Saturday, November 23, 2013

Shabbat in the ER

This morning Tehilla was very pale, and extremely sleepy, to the point where she wouldn't wake from napping. We took her oxygen saturation and it was at 74. We tried to wake her some more and 20 minutes later her saturation was at 68.

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. 


  1. Hi Shoshana, even though I don't know you I feel your anxiety and wish only that the best outcome be awarded to you and your situation. I am so against any kind of "vaccinations" and have read so much negative information about how those shots affect children and their immune systems. May G-d grant you the wisdom and discernment to know what is the best treatment plan for Tehilla...that instinct inside of you is Hashem helping you through this..listen to your heart. I Love you so much and pray you find peace in the midst of all the trials and distress you are experiencing right now. Shalom shalom sweet sweet mama.

    1. That's wonderful that you're against vaccinations. You have every right to abuse your children by denying them basic medical care, and endanger public health in the process. Perhaps you should read some more about what the diseases that we're vaccinating against used to do to children like yours, say, 100 years ago, and their survival rates, and such. Of course, you could be one of those incredibly selfish individuals who feels that your children can benefit from herd immunity, which is actually intended for children like Tehilla who are on a delayed vaccination schedule, or other children who are medically incapable of being vaccinated.

      May God grant you the wisdom to see that your selfish stupidity is a danger to your children, yourself, and public health.

    2. I AGREE!!! there is so much misinformation out here and no one should be spreading their opinion (especially when it's wrong and endangering others!! )

  2. DO NOT beat yourself up for 'almost missing a sign' you are a fantastic mother and even better advocate!!! I am so impressed with your strength especially with the physicians in the ER who can be intimidating!! You are amazing and strong and very very capable! You have been so upbeat and optimistic in times when many could give up. Keep fighting hard for you and your precious girl and know that you are doing everything you possibly can and never feel an ounce of guilt because you are doing it all!!!!

  3. No, you did NOT miss a sign.

    Even now, neither you, the nurse nor the cardiologists know for sure what was causing the sleepiness, and you may never know.

    I love the title of this blog, because it says so much about the physical and spiritual heart your little girl has. Even when the physical falters it doesn't collapse instantly - remember the strength that has brought her and you so far since before she was born.

    So I say - try (I know, it goes against some of our most ingrained habits, but keep trying anyway) to salute yourself - I know I do - for CATCHING potential problematic symptoms, for doing the right thing and going in to check.

    And as scary as these episodes are, we'll have to eventually learn to appreciate the mischeviousness Tehilla's heart shares with the hearts & bodies of innumerable children who's condition improves once they are within spitting distance of a medical professional. Arrrgghhhh!

    Oh, and yeah... please take good care of yourself. You are doing a hero's work!