They did an echo on Alexandra today and made the decision to pull her chest tube this afternoon, as it was not doing much of anything being positioned as high as it was. The pleural effusions are much better, which was good news. However, the fluid in the pericardial sac around the heart is worse. Now we are in a wait and see mode to see if the fluid goes away on its own through the use of the diuretics, or if it gets worse, they will need to drain the fluid directly from the pericardial sac. My husband likened the news to being able to ride the Rebel Yell (roller coaster at Kings Dominion in Richmond, Virginia) over and over again. It’s not always easy, but it does help to try to keep your sense of humor during experiences like ours. You learn pretty quickly that there is not really much you can control in the situation, and the best you can do is try to laugh a little.
Although she was awake at least once every hour last night, Alexandra was in a relatively good mood all day today. She ate both breakfast and lunch in the playroon, a privilege reserved just for patients. She also enjoyed playing with the dollhouses there as well as participated in music group. She likes attending music group on her own and was very annoyed when she turned around at one point and saw that I was still there!
She seemed much happier without the chest tube and drainage box weighing her down when she walked around tonight. We made a few laps around the hallways and went into the playroom for a while longer. The nicest part was being able to snuggle together on the sofa in her room without worrying about where the chest tube was and whether or not we were going to knock over the drainage box.
I’m anxious to see how she sleeps tonight, as I’m sure she was waking up a lot because she kept rolling over onto her left side where the chest tube was inserted. That had to be at the very least uncomfortable if not downright painful! I’m looking forward to the day we can be home and all get a decent night’s sleep in our own beds!