Ashley's Story

She will leave fingerprints all over your heart


A whole new Kid!

What relief I felt this morning as I looked into her crib and she smiled back at me. I just knew it was going to be a better day and that we might have a whole new kid on our hands. Thank you Lord, because we do!

She isn't herself by any means, but she is so,so,so,so, so much BETTER than she has been the past two days. She is reading books, and signing, and playing blocks this morning. Over the weekend all she would do is cry and scream and scratch. She acts a little miserable, but not what we have been witnessing. Even her nurse came tiptoeing in the room with her fingers crossed hoping some of the effects would have worn off and immediately noticed a difference. I am so thankful she feels even the slightest bit better. I honestly didn't know how she could make it one more day the way that she was.

Her BUN(blood urea nitrogen level) is really high this morning. She is very, very dry and hence the swelling in her face has eased. Its not the way I wanted her face to return to us, but she looks more like herself. I am just assuming we will be getting fluid bolus' today. Just a guess. I also heard word that her scope may take place today instead of tomorrow. That would be good to see results a day or two sooner than we originally thought.

Her hemoglobin came up nicely with the blood transfusion and she looks better in her coloring overall. Its easy to drop your hemoglobin while being inpatient because we draw labs multiple times a day. I don't think she is having a problem with her blood level outside of this being the cause. Her lab work looks a little better overall. Still some "bumps" in it, but better than yesterdays. I haven't seen her Prograf or Rapamune levels yet(the immunosuppressant drugs). The high Prograf level only added to her discomfort yesterday because it makes them miserable when it gets to a toxic level.

She continues to stool out way to much. This is a concern that makes us wonder if the rejection is really under control or not. The only other explanation for it would be that her bowel is still needing to heal a bunch before it starts absorbing appropriate amounts. The key to discharge is low stool output, so we NEED it to start coming down into a more normal range.

If she is being scoped today then she will be NPO which means no food or drink. That's not fun when she is already dehydrated and signing for drinks and more drinks continuously.

Thank you so much for your prayers. It has been a very hard weekend, but things are looking up this morning. Ash and I are looking to make this our best week here yet. Lots of healing and good news is our hope. Healing means lower output and the beginning of feeds. Once those are accomplished we might get a ticket to go home. I'm thinking positively again. I really appreciate your encouragement and your prayers. I'll let you know if the biopsy is on for today or not. Take care my friends. Trish


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