Making the Best Decision

Its not always easy to do the right thing. It is not always easy to make the right decision. Its not always easy to keep from second guessing the decisions you have made. It seems as though nothing has ever been easy for Ashley.

This morning during rounds it sounds like we will be heading back into the OR to have a fundoplication (nissen) performed on Ash. It has been determined that "she continues to have life threatening episodes with aspiration due to severe reflux." Obviously this is not the news we had hoped to hear after trying to feed our Ashley for the last 14 weeks. I know that several children have had this operation done and that it seems to be a very simple surgery, but because Ashley is a transplant patient her situation is very, very different. When you take Ash into the operating room you open her up to a huge group of complications that a child without transplant would never face. Ashley will be opened up from the top to the bottom going through the same incision that was made for her transplant. She is at great risk for infection and for perforations to the grafts of her new organs. She will basically be starting back at the beginning as far as healing and progressing goes. Needless to say we are very disappointed and concerned about taking her back in. She will be on the ventilator and we will start climbing the same mountains to get her back to the place she is now and hopefully a little farther. They will be conducting a couple more GI series to collect some more data and then they will schedule surgery for sometime next week. A pediatric surgeon will actually perform the operation along with her transplant surgeon. Ashley's feeds will be stopped and then eventually started back at 5 ccs and hour. The goal still being 55ccs per hour to get her off of TPN completely. I am concerned about the prolonged use of TPN and its effects on her new liver. Making this decision is not easy, but I asked the surgeon this morning what holds greater danger for Ashley, doing the "fundo" or trying to manage her vomitting and praying she does not aspirate. Her answer was positively doing the operation. As tough as this is going to be for Ash, in the long run I pray it will help her to eat, grow, and live. Parenting is not an easy job. These decisions are difficult and painful to make. I pray we are doing the right thing. I know that the Father is watching Ashley and taking care of her. I know that when they take her from us and place her back in the OR that He will be there holding her hand while I cannot. I pray that this is the answer for Ashley. After this operation I am praying that she will come back stronger, healthier, and able to leave this hospital behind. Please, Father guide us through this decision making process, and allow us to take her home.

Our hearts are heavy. We are concerned. We are nervous about what the future holds, but we are confident in this: He has a plan for our daughter's life. He loves her and wants the best for her. He will not leave us or forsake us. He brought us to this place, and now we have to trust Him with her life. I pray we are making the best decisions for our Ashley.