Just when I thought I could breathe again! I was so looking forward to blogging good news this week, so I will start with that. On Monday morning when I arrived, I was told that the doctors had just removed Annie's atrial lines. I was excited about this and asked the nurse how many more days she thought it would be until they removed her final two chest tubes and I could hold her again. She surprised me when she said, "You know, I think we might be able to work it out and let you hold her today." With permission from the doctors, she pinned the chest tubes securely to Annie's blanket and with the help of the respiratory therapist, very carefully placed her on a pillow on my lap. While it was a bit awkward, trying to manage all the tubes, lines and the ventilator, I was so happy! For four hours, I did not move as I did not want her placed back in her crib until they really needed her there. It felt like a huge milestone and was something I had been looking forward to for two-and-a-half very long weeks. Cameron was able to hold her Monday night as well. Tuesday was better than Monday, as this time I felt more comfortable with all the extra things that accompany her into my arms. Wednesday morning, was even better still. However, Wednesday afternoon, her condition became more complicated again.
Before Annie had surgery, I was worried about so many things: How long will she be in the hospital? Will the surgery give her relief in her breathing? Will she be able to come off of the ventilator? If she can't, then what? Will I be able to manage all of her needs at home? How long until her next surgery? What will her quality of life be? How scary will a common cold be for her? Will she still be at risk for "episodes" like the ones she had before surgery?.......on and on and on. The Monday following surgery, all of these concerns were put on the shelf. The only thing I was worried about that day, and for the entire next week, was keeping her alive. Although things began to improve last week, it wasn't until this week that I started worrying about all these details again. It occurred to me that this was a good thing as it meant that I was no longer fearing constantly for her life. As I rocked her yesterday morning, I felt grateful for how far she had come, and the progress that she was finally making. Shortly after 2:00 in the afternoon, while I was still holding her, her heart rate suddenly soared to above 230 beats per minute. The nurse very quickly removed her from my arms, placed her in her crib and called for help. The doctors immediately came to her room and again the crash cart was delivered to her door. All I could think was, "not again!" "I cannot do this again!" Thankfully she only stayed above 200 for about a minute and returned to a more stable heart rate without intervention. For more than half-an-hour, she continued to spike every 5 minutes or so, always resolving on her own. The doctors decided that maybe her picc line was too deep and was aggravating her heart. The IV team was called to pull the line back and she was also given a strong sedative to help her relax. By 3:00 she was no longer having these spikes and at 5:30, I left for home, hopeful that all was well again. Just as I was pulling into my neighborhood, Annie's nurse called to let me know that she was doing it again. I was so discouraged to hear this news. I met Cameron back at the hospital and she continued to have these spikes in her heart rate every 5 to 10 minutes until after 2 am. This morning, the doctors decided to increase one of her medications in hopes that it will resolve these issues with her heart. It will take two to three days for the increased dose to take full effect. We won't know until then if this will remedy the problem. So, again, we wait and watch and hope and pray (this is becoming the routine for Annie!). Today, she has made gradual improvements. Her heart rate is still higher than they would like it and she is still having lots of arrhythmias, but they are not as fast or as dangerous as the kind she was having all through the night. Hopefully this means that the medicine is slowly starting to work and will bring a resolution in the coming days.
Lately, when people ask me how I am feeling, I usually say "tired." I feel like I prepared myself for a sprint, but Annie's recovery is proving to be more of a marathon. I have watched so many families come and go in the CICU while we keep waiting for Annie to get better. Some days (like yesterday), it is hard not to get discouraged. But, I keep thinking about a scripture that I love. It is actually the theme scripture for the Young Men and Young Women this year. It is Joshua 1:9 and it says "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee withersoever thou goest." In January, when it was introduced as this year's theme scripture for the youth, I knew immediately that it would be my personal theme scripture this year as well. Whenever I am feeling worn out, worried, tired, discouraged or afraid, I think of this scripture and remember to "be strong and of a good courage," knowing that He is most definitely with us and will never leave us to do this alone. Of this, I am sure.