First off, I have to say thank you all for your prayers for Rebekah's appointment this morning. She did fantastic! I was a bit concerned because I wasn't sure how long the appointment would take this morning, but Rebekah was as good as she possibly could have been!
To start with, Dr. L scheduled Rebekah for an echocardiogram. We are so grateful that everything with Rebekah's heart looks great. Her pulmonary hypertension remains stable (about where it was after surgery), her heart function looks good, and she is not retaining any fluid.
Based on my description of Rebekah's symptoms, Dr. L thinks she is having bronchial spasms caused by micro-aspiration secondary to her vocal cord paralysis. Do you want the English version now? Dr. L thinks that despite thickening Rebekah's liquids, that she is aspirating very, very small amounts of liquid which is irritating her airways. The irritation is causing the coughing and choking and breathing abnormalities. Since Dr. L didn't see anything cardiac related, he referred us upstairs to pulmonology.
Unfortunately, Rebekah's pulmonologist was not in the office today, but one of the other partners was able to work Rebekah in immediately. He completely agreed with Dr. L's theory, so he made a couple of recommendations. First, he wants us to restrict as much liquid as possible from Rebekah's diet. That's not going to be fun at all! Second, he wants Rebekah to have another swallow study done here in Greenville. Two weeks ago when we discussed another swallow study with Rebekah's pediatrician, she wasn't choking nearly as much as she is now. It seems like we are going rapidly in the wrong direction. So he wants to get another look at Rebekah's swallowing and see what (if anything) has changed in the last few weeks. The nurse was hopeful that we could get it scheduled for next week. Finally, we left the office with prescriptions and samples for two inhaled medications. This is our first experience with inhalers. In the past when Rebekah has needed inhaled medications we have always used the nebulizer. The inhalers are much faster than nebulizer treatments, so I'm hoping that Rebekah gets used to them pretty quickly. She has what is called a spacer that holds the medication until she breathes it in. It's a pretty ingenious little device. I'll hopefully get a picture of it and how it works with Rebekah in a couple of days after she has had a little time to adjust to it. She wasn't exactly thrilled with it tonight. :)
Hopefully Rebekah will only need to use the inhalers for a few weeks until we can get the irritation in her airways calmed down. She is taking Flovent in the morning and evening, and Xopenex as needed for uncontrollable coughing. We gave Rebekah the first dose of Flovent after dinner, and she has so far been sleeping fairly well. She has only woken up coughing twice, which is a definite improvement from last night. We'll see how the rest of the evening progresses.
I just had to show you this hilarious picture. Rebekah held her foot out to Aaron and said "thiss," which means "kiss." So Aaron very sweetly knelt down and kissed her foot. It was very cute! And, you can't see it in the picture, but Rebekah is rubbing Aaron's hair on the other side of his head. :)
I just cannot describe to all of you how much the boys love their sister. She is absolutely the light of our family, for sure! We are so blessed to have been given such a special little girl. Thank you all for praying for her, and please continue to pray that we find some definite reasons for the cough and choking Rebekah has.
Nancy
