This last weekend was spent running tests and scans in an effort to acquire as much information as possible to help the doctors come up with the best possible solution for Annie's predicament. The good news is that they believe that her left lung is viable and can be saved if the airway to it can be restored. After many days of deliberation, today in conference, a consensus was reached and Annie's second open heart surgery has been scheduled for tomorrow morning. While I am far from thrilled with the idea of another surgery, I have accepted that Annie does need it and it really is our only option at this point in time. She has been declining steadily for nearly a week now and the surgeon feels that the only way she will get better is if they can somehow relieve the pressure on her bronchus and normalize the pressures in her left lung. After much discussion, the doctors have let us know what procedure they feel will give her the best chance at regaining this airway. None of the options discussed are perfect and all of them have consequences that could present complications in the future. The decision has been made to replace her entire main pulmonary artery and left and right branches with a 'T' shaped homograft, allowing them to lengthen the branch pulmonary arteries. The thought is, that with this extra slack in the pulmonary arteries, the aorta, with its much higher pressure, will be able to successfully hold them off of the bronchus. Of course, there are negatives to this procedure, even if it works. First, there will likely not be room to leave the valve conduit that they put in during her previous surgery and the doctor will instead sew a flap into the homograft to help reduce the high volume back and forth flow. The valve that they placed last month is already leaking significantly so they don't believe that this will make a great difference in the immediate future. However, there is some concern that the homograft will make it difficult for them to place a valve later in life. The hope is that, as she grows, there will be room for both a homograft and a valved conduit. The other negative to this procedure is that, just as a valve does not grow with a patient and has to be replaced in time, this homograft will not grow with Annie and will need to be replaced several times during her life. The homograft will mean that her future surgeries will be a bit more complicated and invasive than they otherwise would have been. It is hard not to worry about what our decisions today will mean for Annie down the road, but the surgeon told us yesterday that we are at a point with Annie where we need to make the decision that will help her the most now, as otherwise, there will be no need for future decisions. A sobering thought and good advice. While we know that this is essentially uncharted territory for the doctors, we remain hopeful for a successful outcome.
This morning, I was given a copy of a talk from General Conference by my friend, Annette, who works here in the PICU/CICU. The talk was given by Dieter F. Uchtdorf in the last Priesthood session and is titled, "Continue in Patience." Her timing in giving this to me was perfect as I have been so frustrated with the length of Annie's hospital stay and have felt even more discouraged now that we are basically starting over again. Waiting has never been one of my strengths. Beginning on the day we found out about Annie's heart, I have struggled with the waiting all along the way. Some days I think the waiting might just be the hardest part. Even successful surgery tomorrow will not bring a final resolution as we will always be looking ahead and waiting for her next surgery and challenge. In my frustration, I keep wondering what is to be learned in all of this waiting. What good could possibly come from Annie's continued struggle that goes on and on and on? In this article, I received my answer. The lesson learned in the waiting can be patience.
In his talk, President Uchtdorf said, "Patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can- working, hoping and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring, it is enduring well! Patience means accepting that which cannot be changed and facing it with courage, grace and faith. Patience means to abide in faith , knowing that sometimes it is in the waiting rather than in the receiving that we grow the most." He then said that "Often the deep valleys of our present will be understood only by looking back on them from the mountains of our future experience. Often we can't see the Lord's hand in our lives until long after trials have passed. Often the most difficult times of our lives are essential building blocks that form the foundation of our character and pave the way to future opportunity, understanding and happiness."
The waiting is always going to be hard for me, but today I have a new appreciation for the blessings born of patience.
Amy, I am so happy that Annie's lung is viable...I prayed and fasted for that tiny little lung on Sunday!!!! I know you still have such a long road ahead of you but I feel so happy the lung is okay. We will be there tomorrow....Abby's surgery is right after Annie's!!! I hope all goes well and Annie and Abby will be in my prayers tonight as well as their surgical teams. Sending you more faith and prayers.
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Nikki
Praying.....
ReplyDeleteYou all are in our prayers and we can't wait to see you guys sometime soon. I LOVE the patience talk -- it impacted me deeply. I'm so glad you love it too. We will pray for Annie tonight in our family prayer.
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The Daley's
amy
ReplyDeleteWe will be praying for annie as always. sending our love to you both ......Ivy Murphy
Interesting how the Spirit moves those around us. When I read that article I thought of you and hoped that you would somehow find it and find some solace in it. My experience has been exactly that and I know that some day you will look back at this and think, "how did I do it" and you will know that the Lord was with you all the way. We made a special trip to the temple on Monday, knowing that you would be making this decision this week and put your names on the prayer rolls. I'm sure others are doing the same for you in temples everywhere. We love your family and you are always in our prayers.
ReplyDeleteJanna and Jerry
Amy, I can't believe how unbelievably strong you are. Keep up the faith. I am keeping you in my prayers.
ReplyDeleteGreat read thank youu
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