Trying to get a wiggly almost-10 month old to stay still for an ultrasound of her neck veins and arteries is an interesting task. Addison has recently discovered the joys of flipping over and now she feels compelled to do it constantly, even during an important medical examination. I tried to bribe her with some delicious toast strips and rice crackers, which actually worked…except her chewing made it difficult for the tech to get a good lo0k.
Thank goodness for Steve Jobs and his clever iPad. Download a few silly baby stories and games, it’s an instant entertainment unit. Of course, the attention span of a baby is measured in seconds, even with the latest high-tech touch toy right in front of her face. Eventually, we got the images we needed.
The radiologist explained to us it is completely normal for children who have been on ECMO to have damage to the jugular vein because that’s where the tubes are inserted. Sometimes the blood vessel can be repaired but often, it is simply tied off. In time, other blood vessels grow to take over the flow – called collateral circulation. As expected, that is what happened with Addison and would explain the intermittent puffy face. That should lessen with time as her body grows. But of course, she is not a ‘usual’ baby and she is proving it once again. Turns out she also has damage to the main vein that goes to her right arm, which explains the puffy arm/hand. This is not normal for an ECMO patient but it is possible when she was put on the machine the second time post-transplant, the surgeon had to go a slightly different route to get access. Whew…does that make sense?
So what is the conclusion of all this medical mumbo-jumbo? At this point, we are waiting for her cardiologist to get back to us. The radiologist did not think this required any sort of treatment right now. It is something that needs to be monitored and the expectation would be the puffy episodes decrease over time as her body creates more alternate pathways for blood flow. As far as he was concerned, he saw no reason why we can’t continue on our trip to Italy.
Waiting for the ultimate word from her cardiologist now!
Elaine, Aaron and Addison