Easter Excitement

Happy Easter everyone.

Well, Harlie had a rough day on Saturday. When I got to the hospital, I met one of her cardiologists in the hallway and started discussing her status on our way to her room. As soon as we walked into her room, we could clearly see that she was BLUE and struggling. Her alarms were blaring and her sats were 67!!! No one was in her room – no one was helping her! The doc called for help and 30 to 45 minutes later, all was calm again.

Clearly, I will be talking with the appropriate people about this situation. Enough said about that. After that chaos, there was someone checking on Harlie every few minutes. I have to say that I appreciated all that her nurse said about the situation. She handled it very well and I know that she can't be in two places at the same time. She said that she had just checked on Harlie about 10 minutes before that episode. It goes to show how quickly things can change.

They think that the settings on her vent (which were turned down the night before) just made her too tired to continue at that level and the fluid build up must have pushed her over the edge. In one aspect we got lucky. Somehow they accidentally took two chest x-rays, one at 9am and one at 10:30am. There was such a difference in the amount of fluid build up between the two, that they decided to put a drainage tube in.

So, they put a central line in her leg, gave her some pain meds, and inserted the tube. This tube will stay in her chest until fluid stops draining. After just 24 hours, over 200ccs have drained (that’s almost 7 ounces)! They had her on Portagen, but that might not be working. So, tomorrow she will go on TPN (total parenteral nutrition - which is nutrition given directly into her blood). They are hoping that this will give her time to stop producing this fat and hopefully when they re-introduce the Portagen, there will be no drainage. At this time, I have no idea how long the TPN or the chest tube will stay in place.

Despite the drainage tube, her respirations are still extremely high. The doctors seem stumped by this weekend’s events. Hopefully we will get some answers soon.I hope you all had a nice Easter. Hopefully this week will be a better one for Harlie. Please continue to send her good thoughts and prayers.

Thank you and take care,
Christy