Ashley's Story

She will leave fingerprints all over your heart



...we will be discharged.


It won't be this morning, or even this afternoon, but by evening I should be tucking this beautiful girl into her bed and kissing her sweet forehead through the night as well as her sister's and brother's.

So far it looks as though we caught this infection early and because of that have saved our sweet Ash from going the other way on us. Thank you Father for sparing her from the worst of what this bug can do!

Last night the doctor agreed with us about Ash's x-ray. He too was not overly concerned knowing what her lungs have done in the past. This is just a little blip and should resolve on its own.

She is still very, very heavy. Making progress, but weighing over 15 kilos. The fluid should continue to be drained by her kidneys and finally all come off. Her BUN has recovered, but her Hemoglobin and Hematacrit have dropped once again, requiring her to receive a blood transfusion throughout today. It will take 3 hours for the blood to arrive, 3 hours to infuse it, and another 3 to monitor her before being discharged. Its going to be a long, frustrating day for Ash having vitals taken every 15-30minutes for almost 6hours, but in the end will prove to have been worth it. She will recover and feel much stronger and energetic for the remainder of this week and on into the weekend with the blood on board. The infection has gobbled up her red blood cells and that in combination with the drawing of daily labs have depleted her reserve.

How and where did Ash get this infection? I've been struggling with that all this time. I know I can't prevent this from happening forever and that eventually with a central line its going to catch up with you, but still it haunts me. With the bug that grew back on her cultures I think I may know what could have caused this and will be changing things in hopes of not having it happen again. Currently Ash receives one bath a week. Let me explain that better. One bath in a tub of water. She is given a "sponge bath" each day and cleaned, but once a week I sit her little bottom in a small amount of water in the tub to clean her well. Because of where her line is placed(right above her very deep transplant scar. The line dressing covers the insertion site and the top of this deep incision scar.) it makes washing her extremely difficult. In addition to that problem she still has her ostomy. Bathing is not easy as I am constantly worried about transfer issues. Especially the older she gets. Since she doesn't stand or walk getting her in and out of the tub is very, very hard on me. Anyway, I believe that water from her bath pooled in her incision and transferred a bacteria to her line. I thought the culture would have shown that I transferred something off of my skin onto her line or that e-coli from her bowel would have been transferred there. This is not what happened and I'm so grateful for that because the guilt is an enormous load to carry. Anyway, I will not be giving her that one bath a week until this line is removed. We will continue to sponge bathe and wash her hair on the bed and do our best to keep her completely out of the water. We aren't completely sure this was the scenario, but it does make the most sense. Ash won't mind because she HATES the bathtub.

So once we are home I will attempt to catch up with the kids and figure out how to get all that the rest of this week holds for them accomplished. The schedule is as crazy as it can get and would be impossible without the help Dave's mom is giving. I'm so thankful she is in town this week and so willing to help. Its only Wednesday morning and we still have 3 baseball practices, 1 dress rehearsal, a math Olympics(in Plano), a speech meet(in Henderson), a performance in the school play(remember my kids are the thorns?), a soccer game, and a baseball tournament at the Field of Dreams in Mansfield(you guys guessed right). Life is crazy, blessed, and fun! I'm just so grateful sweet Ash is getting well and we will be discharged in time to take part in some of it(I mean I will. She will be resting at home for the next few days.) Anyway, I'm grateful. So very grateful to the Father for His mercy, His love, and His blessings.

Have a great Wednesday. Hope your week is blessed. Trish


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