Monday morning, as I was reading articles online (I do this all the time right now), I decided to look up chylothorax (a condition that we believe Annie has and could be causing much, if not all, of the drainage from her chest). I had already read these articles, weeks before, but began to review them again. As I read about the treatment options for this condition, I realized that we have tried all but one: a thoracic duct ligation. We were planning to do this during her last surgery, but the night before she went into the OR, Dr. Burch let me know that he didn't think it was necessary and that he wanted to avoid having to operate on her right side, which he would have to do in order to ligate the duct. He proceeded with the surgery on her left side, and not only did she respond very poorly to the operation, it did nothing to decrease the drainage. After reading about the procedure on Monday, I started asking some of the doctors why a ligation was not an option at this point in time. After talking with several doctors, I realized that while I was not alone in thinking that this might be successful, Dr. Burch was opposed to doing the procedure. Hoping to understand his views better and to possibly convince him to try once more to resolve all the drainage from Annie's chest, Cameron and I requested to meet with him. Tuesday afternoon, we sat down with him and discussed the possibility of doing this minor surgery (of course, we know that no surgery for Annie is minor at this point). He let us know that he does not feel optimistic that a thoracic duct ligation will put an end to all the fluid and is concerned about how Annie will respond to any procedure, as she is obviously very fragile right now. He told us that he does not have hope that Annie will survive, regardless of what we do. However, he said he was willing to do the procedure, if that is what we wanted. Next, we met with the head of cardiology and he let us know that they had received word from Stanford. Interestingly enough, the only recommendation that they made was to do a thoracic duct ligation. After meeting with both of these doctors, Cameron and I decided to ask Dr. Burch to do the ligation. We are, of course, very worried about how Annie will respond to another surgery, but do not believe that we will feel peace in her passing if we don't turn over this one last stone. Dr. Burch is planning to do the surgery sometime on Friday.
What a long and difficult struggle this has turned out to be. When Annie was born, I could never have predicted that we would be here, almost four months later, still holding our breath in anticipation of what will be. In one moment, our hearts are filled with hope, and in the next, they are heavy with despair. Some days, I feel complete trust in the Lord to carry out what I know is His perfect plan, and others, I feel nothing but panic at my inability to control any of this. More than once, we have been taken to the brink of death with Annie, sure that she cannot survive much longer, and yet, she lives on. So much contradiction. So much back and forth. So little ability to keep the peace that comes and goes. Last week, I joked with one of the Nurse Practitioners that when our days in the CICU are behind us, I might need to be treated for Post Traumatic Stress Disorder. He quickly responded, in all seriousness, that this may indeed be necessary. This same NP spent almost an hour with me today, talking about the toll that all of this is taking on my life and offering excellent advice on how to cope with the immense stress and pressure that I am under every day. He was recently an LDS bishop and, because we share the same beliefs, we were able to talk about the spiritual elements of this journey as well. During the conversation, he referred to Jospeh Smith's experience in Liberty Jail. He pointed out that even though Joseph had already seen God the Father once, and Jesus Christ on more than one previous occasion, at this dark time in his life he questioned where They were. He wondered how They could stand by and watch his suffering without intervening. The Lord responded to his cry and promised peace and future blessings to Joseph if he would endure the trial well. I was so grateful that he talked about this, because every single day this week, I have read and re-read these exact verses of scripture and have felt some of what Joseph felt then. In spite of previous experience that has taught me otherwise, I have sometimes felt alone in this. At times, I have pled for peace and felt none. And yet, like Joseph, I have also felt His promise of future peace and blessings, no matter how Annie's fight for this life ends. I am holding fast to that promise and doing my best to endure this well.