After our nurse didn't answer, I called a friend of ours, that was one of our PICU nurses, who lives nearby. She instructed us to go to the ER. I told her that she had been sleepy on Wednesday and Thursday from the RSV shot. It turns out, the RSV shot doesn't have those kind of side effects. It was her heart.
The doctor and nurses checked her immediately and her saturation was back up to 82, exactly where it should be for Tehilla. They monitored her for a few hours with little change. During that time I repeatedly asked for them to please notify the cardiologists that we were there.
The attending doctor and the ER doctor came to do rounds. I overheard them discussing the baby in the bed next to us who was extremely sick with RSV. When they got to us, they said that since she looked good and her saturation was still fine they were going to discharge us. This is the conversation that ensued:
Me: You're discharging us? A cardiologist didn't even check her yet.
Doctors: She's doing fine, her saturation is fine. We're going to send you home.
Me: No. A cardiologist has to look her over. Any time a child with HLHS comes into the ER, with low saturation, a cardiologist should examine her.
Doctors: We feel that she is okay.
Me: This isn't a heart murmur. This is HLHS. A cardiologist has to be notified.
Doctors: They're not going to do an echocardiogram. She is doing fine now, there isn't anything more to be done. She needs to be out of here. The baby next to you has RSV.
Me: Yes, I heard that. Then move us further away from them.
Doctors: You can only catch it from touching one another. But it's better if we send you home.
Me: Look I'm not trying to be obnoxious, but you're not cardiologists. My daughter has HLHS. A cardiologist needs to be consulted.
Doctors: There is no cardiologist in the hospital right now. The best we can do is call and speak to him. But if he says that she's fine, then we will discharge her, okay?
Me: Fine. If the cardiologist says we should be discharged, then that's fine.
(Tehilla may be a heart warrior-princess, but I am becoming an advocacy queen.)
They called a cardiologist. He ordered an EKG, and asked that she remain an additional hour for observation. If everything checked out okay, then we could be discharged, unless I felt that he should see her. He would be coming in later in the evening and we could wait, but he didn't think that was necessary. I told them that if everything checked out okay, then we should be discharged. No use sticking around all the germs in the ER.
The ER doctor came to notify me that her EKG was clean. I apologized for being so pushy and she said, "No, you are doing the right thing. Even though everything is okay, you did the right thing coming in."
She asked the cardiologist about Tehilla being sleepy and he said it could be a side effect of the RSV shot. Either way we need to discuss it with our cardiologist before the next RSV shot.
This whole episode was hard on me, in that it reiterated that no matter how much knowledge and instinct I've gathered from being a mother to my two other kids, it's all useless when it comes to Tehilla. Nothing is the same and everything is a possible danger. I spent the day beating myself up for nearly missing a sign of heart failure. Thank G-d, she is okay and we are back home now.