It seems that what is happening just doesn't really happen. I mean the treatment for this type of staph infection in a central line catheter is to simply pull out the catheter, place a peripheral line, treat the infection for a few days with IV antibiotics, and then place a new central line. To leave the infected line in place is just not done, but it is what we have to do. So we will.
This means that we are going home with the line infected, continuing to administer IV antibiotics, continuing to use the line to infuse TPN, and live life to the best of our/her ability. Its what we have to do. Its our only option currently, and perhaps forever.
We will draw a weekly blood culture along with weekly labs to see if by any chance we might ever get an all clear, but its not really expected to happen.
Ashley Kate remains in stable condition. Our hope and prayer is that she stays that way. I will be doing vitals on her every 2 hours to stay on top of her situation and if at any point she declines we will call our physicians personal phone and make arrangements to have her admitted. Its the best we can do at this time.
We are having oxygen delivered to the house tonight so while she sleeps she can be supported with a little extra help during the times she needs it.
If her echo comes back with positive vegetation on her heart valves then it really changes nothing as far as treatment goes. We will continue doing what we are currently doing. It is unknown at this time if it changes transplant opportunities for us.
We could continue to stay inpatient, but after discussing her status with our physician he is in full agreement that she could live here in this hospital, in Shreveport at the hospital, in Omaha at the hospital, or at home during this course. We both choose home for her.
We are blessed to be supported and surrounded with a staff who wants the very best life for Ashley Kate. Her physician goes above and beyond to ensure she is being given every opportunity to live her life in her home. There is no price that can be placed on this.
Ashley is sleeping alot. She's tired. Her body is fighting an ugly infection. Her liver is acting up. Her heart is strong. Lungs are clear. She is temperature free. She's having no emesis. Her third spacing is being remedied. Overall she is as good as she can be at this time. Our hope is that she becomes happy again once she is home and settled into her favorite room underneath her apple tree.
It us unknown what is going to happen with her liver. We can simply wait and see what course it takes.
We have asked transplant for direction, ideas, courses of treatment, input. They currently have none but we are talking to them daily.
I want to be clear. Ashley is NOT dying today. Ashley is NOT dying tomorrow. Only God knows the moment that she will take her last breath. Personally I look at my daughter and I believe she has a lot of living left to do. She's just got an infection that is being stubborn. Please continue to pray and believe that she will get through this. We certainly do.
The discussion came up again this afternoon about having a DNR in place so the staff will know our wishes. Those letters are not in our vocabulary. Not now and probably not ever. Ashley is a fighter and guess what...so is her mommy and daddy. Funny how God put us together, huh?
I'm tired. Still calm and very optimistic. Ashley Kate is beautiful and when she opens her eyes and sees she is in her home tonight I expect a smile will creep across her sleepy face.
This is the same infection she contracted, the same exact bug, the day the line was placed in Nebraska. It is a hospital acquired bug. Not what we had planned on happening, but it has. The best we can do is keep fighting it so that we can give her the opportunity to be listed for transplant and hence the opportunity to grow up.
There are a lot of unknowns surrounding us at this time in our lives. The one thing I do know is that Ash is going home and she will be surrounded by all things familiar to her. She loves home. We do too.
Thank you for your kind words, your prayers, and your support. Thank you so very much.