When Alistair was little, we listened to what we wanted for music. Neither of us liked kiddie music nor wanted to subject ourselves to it. Selfish, probably, but if Alistair was soothed by our music then there wasn't a problem! As he got older, he really started to pay attention to the music and he had his favorites: Jack Johnson (or Yak Yak as he called him) "Flake," Band of Horses "The Funeral," Modest Mouse "Float On," Smashing Pumpkins and anything by AC/DC. He was also fascinated by the names of bands and started coming up with his own band names. Fried Necklace was his band that he came up with and talked at length about their music, their concerts, their CD's, etc. So it only seemed fitting to use that as a way to talk about Alistair. To this day Alistair is still a big fan of music and really grooves to just about anything. He is particularly into Ok Go, Sleigh Bells and Matt & Kim right now, but those first songs and artists are still embedded in a special place in his heart!
Speaking of his heart (smooth transition, I know!), this is the true subject of this blog. Without going into too much history, Alistair was born with Ebstein's Anomaly. This is a congenital heart defect where his tricuspid valve is malformed and doesn't close all the way thus causing leakage and backwash of the blood. This causes his right ventricle to be enlarged and his heart to pump harder to push all the unoxygenated blood forward. He also has an atrial septal defect (hole in his heart) which was left open to help elevate some of the pressure caused by the leakage. Alistair was diagnosed with this in utero and upon birth, we had an action plan in place; he would be transferred to to Children's and we would go from there. 38 days later he got to come home with a maintenance approach, no surgery needed at this time.
What does this all mean for Alistair now? Well his defect has always been categorized as middle of the road on a scale of mild to severe. He has been monitored by Dr. Mark Lewin at Seattle Children's since BEFORE he was born. Kids with this defect experience short stamina and can't keep up as long. They have to rest a lot more to catch their breath and no amount of training and exercise will change that. As Alistair has grown, he has wanted to be more and more active, playing sports, riding bikes, going hiking. But with all of these things, he tires easily and gets discouraged. More and more we have to goad him into doing things that most kids don't need to be goaded into: riding bikes, running around at the park, just being active, etc. He would rather sit and read or play video games, something that doesn't require effort. It's not that he is lazy, he just gets tired and it's harder for him than for other kids to do stuff and it doesn't get easier no matter what he does. If he truly didn't like playing sports and being active, we probably wouldn't be dealing with this yet. But between that and the fact that Alistair can't really be competitive in sports, we started conversations with Dr. Lewin about our concerns. He decided Alistair was old enough to do a stress test to see how he performs. Then it was also noticed that there was a slight change in Alistair's echo...and a change is never good as this doesn't get better on it's own. So between him failing the stress test, the change in his echo and the overall observation of Alistair's inability to lead an active childhood, Dr. Lewin decided it is time to do something.
Until recently, the thought for a fix for Ebstein's Anomaly was a valve replacement...donor, animal, synthetic or mechanical. All options would require replacement at some point due to growth or breakdown of tissue and there is also the threat of rejection. There is a now a procedure called the CONE procedure which uses the patient's own valve. They reconstruct the valve to work the way it is supposed to function. This is optimal as it is the patient's own tissue which will continue to grow with him and there will be no fear of rejection. Here is a link to a couple of videos produced by a cardiac surgeon at the Mayo Clinic who specializes in Ebstein's repair if you are interested in more detailed information.
Right now we are in a holding pattern. Dr. Lewin has sent Alistair's images and records to the Mayo Clinic for review and we should be hearing back by mid-May. Assuming they concur with Dr. Lewin's assessment, we will be moving forward with scheduling surgery at the Mayo Clinic in Rochester, MN. We are hoping to get this all completed by the end of summer so Alistair can begin 4th grade with all of this behind him, so to speak. The entire process, assuming there are no complications, would be 8 weeks. 1 week inpatient, 1 week in the vicinity for clinic visits with the surgeon and then once released back to Dr. Lewin, 6 more weeks of recovery at home. Then he is good as new and ready to grab life by the reins and jump on!
