with the air she needs. She is working way too hard. The distention of her abdomen is just adding to the pressure that is being placed on her lungs. Her fluid has third spaced and she is very, very huge. We have her on two liters of oxygen trying to keep her saturation's up. I don't like where we seem to be headed. It is so, so scary.

Ash is exhausted from the struggle. I keep encouraging her to just breathe... breathe...breathe. Her breaths are shallow and her respiration's are way too high. She is fighting against the nasal cannula and the memory of what the next step is frightens me. This is the slippery slope I knew we would be standing on the minute we returned. Once we start to slide getting back to the top is so very difficult.

Something that comes so easy for me can be so difficult for her. That breaks my heart. I breathe and don't even give it a thought. She breathes and it takes every ounce of energy she has in her entire body. Why is it so tough?

The cough that Ash has developed has turned into congestion only making it more difficult for her to breathe. Even though she needs the oxygen to make breathing easier for her she doesn't understand and she doesn't want anything to do with it. We have been holding her arms and hands down for the last hour trying to make her keep it on but she still managed to pull it off twice. They are now asking for an order for restraints.

Dave has gone to bed. His plane leaves at 4 tomorrow morning. I hate it that his last image of Ash is going to be watching her struggle for breath. I know it only makes leaving more difficult. Although my heart smiled when he came around the corner this afternoon I will be glad for Blake and Al to have their dad home. They need to feel some sort of normalcy. They have been so great and so understanding. Tonight Al said, "If her body doesn't want those organs then just ask them to give her someone else's before you come home." Even after all we have talked about her heart is still a child's and it is innocent and doesn't understand the sacrifice that was made to give Ash a chance to live. If only it were that easy.

My prayer for Ash tonight is that her little lungs would fill with air. Her kidneys might kick in and begin to pull the extra fluid off her body, and that her bowel would wake up and start to work. I hope I'm not asking too much. He already knows exactly what she needs so I'm just going to "let my requests be known unto God". Thank you again for loving her enough to pray for her. I will never be able to repay each one of you for all you have done. Just know that my heart is grateful and will always be. Good night. Trish



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