Searching

Still so sweet and so beautiful

Ashley Kate's labs came back in yesterday afternoon. All things indicate some type of infection is brewing...somewhere. We just don't know where. Could be ears, throat, teeth, blood, bowel, or urine. This is so crazy!

WBC were elevated, all "cytes" mono, luko, etc. were elevated, sodium was low, potassium was high, platelets were high, BUN just slightly elevated( telling us she's getting dry but not dangerous we are somehow staying on top for now), creatnine low, and so on and so on and so on.

The consensus out of Nebraska? Repeat all labs this morning and compare, add to that blood and stool cultures to attempt to find the culprit.

Not sure if anyone other than the parent of a terminally ill or chronically ill child can really understand how difficult it is to locate peripheral veins anymore. Every parent of every child who gets sick that I have ever known has said, "he/she is a hard stick". Yes, I agree, children are a hard stick, but children whose veins have been accessed daily, weekly, monthly for their entire LIVES are really and truly a HARD STICK. Its a whole new ballgame when you add in those two words chronic and/or terminal. Add to that the fear, the knowledge, the anticipation of the stick, the searching, and the digging around in their unusually tiny limbs(from being gut transplant kids with growth challenges) makes for a miserable experience. Truly miserable for them.

Peripheral sticks for labs or IV still remain the hardest part of the journey for me as Ash's mom. Not sure if anybody gets that, but I HATE lab work and HATE IV's. I can handle packing and dressing a wound with my very own hands that literally split her tiny body in half more than I can handle watching someone stick a needle into her hands, arms, feet, etc and begin to "dig" in an attempt to get a vein to roll under the tip of the needle. I begin to pray like you've never seen the night before her labs, begging for "our girl" the one who has gotten the best at getting blood from Ash to be working the next morning. Begging for just one or two sticks rather than multiple. Begging for Ashley's body to get so tough that she doesn't even feel the sticks. I know the Father must think I'm crazy on those nights and then the next morning as she goes in. Dave takes her into the lab and I stay behind praying, pleading, and begging. Then I anxiously wait for her to return home so that I can interrogate him and her with the same questions I ask each and every time she goes in. Its a crazy cycle.

So for the second day in a row we sit and wait results. Results that will give answers and direction. I want her labs to say, "All is fine, she's good, nothings wrong". Thats what I want to be told when those papers come across the fax machine. The blessing in all of this is that she is still home and she is stable. She is surrounded by her things, in her room, and by her family. She is comfortable and not scared. If we can stay here then we can do this. Its when we pack it all up that life spins out of control.

Our prayer is for her recovery of course, but also for her to remain home. Where she is happiest. Join us, please. Take care, Trish