Ashley's Story

She will leave fingerprints all over your heart



Not our attitudes, but our baby. I have honestly never seen so much snot in my life! This child of mine coughs snot bubbles out of her mouth! I know its a little more than you bargained for when checking in on her this morning, but its true. I've never seen this before. She doesn't know how to blow her nose. I keep suctioning her as much as I can while wrestling her arms and long legs(I've got bruises on my chest from being kicked in mid suction). I'm giving her breathing treatments and the like, but nothing is changing. I keep telling Dave that I just don't get it. They prescribe her meds for EVERYTHING under the sun but no one can give her any thing to dry up this snot? I just don't get it. Until this snot issue is gone she will continue to cough and gag on it which in turn is causing her to vomit which in turn is causing her to become dehydrated. What a nasty cycle she is stuck in. She remains on 24 hour TPN and no feedings. Feeding her is pointless. Its dangerous and would only cause her more trouble.

Other than the snot, the coughing, the gagging, and the vomiting, I think she is feeling a little better. Last night she stole my heart as the lights were turned out and she was tucked in next to me. Her little face glowed in the dark as she smiled and played trying to convince me that sleep is not a necessity. She shared more smiles with me in the dark last night then I have seen from her in over a month. It was sweet and it was precious. I told her over and over again how much I loved her. Once she did drift off to sleep all I could do was stare at that face I love so much. Her long lashes, rosy cheeks, tiny nose, and red lips. I just love every detail of her face.

I'm so ready for her to get over this nonsense and just feel good again. I usually love the spring and all that comes with it, but this year summer and warm days can't come soon enough for us. I need her body to have a chance to be well and not be surrounded with all this RSV,FLU,COLDS, VIRUS', and ALLERGIES. This time of year is a nightmare for transplant patients.

I missed being home Monday of this week and so the laundry has officially taken over our house. I'm washing load after load each and every day trying to get it caught up, but honestly the more I wash the more it multiplies. The kids both have practice this afternoon( I love that!) and then Dave finishes up his week in the office today. Tomorrow he will be able to help me by watching Ash or folding laundry and then we will spend the afternoon packing the RV for the tournament this weekend. The Tarheels are playing in Euless this weekend and we are SO excited about the talent on our team this season. I think it may be the strongest team we've had in a while. I can't wait to see it all come together for them.

Life is back in full swing for us in this house. The only hitch is that Ash isn't quite as healthy as we would like for her to be. The whole TPN/no Feeding thing worries me more than I like to admit. It was the TPN that destroyed her liver a little over 2 years ago and almost took her from us. Knowing this necessary poison is all that is keeping her from fading away at this time is bitter sweet. I'm thankful for it, but hate it all at the same time. Well, Dave will be home for lunch in less than 20 minutes and I haven't even started cooking. Guess I better figure something out soon. For some reason he thinks he needs lunch or something. Guys are funny like that. Hope your days are busy and blessed. Mine are. Talk to you soon. Trish


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