Good News!

I think the pediatric cardiologist here is wonderful. We were on pins and needles waiting for him to call yesterday afternoon. After seeing the things pop up on the EKGs for the three kids, I wanted Mike to be the one to talk to him. Not only, did I feel like I wasn't emotionally stable to hear the doctor's conclusions, but also, Mike understands most of the doctor's technical talk! Mike called his office and asked his secretary to have the doctor call him after he had read the EKGs. I was surprised when the home phone rang shortly after 3pm and it was the doctor. I was extremely nervous! He told me he had tried calling Mike, but couldn't get through, so he wanted to call home and talk to me and not wait.

He said if he had gotten the EKG today for Cambrie instead of the one on Monday, we would not have had any of this "excitement". He talked in technical terms - which I did not fully understand - but I did understand that today's EKG did not show the same things that Monday's EKG showed which then had indicated some kind of cardiomyopathy (and that is common in Friedreich's ataxia).

The doctor explained that Cambrie's test indicating the possible Right Ventricular Hypertrophy can just be indicating that her small ASD is still there. He was not worried about that flag on the EKG today at all. I guess that flag could have been on Monday's EKG too but there were also the other strange things present that resulted in his concern about the cardiomyopathy. He said she looks and sounds healthy based on his physical exams. He said her heart sounds good. Her coloring is good. He is pretty sure her VSD has closed and that was the one that was the big concern from the beginning. He said had we not had that strange EKG on Monday, he would have discharged us from his clinic on Wednesday.

We are still to meet with the Primary Children's doctor in May, but he had talked to her again today about all of our EKG's and she didn't seem alarmed. He thought we might be having another EKG done then for that doctor. She might recommend an echo then as well, but after today's EKG he felt she probably wouldn't and we would just do that again when she is 3 to monitor the ASD.

Both Gavin and Alyssa had a "Left Axis Deviation" show up on their EKGs. He explained it but I didn't fully understand it. I guess Alyssa's measures at a greater degree so he suggested we take her along to our appointment in May so the PC doctor can have a listen to her as well.

The doctor said he would have his staff make copies of everything and send them to us so we will have them in hand and the PC doctor won't have to try to pull them up. I was very impressed with him for thinking of this for us. I have never had a doctor offer to make copies of medical records for us - in the past, I have almost had to pull teeth to get some copies of things from other clinics!

He confirmed that my EKG was normal and that Rylan's was also normal.

I did talk to the doctor about a few of my concerns with Cambrie. When her VSD and ASD were first discovered, the pediatrician told us to just watch her and watch for signs of heart failure and for any signs of her turning blue. I told the cardiologist this and that I think knowing about her heart condition, I tend to read more into different things and worry more. I asked him about her hands and feet turning purple at times. He reassured me that although many think that is a sign of a heart problem, he said it absolutely is not and is normal. He explained things to me, but basically, he said, "she might just be the kind of person that will need two pairs of socks in the winter and an extra blanket!" He said if it were a true indication of a developing heart problem, the blue color would not go away. Since her hands and feet sometimes turn purple for a little bit but then go away, it is nothing to worry about. I feel so much better now and definitely at ease!

We feel so very grateful for yesterday's news. It is still hard to know our kids have heart issues - and they all didn't have "normal EKGs" - but it is a relief to hear they aren't critical or at least not as alarming as we thought a few days ago!

We want to thank all of our wonderful family and friends who have been thinking about us and praying for our family this week. We sure have a wonderful support network!