Update

Hello everyone! It has been a VERY long time!!! I am not sure if people still check to see if I have updated information about Ella, but I thought that I would put out an update.
Ella is doing pretty well!! She no longer has a tube which was a big step. She is still not a fast gainer but there is not any excitement about it because she does have a curve on her growth chart. As of January 1, 2016 she was 23 pounds at  3 years.

I will say that 2015 was a pretty challenging year for us! At the very end of 2014, Ella, my mom, sister, niece and I loaded up for a girls trip to KC. Ella had an 8 am appointment with her cardiologist, Dr. Goertz. My thought was that  we would stay across from KU Med for the night, Ella and I would get up, hop over to the appointment, then swing back and pick up the rest of the girls and then go shopping. Her appointments typically last about an hour and a half by the time we do the echo and meet with the doctor. WELL....this plan did not work out like I had hoped. Her echo looked great. She has great heart function! But after 3 hours and 2 cardiologists later, we left with a holter monitor and a possible atrial flutter. (we did still go shopping!)

At the beginning of December, we checked in to CMH for what was to be a pacing done on her flutter. An atrial flutter is when her upper chambers (atrium) is beating twice as fast as the lower chambers (ventricle). Her lower chambers have locked in at a rhythm of 150bpm  so her upper chambers are beating around 300 bpm. Her heart would beat like this whether she was sleeping, crying, playing, or really anything. What is the most amazing is that she showed absolutely no symptoms what so ever other than a rapid heart beat. So we were going to thread a little pacer down her esophagus to her atrium, pacer really fast and then slowly bring her down to normal rhythm. Then we would start her on meds, watch her for 4 days, then go home. When they got Ella sedated, she went one to one, which is basically her lower chambers matching up to the same beat as the upper chambers. Her heart rate spiked to 300 so they had to do a cardioversion. This is when they shock the heart back into rhythm. I had originally opted out of this because it sounded so....shocking! Either way, the cardioversion worked, she was back in the room and ready to party by the end of the night. Meds were administered, we discovered she has a pretty low resting heart rate got our holter monitor and was discharged after a few days. Easy peasy.....

Fast forward to April. we show up at her appointment and boom, back into flutter. This time I opt to go straight to the cardioversion with Dr. Goertz performing it at KU Med. We show up at the hospital and surprise, she has converted out. We change her meds a bit and get discharged the next day. Now I have figured out that I can tell when she is in flutter by simply touching her chest.  And then in May, after doing her daily heart rate checks I see that she is in flutter. I monitor her for a few days, send in a few event monitors. They have me adjust her meds at home for a few days to see if she converts which she does not so off to KU Med we go. They were able to successfully convert her out (literally takes minutes and she is sedated. They use propofal so they have her asleep and awake in absolutely no time at all!) We do our normal few day hospital stay, then head home. Now we are heading into June. She is back into flutter. Our goal through all of this is to keep her out of the Cath Lab until she is bigger. With her being so tiny there are a lot of risks involved so we are trying to maintain with meds. However, we are maxed out our meds that she is on and are looking at the most intense. Dr. Goertz is REALLY wanting to hold off on the the catheterization if at all possible. Being the cautious man he is, he has now been in contact with St. Louis. They also would prefer that we wait as long as possible before going to the lab. However, we are now getting prepared to do the 4th cardioversion at KU Med. We successfully come out of flutter and have now changed to Amioderone, a pretty intense med for such a little girl. The hope is that this is going to keep her out of flutter for at least a year. It worked for about a week.
The other cardiologist, Dr. Malloy-Walton, has me take Ella to CMH ER (won't do that again. That was INTENSE!!) She has rights at CMH and is just as amazing as Dr. Goertz! She had called ahead and told them that we were coming through the ER so that we can get on the Cath Lab schedule for the next day. More of a red tape kind of thing and not an emergent kind of thing. The Dr. That was going to perform the catheritization was going out of the country and he agreed, with a lot of encouraging from Dr. Malloy-walton, to do the procedure before he leaves, hence the need to get on the schedule. Ella was quite popular in the ER mainly because she looked pretty darn good for a little girl with a racing heart beat. We had a lot of nurses and doctors stop in and play! Kind of unusual for them and they all said that they enjoyed the refreshing break! Back to Dr. malloy-Walton calling ahead. She told them to do absolutely NOTHING that would stress her out and to listen to all my information because I had a great handle on what was going on. They did a great job listening to both her and me. The next day, she went into the cath lab. They thread little catheters up her itty veins and found the source of the flutter which was scar tissue that was flipping up right on her ASD repair that was causing a conduction issue. They did about 5 little burns on the scar tissue and she was showing no signs of flutter when they tried to stimulate her back into flutter. This was AWESOME news. She did great! We even got to go home the next day, straight from the PICU with NO MEDS! The nurses were so excited to discharge us! They kept saying that they never get to do it. One nurse was so excited that she wanted to be the one to walk us to my car!
To this date, Ella is continue to be a rock star. She is off all meds! She does have a ridiculous heart rate, which has raised conversations about a pace maker in her future. At this point she continues to do well and does not need it yet. The arrhythmia's are due to her Sick Sinus Syndrome aka Sinus Node Dysfunction so we are not shocked but her rhythm. Just get to keep watching her!!

WOW that was a lot of information!! But that is where we are!! Otherwise, she is doing great!! She is happy, loves to dance and LOVES her fashion and shopping!