Ashley's Story

She will leave fingerprints all over your heart



Ash has been roughed up.

She is bruised and sore. Swollen and hurting. Her tiny face is so swollen from the trauma of placing the line in the manner in which it had to be done. The incision in her neck is bloody, swollen, and bruising. Her right ear has blood dripping from it. Her chest is bruising darker and darker as the hours tick by. She is bleeding into her drain pouch from her g-tube and also from her stoma. Her little body is roughed up.

Her lungs are really junky and her breathing is loud. The cold in conjunction with the breathing tube that was placed has done a number on her. She is weak and exhausted. The smiley girl we knew just two days ago is gone tonight. She hurts. Its the only sign other than water we have seen from her since she woke up in recovery.

Her side is sore from removing the hepatic line. She has 3 wounds in that area. Its bleeding through the dressing. Her new line sight is bleeding through the dressing as well.

She fell asleep on her daddy's chest during our last appointment this afternoon and has been sleeping since. She received two doses of morphine in recovery and one dose of Tylenol around 3pm. We are counting the minutes down as we wait to give her more Tylenol to try and help ease her discomfort.

I'm thankful she can rest. She hurts so much and if she were awake it would be miserable for her. She cries out in her sleep and signs for water, but quickly drifts back off. She doesn't even open her eyes.

We are drawing insane amounts of blood. Really insane! I just drew 30ccs and placed it in tubes to be dropped at the lab tonight. I had already drawn 8ccs this morning. I have another 44ccs to draw before we can leave on Thursday. I can't even believe the amount of blood they are requiring for all of these tests. I'm breaking it up to twice a day hoping to give her body time to recover from the draws. In all they are wanting 82ccs of blood in three days! I have no idea what they will be doing with it all.

Ash has spiked a fever and Im going to give the coordinator a call to see if they will order a culture so I can drop off some more blood. Its a very scary thing for me to see. It was obvious to us that there was a skin infection around the old catheter and when it was removed in the procedure this morning we were told it gushed thick discharge for a little while. The doctor said it wasn't puss, but it was a thick fluidy discharge. The last thing we need is for that infection to have gone into the blood stream today. The first place it will migrate to is the new line and it would be a disaster for us. My stomach is sick about this. It really is. Again today we asked for some sort of antibiotic coverage to protect her from this happening and again they denied our request stating they would wait until she had an active infection brewing that showed signs like fever and such. If you know anything about us in real life then you know we would NEVER request an anti-biotic unless we both felt it was necessary and in Ashley's best interest. We are trying to protect her life and we both agree we should have covered her with something.

My hope is that the fever is just from the trauma and her bodies injuries. We just don't know at this time.

This is truly step one in a very long journey. Ashley Kate has an awful road ahead of her for a very long time. At the end of it our hope and prayer is that we would have made the right decisions for her. We are fighting for her life. Literally. It just hurts so bad to see what we elected to have her endure today as I watch her struggle tonight. My heart is broken knowing it is going to get much, much worse before we can give her back her carefree childhood.

I am exhausted. Emotionally spent. I am so drained from the fear, the anxiety, the stress, the worry, the everything. I'm so sorry I haven't returned calls and texts today. I'm just not up to chatting right now. I'm really not. I appreciate each and every call and each and every message sent. Love and appreciate you guys more than you will ever really know.


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