Annie is still moving towards extubation. She is so close! The doctors will probably be attempting it within the next week. I want so much for her to be successful, but am trying to prepare myself in case she is not. This week has had challenges, but thankfully, the ventilator has not been at the top of the list. Over the last few days, Annie has struggled with fever, clots, arrythmias, high blood pressure, pain, diarrhea, withdrawal, and absorbing her nutrition. How's that for a list? Most of these things are improving. She has a large clot in her SVC that will likely take months to resolve and her nutrition status is still causing a fair amount of concern. For now, the doctors have decided to stop feeding her through her NJ tube and instead are going back to IV nutrition. This is frustrating, because nutrition would help her get stronger in every way, and can become life threatening if they don't eventually figure out and remedy the problem.
Life is never dull with Annie. She is, no doubt, keeping everyone on their toes. One of the surgeons said to us two weeks ago, "Annie is fascinating. Even when I go on vacation I get all kinds of email about Annie!" The cardiologist on service this week told Cameron that everyone is flustered because Annie is so complicated and never does what they expect her to do. Last night the intensivist commented that Annie must be a "thrill seeker," because she seems to prefer living on the edge. We hear things like this almost daily, but they are always said with love and regard for Annie. Everyone told us that this experience would be a roller coaster ride. I believed them, but was still unprepared for just how big and long the ride would be. One day we are up and the next we are down. No two days feel the same! People ask me all the time how I am coping with all of this. I hope this blog has been honest enough that you know that I have had plenty of hard days and tears, but in general I feel like I am coping pretty well- much better than I ever would have guessed I could. So, last night, I woke up at 3:00 a.m. and could not sleep. This was unusual because I was not feeling particularly worried about Annie. Again and again, I felt prompted by the spirit to share where I find strength in all of this. This is the thought that kept coming to me: as unpredictable, frightening and frustrating as all of this with Annie has been, some things in my life have remained rock-solid, un-changing and constant. These are the things that have kept me grounded and given me strength through all the ups and downs. These are the things that have made this seemingly unbearable trial, bearable.
The first is my testimony of the gospel, and particularly of the Book of Mormon and the Priesthood. These two things have brought the spirit into my heart and life when all else was chaos. There have been times when I have felt so powerless and scared with all that is happening, but I have always been able to find comfort and direction in these two sources of His word for me. I feel deep gratitude for this blessing in my life. I know that this would be an entirely different experience were it not for my testimony of these things.
The second is the love of others. I have said it before, but feel like I can't say it enough. Your love for Annie and our family has been such a blessing to us. I feel like we are the service project that won't go away, but you just keep responding with endless love, prayers and kindness.
The third thing that has been with me through all of this is the love of God. I was promised early on that He would be with me through this entire experience and I know that He has. I really know that there is purpose in Annie's suffering and that in spite of these hardships, our Heavenly Father's plan is a plan of happiness. I know that I can trust Him to bless my life and Annie's life with happiness among these trials. Last night, the words that kept coming to my mind were: "Constant He is and kind; Love without end." I knew they were from a hymn but could not think of which one until this morning, when I remembered that they were from the hymn, "Where Can I Turn For Peace?" How fitting, as this was the very subject that was on my mind.
There is little about this journey with Annie that has been peaceful, and yet, in my heart, I have felt mostly peaceful. I know that it is these constant sources of strength in my life that have blessed me with this peace.