Long QT

Most of you are probably wondering what in the world Long QT is?? I wondered the same thing a few months back when they said that a few of my kiddos had Long QT.

After Nora was born they did an ekg while we were still in the hospital. They wanted to double check on the Heart Block scare from earlier in the pregnancy. Everything came back normal. NO heart block.  Then at her first doc apt (like a few days old) they heard a murmur. No biggie. That is pretty normal. Then at the next apt, no murmur. Good, right?! Well, then at the next apt they heard it again..so Travis, who is the PA and who also had a son born a few months before Nora with a severe heart condition, felt that it would be wise for us to see cardiology. So, I figured, I would just make Maygen’s yearly at the same time. We took both girls, Nora and Maygen, and had ekg’s and Maygen had an echo. After they ran the ekg they found that M and N both had Long QT. NOW, here’s the really weird part, the cardiologist said it was no biggie and he would see us in 2 years. So, I left and never thought about it again and in fact didn’t even remember what he said they had. So, a month later I’m at a well visit and my ped asked how the ekg’s went. I told her and she read the note from cardio. She said that since 2 of my kids had this that it would be a good idea for all of them to be tested. So, not thinking this was a big deal, I just waited until Maygen had more apts at Children’s. So, in September, I take all 4 of the other kids in to have their ekg’s done. So after they ran the 4 the nurse said I need to have the 1 kid’s test read. Ok. No biggie. She then pops her head in and says, “Is there history of cardiac death in the family?’. I said no. Then I looked at Tim and was like what did she just say. So then she pops back in and says she needs to see me in the hall. I went into the hall and she said we really need to know about your family history in terms of cardiac death. I said there isn’t any. She said the guy who read the ekg says you need to see cardiology asap. I asked to speak to him. He comes out and starts talking about the ekg and how we really need to get in, RIGHT away. I’m like ok. So then I ask if I should be worried and he says, I’m not going to tell you NOT to worry and then proceeds to say I don’t think anything will happen between now and her apt but she needs to get in asap. So I leave in a complete fog. Erin then sees Cardio but with a different doc b/c our cardio doc was busy. So Dr. Russo says this is a very serious condition and 3 of your kids have it and def needs to be looked at.

We waited about 2 months and then were seen by the EP specialist. He confirmed that Maygen and Nora do have Long QT but Erin’s ekg actually looked pretty normal. We’re having genetic testing done to see which type of Long QT the girls have. Long QT is hereditary but we’ll wait to see what the genetic tests results are before having anyone else tested.  

The girls were put on beta blockers to help with the electric currents in their hearts. They have to take the medicine 3x a day. Every 8 hours. That has been a logistical nightmare but we’re working through it. 

We just had a sermon series on God With Us. I can say with absolute certainty that God was most definitely with us. He not only provided all of the right people to be in the right places at the right time but He’s been protecting their hearts since they were conceived. I also know if Nora hadn’t had a murmur and then not and then again and if Travis wasn’t so cautious b/c of his own son then we would have never been seen by cardio in the first place. I also find it amazing that it was Erin’s ekg that sent us to the EP specialist when in reality her ekg looked normal. It was again, our God guiding us in the right direction.  God is so good. He is a God of details. He is a God of love. He is a God of protection, comfort and healing. We now know and can pray and deal with it. I have some days where I panic but then I remember that fear is not from God and that the enemy continually tries to wreck havoc in my kids health and EVERY time we witness a true miracle.  We are so blessed to be able to see God moving in our kids lives again and again.