The "F" Word

Sorry I'm making this post so late in the day. Anna Grace had a 1:00 appointment today so by the time we got home it was pretty much time for dinner and bedtime routine. The kids are both in bed now and hopefully sleeping :)

Let me start by saying thank you for praying for Anna Grace. She cooperated with Dr. R today and really did as well as I have ever seen her do at the doctor. We did of course give her Benadryl before her appointment which does tend to calm her, but lets face it, Benadryl is NOT valium so I don't attribute her cooperative spirit today to Benadryl. I honestly feel that the Lord had His hand on her today calming her and giving her courage. I thank you all for praying for her and asking the Lord to help her today. It is always amazing for me to see how my little girl who is SO SCARED at the doctor can do so well on cardiology days when she is being covered by prayer. So... thank you for your faithfulness and thank you Lord for helping today!

As for the appointment. Her echo showed good heart function with minimal mitral valve regurgitation. Her O2 sats were low and her blood pressure was high (ugh). Dr. R wants us to come back in 3 weeks to re-check her sats. She has had a cold so he said that the low sats could be attributed to that, but he wants to be sure it is in fact from the cold and that her sats are not trending downward. So, 3 weeks we re-check and then the number we get will give him a better idea. The best O2 sat today we got was 79. She usually runs about 82. Her blood pressure was high, but not high enough to want to start her on any type of medication. Mostly Dr. R attributed that to her being scared. We aren't usually able to even get a blood pressure on her so we really don't know if that is normal for her or not. Like I said before, she was cooperating today so we were able to get everything on her except an EKG. Her weight today at Dr. R's was 29.6 pounds. That of course lead us to the "F" word which I knew it would.

The "F" word stands for Fontan which is the third starge open heart surgery that Hypoplastic children like Anna Grace need to have. It is spoken in wispers and hushed tones and although we know it is coming we don't like to talk about it overly much and thinking about it usually causes some level of anxiety. None the less, it was time for "THE" talk. As I have mentioned before, Dr. R and his team like to do pre-fontan caths at 30 pounds with Fontans being performed around 33 pounds. So, as things stand right now Dr. R is thinking a Spring pre-fontan heart cath with a summer fontan surgery. Nothing is being scheduled right now until we do her sat re-check in 3 weeks. That will tell him if she is trending downward and if so it would most likely speed up the scheduling of the whole process. So, after the sat check Dr. R will call Anna Grace's surgeon in Charleston to discuss her case and they will recommend the best times for surgery for her based on her past history and their experience.

My mind of course goes racing, but my husband gently reminded me that we need to focus on today. So, my focus for today is that it was a great appointment. Truly it was. Anna Grace behaved well and her echo showed good heart function. Both of those things were terrific and I am thankful. I know we are going on January 10 back to cardiology for a sat re-check and then we'll go from there.

It seems that as a heart Mom you really do have to focus on this "The Lord himself goes before you and will be with you, he will never leave you nor forsake you. Do not be afraid, do not be discouraged." Deuteronomy 31:8. So tonight I will rest in that.