Struggling Again

Ash had another difficult night and this morning we have increased her oxygen support to 4 liters. When we started the weekend she was only requiring 1/2 of a liter. She is struggling more and more for breath and she has begun retracting with each inhale. I don't know what is wrong this time. The team has written for an extra dose of I.V. lasix to try and pull some fluid off of her to potentially make it easier for her to breathe. We have postponed the CT scan until we can stablilze her breathing a little more. She has cried now for 2 nights, and Ashley never cries unless she is getting sick. I am concerned to see her begin stuggling again.

Another Pediatric Surgeon came in to examine her this morning. He is not convinced that the operation would help Ash. I got the impression that he does not agree that this a good idea. The transplant surgeon during rounds this morning told me that they just don't do this type of operation on any of their transplant kids. "It is not an easy undertaking." I also get the impression from him that he does not believe it is in Ashley's best interest to have her undergo such a difficult operation. He has written for a new med to be given in hopes that it will assist the stomach in emptying itself in the right direction. He is also hoping she might grow and the problems would begin to resolve themselves. I shared with you one day that Ashley's size has made the transplant more difficult on her. She was not even 14lbs. at transplant and the organs being placed into her abdominal cavity were a very tight fit. They are now laying in positions that may be causing her stomach not to have normal function. Obviously with growth she would have more room in the cavity and they would be a better fit. The problem we are facing is the fact that with her vomitting she continues to have life threatening episodes of aspiration into her lungs. These episodes are potentially deadly for her. So we are faced with extreme risk to Ashley regaurdless of the route we choose. So I find myself struggling with our options. What do we do? I really have no idea. The only thing I know to do is place her in His hands and pray that no matter what decision is made that He would protect our baby. I am again powerless. If ever I lived under the impression that I could control what happened in our day to day lives I no longer believe that. I have learned that each and every moment of my life and my children,s lives are determined by the One who created us. Honestly my heart knows that I would want it no other way, but my head continues trying to convince me that I can change the outcome of things. The only thing I truly have control over is the way that I react to what happens. Today I am trying to stay calm, trying not to cry, trying not to be discouraged. I pray that I will react to what we are facing in the right way, but I really don't know how I am supposed to.

I will post more this afternoon when I see how things are going to play out for us today. I would really appreciate your prayers for Ash. I am praying that she will be able to avoid that big machine that helps her breathe ( I don't want to say it out loud, but it starts with a V.) I am sure you know what I am talking about. Thank you for coming to check on our sweet Ashley today. It means so very much to me. God Bless. Trish