I am taking my Tetralogy of Fallot posts about Ruby from my family blog and posting them here in hopes that others with the diagnosis of Tetralogy of Fallot can follow our story if they desire. This way I’ll also have one spot for our updates to share on her heart as well. This one was originally posted on June 13, 2013.
I’m going to just post my emails to family after our appointments, since it sums up everything we learned at the appointments and is easier that way:).
“Hey everyone. We met with the cardiologist (I’m up feeding Ruby so that’s why this is sent so early) today and I just wanted to pass along what we were told. There was a LOT of information, she first took some tests and then we met with him for an hour. She had an x-ray and an electrocardiogram. Her oxygen levels were 100%, yay! Again, what she has is called Tetralogy of Fallot. Surgery will probably be between 4 and 6 months. They want her to be as big as possible–they said around 20 lbs! Which is really big, especially since she is only in the 12% for her weight right now (65% for height though). That’d be above the 95% at 4 months AND 6 months for weight. Crazy. They said they can get pretty pushy about supplementing. She will have weekly weight checks and weekly saturation checks to make sure her oxygen levels are normal, just done here with her pediatrician. If she starts to have what are called tet spells then things can change. That means she starts turning blue, especially her lips, meaning her heart it no longer able to pump oxygen through her whole body effectively. If her oxygen levels go down they would need to do the surgery sooner. If she has a tet spell we were told to calm her down, then if that doesn’t help to push her knees into her chest, forcing the blood to flow through her heart. If that doesn’t help we are to call 911.
“They will do another echocardiogram in a month, along with a blood test to see if she has a couple other things that could go along in addition to Tetralogy of Fallot. The cardiologist drew a picture of her heart and there are 6 things wrong with hers. He said that most of it was cause an effect–there was a main hole in the middle which caused this to mis-align, and this to narrow and this to thicken, etc. etc. The echocardiogram in a month will be showing a few more things they didn’t check on the first one while at IMC. Mainly where some main arteries are so they don’t cut them during surgery and to check how some valves are doing. If things look ok we’ll continue to wait. Also next month they will start her on some beta blocker medicine (I forgot that part when I spoke with you mom). The first surgery they fix some things (hard to explain), but one of the things they have to do is with the pulmonary valve, cut into it to allow blood flow, but it then creates a problem that they will likely fix around age 2 (sooner if needed). They will put in an artificial valve. He said what they do in the first surgery is a two-edged sword, saying they have to do it to fix things but then they have to later go in and fix that. He said the average Tetralogy of Fallot patient has 3 surgeries in their life. The 3rd surgery would be when she is an adolescent to replace the valve put in at the 2nd surgery because it would no longer be big enough. He said hopefully by then they will be advanced enough in the procedure that they can go through a vein in the leg to do this. I’m sure I am forgetting some things. But there’s a long update for you! Love you all and thank you for your prayers. I was thinking the other day that we were doing pretty well–and then it hit me that it was because we have a lot of people praying for us. Love, Christie”