It's been a while since I've been here ... typing words for a new blog post. I have to admit, I enjoyed the time away. Life has been good {for the most part}. Last October, 2011, Alexa had a cardiology appointment and I got lazy to update, which I regret because I rely on this blog to reference medical events/notes. Last October, for the first time, Alexa was more difficult to keep calm during her echo, she was still for a while but then kept saying she was done. The ultrasound tech was getting upset, so was Alexa and in turn so was I. We cut the echo short. We got the most important info and good news. She continued stable with low pressure through her pulmonary conduit at 28.
Fast forward 6 months to yesterday, Monday, April 30th 2012. After our last not so easy echo, I decided to schedule Alexa's appointment to coincide with her afternoon nap instead of a morning appointment. We took the movie Tangled and her favorite guilty pleasure which are Fruit Snacks. She sucks each one by one until it slowly dissolves in her mouth. Thankfully, this means that one snack pack lasts quite a while. My plan worked and she was calm through out the hour long echo. We went back to the room and waited for results and to check her pacemaker and do an EKG. Dr. Papez said he thought it was the first time Alexa smiled at him, although she is not shy, she had been pretty shy at his visits before. He told me she looked great! She is a little over 39 inches tall and weighs about 35.5 pounds. He said everything on the echo looked good! Everything is pretty much the same as before which is awesome news!
We are aware she has some mild pulmonary stenosis in the middle of the conduit. He said, they will eventually need to balloon it and that it is in a good location for it to work. We went over the history of her pressure gradient through the conduit (lower is better):
October 2010 ~ 31
April 2011 ~ 21
October 2011 ~ 28
April 2012 ~ 31
So he said, things have remained stable and he does not foresee the pressure rising quickly. I think when they they may want to balloon is if/when it gets above 50ish. What has been your experience with this?
One of the questions on my list this time around, was 'How are Alexa's coronary arteries?' He was a little taken aback by my question as they have never before been brought up as a concern. He wanted to know where this sudden left field question was coming from. I explained to him I read this article/scenario about a young girl named Abby requiring a heart transplant after pulmonary valve replacement surgery. The mom mentioned that the transanular patch used to repair her TOF/Pulmonary Stenosis pushed her heart into an unsusal position, plus with natural scarring that occurred, this push and pull action occluded some of her coronary arteries, thus causing her heart to become weak and requiring a heart transplant. I asked how or if this relates to Alexa in anyway since she also has a pulmonary conduit, but he mentioned that this girl, may have already had issues with her coronary arteries to begin with, which I told him, yes, this was true, her mom mentioned quite a few issues with them being malformed. So he said that already complicated a complicated matter, as with TOF usually the repair requires to pass through some of these arteries. He said Alexa has no issues with coronary arteries. He mentioned with patients with only Transposition of the Great Arteries (TGA) the coronaries have to be switched around too. But since Alexa had the Rastelli hers were left alone. He said he cannot see any reason why she should have a problem with this in the future. Big sigh of relief! And thanks to Abby's mom for bringing awareness to this issue. Best wishes to Abby during her recovery post transplant.
I also, asked him about another scenarios a few moms mentioned in our Rastelli group regarding sudden pacemaker problems causing life threatening issues. He said that those are also highly unlikely and that the most important thing is that you protect the lead from the pacemaker to the heart. Making sure the child does not injure themselves in the abdomen or near the chest. For example no monkey bars, etc. When he lowered/turned off Alexa's pacemaker, she did complain and said her heart hurt. He said that since her underlying heart beat is very slow at 48 beats per minute but let me tell you that is A LOT MORE FANTAUBLOUS than nothing (yes, I'm doing a happy dance because for a while she had no heart beat of her own) she would feel sick and very lethargic and complain of pain in her upper chest almost in her throat. If this happened she would need to get to the hospital quickly to replace/repair the lead. So other than all my scary scenario questions, thankfully Alexa's pacemaker is working well and she has 4 years left of battery life!
On an another exciting note, we will be taking the kids to Disneyland soon. Alexa has been asking to go to 'Mickey's Mouses house' for quite a while now. Doc said she can ride all kiddie rides with no problem. Looking forward to an wonderful time at the happiest place on earth! Especially after all our happy heart news! Thank you God.
