We just got back from Elijah's cardiology check-up. It had been six months since he had seen Dr. Gremmels. That's a record!
Elijah was a very brave boy. He was scared, but a little bit less scared than he normally is. We usually are not able to distract him at all (through all the tears), but this time distraction worked. He became preoccupied with a model of a human heart. For some reason he thought it was a coo-coo clock, so he kept opening and closing the "door" to the right ventricle and saying "poo-poo clock!" He also sat all by himself for the 20-minute echo for the first time ever and didn't fuss once!
He weighed 28 lb. 6 oz., he was 34 inches tall (growth, yay!), his oxygen saturations were at 100% and his blood pressure was 105/86.
His heart function is great and his valve is leaking slightly more than it was at the echo six months ago (which was then classified as "mild"). It's hard to see what is going on with his distal arteries through the ultrasound because the arteries are so small, so we'll have to wait till the next heart cath on that.
Dr. Gremmels (who Elijah calls "Doctor Guess") wants Elijah to come in for a heart cath in the next two months. From there we will have a better idea about how well his arteries are (or aren't) growing, and we will have a better idea about when his next open heart surgery will be.
It sounds like surgery could be anywhere between six months and two years from now. The two main things that will determine the timing of it are: 1. how quickly he outgrows that pulmonary valve, and 2. what the cath reveals about the bloodflow in his arteries (mainly the right pulmonary artery).
Dr. G said YES about getting the H1N1 vaccination. Apparently the majority of the children in the ICU who are sick with H1N1 right now are non-cardiac kids. Typically, families that have children with no underlying medical conditions are not being as cautious, so BE CAUTIOUS.
I know the media has blown H1N1 into distorted proportions, but it is just as serious as the seasonal flu and many children die from that every year. ALL children under the age of 5 are at high risk for serious complications from H1N1, so talk to your pediatrician and make the decision that is right for your family. And do lots and lots of hand washing!