The marathon continues! This past week, Annie's progress has seemed, at times, almost immeasurable. Only in looking back at where she was a week ago can I really see that she is progressing. The most noticeable difference is that she no longer has any chest tubes as they removed the final two this week. Early in the week, the doctors decided to start her on a beta blocker for her arrhythmias. It has worked very well and since then, she has not had any more irregular heart beats. On Wednesday afternoon, Annie spiked a fever, and with a push from Cameron and me, they started her on antibiotics that night. The next day, her urine and several blood samples came back positive for infection. Although she didn't seem like she felt well, she thankfully, never got extremely ill from this infection. However, they had to pull her pic IV line because of the infection and have been unable to replace it now that the infection has subsided. This means that she is getting poked with needles all the time now as they try to administer her meds through peripheral IVs and draw blood from heel sticks. All this poking makes both Annie and me miserable. Her progress on the ventilator has been very gradual. They have been making minor downward adjustments on the support she is receiving and will continue with this until she hopefully reaches a level that could qualify her for extubation. There is concern that her phrenic nerve was damaged during her surgery, meaning that her diaphragm on the left side may be paralyzed. In the next day or two, they plan to run some tests to determine if this is the case. If it is, then she will likely have another surgery this week in which the diaphragm will be tacked down so as not to interfere with her lung expanding. This should not be a major setback, but is yet another obstacle for Annie to overcome.
I recently joked with Cameron that I am concerned about my social life as most of it now takes place in the CICU. The fact that I know all of the nurses, therapists, fellows and doctors so well has to mean that we have been here WAY too long! I have been lucky enough to meet and get to know some of the other families here as well. Every Thursday, the hospital hosts a parent hour and serves lunch to all those that have children in the PICU and CICU. In the beginning, I rarely went and usually only because the nurses gave me a hard time if I didn't. However, as time has passed, I have started going because I want to go. It is a chance to meet some of the other families and hear their stories. It is a chance to look outside of my own situation and see that others are suffering too. Everyone in that room is carrying a burden. From one family to another, the burden has a different name, a different course and a different prognosis, but the impact it is having on our lives is surprisingly similar. We all know way more than we ever hoped to know about whatever condition our child has. Everyone uses words that would not even be in our vocabulary were it not for our children. Sometimes the mood is light and social, and other times it is heartbreaking as feelings and thoughts are shared. Even though we are all such different people, we are bound together by this common denominator: each one of us has a sick child and each one of us is hoping that our child is going to get better and go home. For some, this hope is more realistic than for others, but we are all hoping, just the same. Any one of us would love for our child to be suddenly and miraculously healed, but I think most of us are seeking to find hope in a more likely outcome. My favorite doctors are those that give me accurate information and honest opinions regarding Annie (even if the news is not good), but still look for opportunities to be optimistic and hopeful. It feels like I am always walking a fine line between hoping for the best and preparing for the worst.
I have come to know that hope is essential for spiritual well-being. I am sure that this is why hope is mentioned so often in the scriptures and is even described as an "anchor" to our souls. I am still hopeful that Annie will come home and live a long and relatively healthy life. But I know that ultimately my greatest hope for her is in the promise of an eternity with a perfect heart and flawless airways. Come what may, this hope truly is an anchor to my soul.