Day 2

We had a long night in the PICU last night. Anabelle didn't want to nurse for long so she woke up more than usual throughout the night. Therefore, she had one tired mama today. My mom came to the hospital today and hung out with Anabelle and let me sleep. I know I missed a few phone calls and texts today so if I did miss you and you want to try again tomorrow, please do.

Ellie had two SVT episodes in the middle of the night last night. They let the episodes go for 20 minutes with the hope that she'll come out of it. When she doesn't they administer the Adenosine and she usually comes out pretty quickly. Our hope with the medicine that she's on is that it will maintain control over the SVT and they will be less frequent and easier for her to come out of.

Her cardiologist, Dr. Papez, came by again today and answered a bunch of my questions. He's been wonderful and is really reassuring. Here are some of my questions and his answers:

1. Why does she continue to have the SVT episodes?
We are still looking for the right drug or drug combination to get them and the WPW under control. Plus, the WPW is more robust than we originally thought so we're having to try stronger and stronger medicines to keep it under control. Once we do find the right medicine we hope that the SVT will occur far less often. He also mentioned that he had a kiddo in PICU a few weeks ago that also had SVT and it took them two weeks to find the right combination.

2. How long will we be in the hospital?
Once new medication (or increased doses) begin they require that we stay in the hospital for three days for monitoring. Best case scenario is that her current dose of Flecainide is exactly what she needs, she doesn't have any more SVT and we can be discharged this Wednesday. If she continues to have episodes he will change the dosage of Flecainide and the three day time table starts over.

3. Why do we have to stay 3 days with new medicine?
The medicine that we are trying is more powerful and therefore has a risk of side effects. The side effects of Flecainide are arrhythmias that would be worse than what she currently has. However, they typically appear within the first three days of receiving the medicine so they want to monitor her closely to watch for those possible new arrhythmias.

4. Why can't we just do the surgical procedure that would remove the WPW?
Her heart is really small and the WPW is on the left side. This means that they would have to go through the right side and the chamber wall to get to it. The catheter that they use isn't much smaller than her valve and therefore makes it really risky. Dr. Papez said that we still have a LOT of options between where we are now and needing to do surgery and that surgery is typically the last option before needing a heart transplant.

Keep your fingers crossed for a restful and quiet night!