This week has brought us to a new low with Annie. Before the week even began, I felt like I was close to reaching my limit. The daily trips to the hospital combined with the chronic worry I feel for Annie have brought on a fatigue like I have never known. However, it feels like every time I say that I can't do something, that something happens, and I am blessed with the strength to get through it. Maybe part of the lesson in this is that we really don't know our own limits and would all be surprised to find out that we are more capable than we ever thought possible. I pray that this is the case as we are as far as we have ever been from reaching a resolution for Annie. So much for deciding what I am capable of, as there is no opting out of this growing experience!
Monday, after they successfully replaced Annie's pic line, they took her downstairs to radiology to examine her diaphragm function and determine if the phrenic nerve had been damaged. The results of the test showed that her diaphragm was not paralyzed. At first, I thought this was great news, but it turns out that the doctors were actually disappointed by this because they would at least know what to do for her if this was the problem. They were hoping that, if needed, a plication (tacking down) of the diaphragm would help her make more rapid progress in being weaned from the ventilator. Even with this news, they were still optimistic about the progress that she was making and were even talking about the possibility of attempting extubation this weekend. Wednesday, they decided to put a chest tube back in as she had accumulated a fair amount of fluid around her left lung. Later that evening, she started having arrhythmias again and began to show signs of respiratory distress even though the ventilator was still providing her with a fair amount of support. This continued until Friday morning when they decided to do an MRI to see if her airways were still compressed or obstructed. The results of this test were not good. The bottom line is that all that was done surgically to relieve the compression on her bronchus has not worked. The aggressive surgical procedures have only changed the location of the most severe obstruction. She is trapping air in her left lung and, at this point, is essentially in the same situation she was prior to surgery. Making her problem worse, is that no one knows what can and should be done to help her. The doctors are putting all of their heads together to come up with a solution, but there is no doubt that the proposal they come up with will likely be experimental and somewhat of a shot in the dark as they have all let me know that Annie presents a very complex case for them. At this point they are trying to determine if the left lung is still viable as there is a possibility that it is too damaged to save. No one wants to do another open heart surgery to try and preserve an airway to a lung that is beyond repair. The next several days they will be working to determine what options they can offer for Annie. They will then be looking to Cameron and me to approve whatever creative idea they come up with. How's that for pressure? No matter what, we are likely looking at more surgery in the coming days. I can hardly bear the thought of putting her through this when she still has not fully recovered from the original surgery five weeks ago.
It is extremely difficult to do this day in and day out with no end in sight. Annie will be two months old tomorrow and she is still in intensive care. We want desperately for her to get well and come home. We want to see her smile and hear her cry. We want her suffering to end and for her to know happiness. Some days I feel like I am suffocating from stress and worry for my baby girl. This experience is teaching me what it really feels like to submit my will to His. I have been surprised at the freedom that comes when I am able to let go and turn it over to Him. I have known all along that this is in His hands, but I know it more with each passing day. I am completely helpless to fix her heart or help her breathe. Even the surgeon told us yesterday that while they are doing their best to find a solution for Annie, how this all turns out will be up to God. I am grateful that we all agree on this.