The past two days have been the most difficult of my life. I know I have probably said that in more than one previous post, but the statement is again true. Annie came out of surgery Friday night and things looked good. Her chest tube output seemed to be slowing and she appeared to be stable. However, within a few hours, she took a turn for the worse. To begin with, her arterial line went bad. This line is used to draw blood and is very important because blood tells the doctors all kinds of critical information about what is happening inside of Annie's body. We were so grateful that the fellow on for the night was able to place another one, but within a few short hours, this one went bad as well. This time, the doctors were unable to replace it. By 11:00 pm, Annie's abdomen started to swell and this continued throughout the night. By the next morning, she was in really bad shape. She was extremely swollen, and the emergency we had worried about the previous day was now a reality, as the doctors did not have the IV access they needed to draw blood and give her all the medications that she needed. They were doing heel sticks to get her blood gas levels and the numbers showed that she was dangerously acidotic. And, because of the massive swelling, they were having a difficult time successfully ventilating her, which was making her even more acidotic. Bottom line: our worst nightmare was coming true. We woke up Saturday morning with very heavy hearts as we knew that if things did not change for the better very soon, our Annie would not be with us much longer.
When we arrived at her room Saturday morning, the doctors wanted to meet with us in the conference room- never a good thing. Everyone was stressed and emotional as many believed that Annie might not even make it through the day. The doctors sat down with us and let us know what a predicament Annie was in. Dr. Delgado explained that we HAD to have an arterial line (most of the doctors were unwilling to attempt this because of Annie's extremely fragile condition, but thankfully, Dr. Kaza wanted to try and get one with a "cut-down" method). Annie needed her ventilator tube changed because the one she had had a significant air leak and they needed to get a better handle on ventilating her. And, they felt that placing a new drain in her abdomen was their best shot at removing fluid and reducing the swelling and pressure in her body. Dr. Delgado told us that she believed that all of these procedures carried great risk to Annie and that any one of them could cause her heart to stop. She needed to know if we wanted them to do CPR if it came to that. Wow. This is the conversation that no parent ever wants to have. Thankfully, our bishop was with us in this meeting and we were able to counsel with him in this decision. In light of the blessings we and Annie have been given and the direction we feel we have received from our Heavenly Father, we told the doctors that we were not ready to give up on Annie and if she needed CPR we wanted them to provide it. We sensed that some felt that this was the wrong choice, but as Annie's parents, it is our job to advocate for her and do what we think is best. While we don't want to see her suffer endlessly, we want to give her every opportunity for life and know that this would bring us peace if she were to pass away. Thankfully, it never came to that. They did all three procedures and Annie's heart tolerated all of them. Dr. Kaza was successful in placing both an arterial and a venous line. The art line has been temperamental, but everyone is taking great care to treat it with every precaution so that we can preserve it for as long as possible. The breathing tube was changed out for one that is a better fit and they have been able to ventilate her more adequately since then. They placed the drain in her abdomen, but were disappointed when only a small amount of fluid drained from the tube. They were hoping that placing the drain would make a significant difference in the amount of swelling that Annie has, but it has not.
Today, Annie is doing slightly better. Not great, by any stretch, but a bit better than yesterday. She is still very swollen, but her blood gasses have improved and she is no longer acidotic. Yesterday Dr. Kaza recommended to the CICU doctors that they work to support her through these next few days and let her let us know if this is something she cannot recover from. He told us yesterday that he is deeply religious and the eternal optimist and he thinks it is too soon to give up on Annie just yet. He said he feels that it is our responsibility to do everything we can for her, making sure she is comfortable, and leave the rest to God. We feel very good about this plan and are so grateful that he was willing to intervene when others were not, for his kindness to our family, and for his determination to stick with Annie and give her the best possible chance to recover from all of this.
There has been one moment in this experience with Annie that, in a way, sums up all of it up for me. Four days after Annie's first surgery, we lived through what Cameron refers to as "Black Monday." Until this most recent weekend, "Black Monday" was the closest we have ever come to losing Annie. Her heart rate was sky high most of the day and after calling for the crash cart twice and administering every medication possible, the doctors were running out of options to help her. I had listened to her heart beat between 200 and 240 beats per minute on the monitor for most of the day. Around 5:30 that evening, the surgeon came to her room and within a few moments, he was preparing to go inside her chest. I was in shock. I could not believe that they were not asking us to leave the room (I definitely didn't want to leave, but until this point in time we had never even been allowed to be in the room when they changed her bandages). We stepped outside her door, so we would be out of the way, but I was able to watch everything that was happening in that room. When Dr. Burch removed the bandage from her chest, I immediately saw her tiny beating heart. It wasn't until then that I really knew how scary this all was. Even though I had listened to her heart beat all day, I didn't grasp how fast it was beating until I saw it with my own eyes. It was as if her heart was panicking, beating faster than I could bring my two fingers together in sync with it. Seeing it helped me to understand why a heart beating that fast could not sustain life. There was simply not enough time for it to fill with blood and pump it to the body. I watched the doctor hold her heart in his hand and lift her lung in an effort to place another chest tube that he believed could help her. While he was doing this, her heart slowed down and the monitor showed that it was beating in the 140s. Perfect! I was so excited and felt sure that he had fixed whatever the problem was, but by the time he replaced her bandage and stepped into the hall to talk to us, her heart rate was again above 200. I was so frustrated and expressed to the him that he must have placed the tube in the wrong spot, as her numbers had improved for a time but were now worse again. He very patiently explained to me that this had nothing to do with where he had placed the tube. It was actually the pressure of his hand on her heart that had helped it to calm down and slow to a more reasonable rate. He told me that it was unreasonable for someone to hold her heart in their hand until she got better (I volunteered, but he gently declined my offer).
I think about this day often. Partly because it was such an unbelievable experience, but mostly because it has come to symbolize what my Heavenly Father has done for me during these last several months. Panic has become a familiar feeling for me. There is no better word to describe how I have felt on so many occasions with Annie. My heart has ached and raced and been filled with dread and fear for her. At times, I have been almost overcome with panic, but each time this happens, I feel like Heavenly Father reaches down from heaven and holds my heart in His hands until I am able to feel peace again. When the feeling of panic returns, I don't sense the disappointment that you might expect from a Father who has told His child again and again that all would be well if they would just trust Him. He just reaches down and holds my heart. Tonight my heart is in His hands and I am at peace. A remarkable gift.