Ashley's Story

She will leave fingerprints all over your heart


They Just Don't Know

The last two biopsy's have everyone shaking their heads this morning during rounds.

The transplant surgeon told them to call pathology and let them know he would be coming down to view the slides himself. All of them. He wants them pulled and waiting on him to finish rounds.

Rejection? Infection? CMV? All of the 3? They still can't decide, but they do know that she HAS to be treated if it is any of them and at this time her rejection has not been treated for more than 10 days. That is unbelievable. He is adamant that they figure something out.

If it is(which they still lean very close too) then Ashely will be in the OR with the head of transplant surgery this afternoon or early in the morning while he attempts to place a temporary triple lumen into her chest. She has to have enough access to be able to give the next round of treatment. The next drug is called thymoglobulin. The first infusion will last 24 hours. The main side effects are extremely high temperatures and a drop in blood pressures. Because of this they need access to give her the drug, more drugs to counter act complications from the first, and nutrition. She is currently not receiving any since the nightmare a couple of nights ago with her blood sugar.

Ashley Kate's blood counts have been wiped out from the administration of the gancyclovir. She is unable to really open her eyes, or actually be awake today because she is very, very weak. Her little body is pale and she sleeps now with the help of the Lortab.

Everything is up in the air. No one agrees about her current diagnosis. They all just know that her bowel is very damaged and looks awful. Outside of that we have no idea what direction her care is going to take.

I sit this morning, in the dark, listening to the sounds of classical Christmas, and watching our baby rest. Dave and I are doing our best to wrap our minds around the holidays spent in this room again. We must give the children a choice as to where they would like to go and what they would like to do. More than likely it will be Dave and I and Ash alone again for Thanksgiving. I am afraid that we may just start skipping thanksgiving cause its just not what it used to be. Our hope is that we might be far enough along to at least be outpatient or into the cooperative care program by then. Everyone keeps asking when the family will be able to visit. Unfortunately the soonest visit will be the weekend before Thanksgiving, and if the children choose to go to Oklahoma or Colorado with our families then I will not be seeing them for a very, very long time. Holidays in the hospital are nothing special. There is no magic and no sense of privacy or family. They don't even allow us to have a Christmas tree for our babies(although I PROMISE you we WILL be breaking that rule if we are still here, and I won't even apologize for my rebellious tone in this area). Asking Blake and Allison to spend the holidays here is just not fair and so we choose to allow them to choose. If they come, that is great. We do our best to make it special. If they choose not to come, then my sister's step in and do an amazing job making memories with them. Currently the plan is that I will see at least Dave on November 21st. Oh, how I pray God steps in and turns this around so that I might see the children soon.

At this time we sit and wait to see if we are headed to the OR.


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