Ashley's Story

She will leave fingerprints all over your heart



That's the best word I can think of to describe where my heart, my mind, my thoughts are. Last night I admitted to Dave that I just feel such a heaviness all the time. It never gets lighter. Never easier. Its always there. Some days heavier than others, but always pressing down on me.

Ash is sick. She has been since Sunday morning. She was coming off of her 3 best days in over 4 months and I was starting to think that we were turning a corner. Just as my heart became light, the heaviness, the fear, the worry, the stress came back again.

Sunday morning Ashley woke up with a cough. A cough that caused her to vomit. Over and over and over again. By Sunday evening she spiked a high enough fever that we needed to send blood cultures. The fever lasted on and off for over 24hours. It finally broke for good last night, but the irritating cough remains as does the vomiting. The fever is scary enough in itself because of her pic line, but its the vomiting that brings me the greatest amount of fear. I asked Dave if he thought there would ever come a time in Ash's life that her vomiting did not send me into a panic, a sleepless cycle of sitting up and watching her for hours on end? He doesn't think it will come. I think I agree. Its been a year since she aspirated, but its the images of what followed that brief moment that haunt me. They truly do. She starts to vomit and I immediately drain her stomach, turn off her feeds and wait. She hasn't had hardly any feedings since Sunday. I am running everything IV. She is on TPN and a continuous maintenance of fluid trying to fight off dehydration. We drew labs yesterday and her BUN and Creatnine levels looked fine. No signs of dehydration.

Ash is grumpy, fussy, miserable. I have rocked and held her for 2 days straight. No sleep for any of us. Dave ended up in Blake's room last night trying to get some rest. I'm exhausted and stressed. My heart is heavy as I realize that it will never get easier for Ashley Kate. Its a continous cycle of ups and downs. A few days here and there of feeling good slipped in between each and everything that is going around. It wears on me. Which is why I haven't posted. I'm in a bad place right now and its so very hard to not allow the ugliness of the heavy heart I'm carrying slip into my writing. So thats the truth.

My prayers for her are so full of gratitude for her life and a pleading to protect it. I can't pray for Ash without falling apart. I so desperately want a normal life for her. Whatever normal can be achieved.

I think now that the fever is gone that she may start to turn around. I'm going to attempt feedings again today. Once the cough is gone we will have a little more sucess in that area. Ash has never been one to keep anything down once she starts coughing. That's the most frightening part for me. I know she needs the calories to help her body heal, but its the whole aspiration issue that scares me the most.

So I'm hoping for her to get well. She's on an anti-viral(has been since October) and I was hoping it would have given her some type of protection. She's already gotten viral pneumonia, RSV, and now this. Who knows what it is? It could be bacterial. It could be a line infection. It could be anything. I just want it to go away.

This is not the post I wanted to follow her standing video with so I have avoided it all together. I know how tired I am with the ups and downs and I can just imagine that you are all tired too. I'll be back soon. I think.


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