I had a lot of questions for Aubries Dr and yesterday he called to help give me answers. I did not get some of the answers I was hoping for. With all of Aubries recent episodes it seems that her current treatment is just not enough for her anymore. We are going to begin treatment with a lung transplant team, from my understanding she is not being listed anytime soon but she will be receiving a continuous IV pump. Without the IV it is possible that her episodes could eventually be more than her body can handle. I do not know when she will receive her IV line but I know its coming in the near future. Once she is placed on the IV line the line can not be stopped. She will need then line every day, every night and every hour. By stopping the pump it could end her life if not started back quickly. There are 2 options of IV lines. We have no idea which Aubrie will end up with yet. The first and most severe line (to me) would be a central line right through her chest directly into her heart. Which has so many risks one being a line infection. The second line would be a Sub Q which is an IV line placed somewhere throughout her body in which we would periodically have to change. There are some side effects for this as well one being this discomfort and pain she would deal with all the time. I can not sit and pray for one or the other right now, as I do not want her on either one. All I can ask is that the Lord direct us to make the right decision for her in the end. Please continue to keep us in your prayers. This IV line is her last option before needing a transplant.
Posted on: Sat, 09 Aug 2014 00:21:07 +0000
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