Losing Our Minds

Literally. Ashley's main issue today is psychosis. Lack of sleep. Going crazy from being locked up for so long. I think I am too.

In rounds the main topic was trying to restore her mental health. I know it sounds crazy, but this is were we are. She has only slept 7 of the last 48 hours. She is so exhausted she is requiring a small amount of oxygen support. Not because of her respiratory distress, but because of her mental distress. They have given her a sleeping medication in hopes of restoring her to some what "normal". Her chest x-rays have shown no increase in the plural effusion and that is a huge blessing. So far it looks as though her body is handling the fluid.

Again we expressed our desire to transfer. Again we were told, "We just want to watch her for a couple more days." This is the part that is making me crazy.

Ashley has not seen Blake or Allie or her grandparents in over 30 days. She has not seen the sunshine or felt fresh air for more than 30 days. She needs this transfer. Desperately. It is beginning to affect her mental health and the team agreed with us this morning, but they still want to watch her and try to get her to behaving "normally".

I don't know what is going to happen from here. We will continue to monitor her fluid status. They agree that it could be done in any hospital in America, but they still want to be the ones to do it. Dave has tried to call and speak with the surgeon but to date has not received a phone call back. He did share our position and concerns with 2 coordinators by phone yesterday and they said they aren't sure if the doctor will have the time to speak with him. To be completely honest we find that unacceptable! Our local doctors always have the time to speak with us. The doctors in Shreveport returned Dave's call last week at 9pm. No matter what your schedule as a physician you can find the time(even after hours) to return calls. Even when Dave is too busy to take calls because of his patient load he makes it a priority to return calls after hours or the next day with an apology for the delay. We know first hand that the time could be found to speak with him. They don't want to find the time.

Before anything else happens to Ash we need to get closer to home. Her white count is back to normal and her fevers are gone leading us all to believe it was more than likely the placement of the chest tube causing her an infection. Today we are praying for her to come back off of oxygen and to be able to go outside this afternoon. We are hoping for Ash to "return" and for her psychosis not to. We know that God can work all of this out. We haven't forgotten any of that, but it doesn't make the waiting any easier.

I still can't believe that we are remaining here in order to treat her "mental" condition. That knowledge is causing me to have a mental issue myself. Just another crazy day in the life of transplant.

Edited: A knock at the door to tell me we are going to start adding a micro lipid chain of fats back into Ashley's tube feeds. We need to see if the chylus returns. We will know by watching to see if she develops more fluid into her chest. If that happens then we will have to begin giving her lipids twice a week through and IV. She will probably be on this no fat formula for the next 3 months. If we don't get some type of fat into her diet then things will not go well for her.

I sit here stunned thinking we had fixed this issue only to find out we have the potential of huge issues hanging over our heads. If this doesn't work I don't know what we will do. We need to work on this closer to our home. I just can't believe that God planned for me to raise Ashley Kate on my own in this hospital room in Omaha, NE. At some point we have to bring her closer to her family. If she has to grow up in a hospital it HAS to be one close enough for her to maintain a relationship with her dad, her brother, and her sister. My heart hurts!