Ashley's Story

She will leave fingerprints all over your heart



I woke this morning to the sound of Dave and Ashley Kate giggling next to me. He had picked her up from her crib and placed her in our bed on his way out the door to the office. She was smiling and clapping. Giggling with joy as the new day began. In all actuality I had been lying there listening to her giggles and applause from across the room as he showered. I'm not sure why she was so, so happy early this morning, but I wish for her sake it would have lasted.

An hour or so later she began crying. Then screaming. Inconsolable. It lasted for the next three hours. No matter what I did she couldn't stop. I changed every dressing possible looking for the culprit and finally found it. She was having a breakdown over a breakdown. Underneath her ostomy appliance her little skin had broken down overnight and once she began to move around it must have caused her great pain. I cleaned it up and dressed it the best I could, but it didn't ease her discomfort. When the skin gives way underneath all that constant adhesive(she wears the appliance 24/7) it really gives way. I noticed that it was a little red yesterday and I treated it with skin barrier, but by this morning it had begun to bleed. It is raw underneath the adhesive and I have no choice but to place another appliance on top of it. This is another one of those areas of bowel transplant that I really and truly hate for her. The medications that she takes keep her from healing quickly. I have no idea how long her skin will ooze and bleed, but I will try my best to keep it as dry and clean as possible hoping for no infection.

She is resting now after another 2 hours of continuous crying and screaming. I gave her a dose of Tylenol in hopes of helping her with her discomfort. We hate to give Tylenol because of its harmful effects on the liver. Especially since hers is transplanted. She was able to fall asleep, but I'm not sure how long it will last.

I sent off more lab work this morning just to make sure nothing else is up, but I have not seen the results of it yet. I really and truly think our problem is the breakdown.

Forget everything I just typed. Ash just now woke up screaming and then vomited everywhere. Now what? She has no fever, but the first place we look is her line. I'm calling for new orders to send a line culture. Again. Please pray for Ash. Pray that nothing is going on with her and that she just has a tummy ache of some kind. She is not stooling out. Her feeds have been running at full strength. She's had no temperature since that low one early last week that only lasted for a couple of hours. That line culture grew out nothing. She has fallen back to sleep. Naked, but I don't dare wake her trying to dress her. My hands are shaking and my heart is pounding. I never know when things are going to be serious or just a normal kind of kid thing. I pray this is nothing. I'll let you know something when I know something. In the meantime I thank you in advance for your prayers for our pickle. trish


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