May 31, 2009 – Over Alexandra’s first two surgeries, we always came across people whose children had set-backs, and we always felt sorry for them. Well, today we were those people. Alexandra seemed to be doing fine last night until around 1:30 a.m., and then she became very agitated, screaming and crying, and just couldn’t get comfortable. She alternately wanted to be held and then not touched. Her nurse checked some vital signs, and we both become concerned enough to call in the doctors.
After hours of poking and proding, chest x-rays and echocardiograms, I was told that she had a significant amount of fluid around both lungs (pleural effusions) and some around the heart. They said that she would need to have an IV put back in and moved back to the CICU. Further, they felt fairly confident that she would need to have a chest tube inserted to drain the fluid.
I have to admit, I broke down a bit and had to walk away to get myself together again. It was something I repeated several times throughout what was a very emotionally and physically draining day. While we were told from the beginning that pleural effusions were a very common complication from this surgery, she seemed to be doing so well last night that I thought she was avoiding it. Also, in her previous two surgeries, she never took a step backward.
From around 1:30 a.m. until late this afternoon, she was absolutely miserable, as they didn’t want to give her anything for pain, thinking they may decide to insert the chest tubes. Also, they switched back and forth from letting her have fluids to not having fluids for the same reason. It was so hard to watch her in obvious distress and not being able to comfort her even with water when she asked. Finally, they determined that they would give it a day on the increased IV diuretics, so she has been able to have pain medication and drink fluids since then. Between the increased medicine and some oxygen, she has been resting somewhat comfortably the rest of the evening, and we are hopeful to have a relatively peaceful night since I’ve basically been up since right before 1:30 a.m., and it’s going on 10:30 p.m.
I had one very scary moment this afternoon when she laid in my arms and became about as lifeless feeling as I want to feel her ever again! She turned as white as could be, melted into my arms and would not respond. We got her back on her bed, and, while the nurse tried not to show she was concerned, she started loudly calling Alexandra’s name, trying to get her to sit up and pulling up her eyelids to check her pupils. After a minute (it felt like five, but I’m sure it was actually less than a minute), she screamed at us to “Stop it!” Then, I knew she was okay. Our feisty little one was back!