Request

This morning I approached our nurse practioner with our transfer request. She listened to our reasons and understood our position and said that she would bring it up to the rounding surgeon today. I have no idea if this will happen, but it is what Dave and I would like to have happen.

Our reason for wanting a transfer is simple. We are 700 miles away from home playing a "waiting game". Ashley Kate is no longer considered to be in a critical position. When we transfered out here a month ago tomorrow she was and it was necessary to bring her here in order to protect her life and her organs. She is now stable, on very little to no oxygen(only 1/8 of a liter while she is sleeping), and waiting for her body to stop transferring fluid to her lungs. We could be waiting for several more weeks or months for it to stop. If we could transfer home our support system would be accessible to me allowing me to rest and be a better mommy. It would also allow our family to be reunited. Blake and Allie could spend time with Ash daily as could her daddy. We truly believe this will only aid in her recovery. Omaha, NE is where our transplant team is. It will always be here. We chose this team knowing we would return her for Ashley's entire lifetime whenever she needed care. We love this team of doctors. We respect them. We trust them with Ashley's life. All of that said, we are doing nothing "magical" here during this current time. There is no plan to help Ash get better other than time. Who knows how long that time will last. 2 days? 2 weeks? 2 months? We could be here waiting for her lungs to heal for an indefinite amount of time. We sincerely do not want to burn our bridges or offend or go against any of our teams medical advice. That is why we must carefully balance what we feel is in the best interest of our daughter, of our family, and of our lives. We feel confident that this could be a safe move for Ashley at this time or we would not be requesting it.

So what needs to happen in order to get us back to Shreveport of Longview? A lot! First our team has to agree to let us go(not technically, but ideally). Second we must get our local doctors to accept her. Third we must figure out how to do it. I was warned this morning that insurance does not like to pay for a transfer to a lower care facility. Meaning they would not agree to med flight her for the transfer. On the other hand I was told, "but usually you can get anything accomplished for the right amount of money". Hmmm. What does that mean? We personally don't have unlimited amounts of money sitting around the house. The logistics of a transfer are basically a nightmare for our transplant coordinators and I'm not sure its one they want to have, but again we feel this is best for our family. So we asked today, and we will continue to ask until it happens or until Ashley Kate's "health" has been restored.

Ash continues to "pour" fluid out of her left lung. Why? It remains a mystery to all. Her chest tube is still in place and since last Wednesday evening around 9pm when it was placed she has put out 1200mls, or 40 oz. of fluid. It isn't slowing down. This is why we feel we could be here indefinitely. She has developed a cough since our move upstairs and has vomited a few times. Very concerning to us, but has not gotten a fever. She is not feeling great which is why I have not posted pictures of her yesterday or today. She just feels kind of blah. At this time she has fallen asleep.

Dave and I know we will be spending many months of Ashley's life here in Omaha, and because of that knowledge we would like to spend as much time as possible closer to home and to the family if we can. We feel it is now possible to be admitted to a more local hospital. When the time comes that Ash returns to a critical status, or if her organs are in jeopardy we will be on a plane and headed back for the long haul or however long it is necessary.

As her parents we more than anybody want what is best for Ashley Kate. If we make a wrong decision then we will pay for it forever and our family will never be the same. If our teams of doctors make a wrong decision life goes on for them and they move to the next patient. I mean no dis respect in saying that, its just the way it goes. She is our baby, our daughter, our life. We will do anything it takes to protect her.

If you think about it today any prayers for this request to transfer closer to home would be greatly appreciated. I have no idea how it is going to play out, but I rest in the knowledge that He already does. Have a blessed day. Trish