Tuesday, April 26, 2011

It Has A Name

Subclavian Steal Syndrome (SSS). That's what the wrongway blood flow through Eli's left vertebral artery is called. We 100% know he has this. And we 100% know it's causing symptoms. He gets dizzy and has headaches. Especially when he is active. The problem is it can also cause you to pass out. Well Eli passes out. However, we (meaning his pediatrician, cardiologist, my husband and I) do not know if these passing out epidsodes are because of the SSS or something completely different (they think it could be narcolepsy but that needs a COMPLETELY different post that I MIGHT someday get around to posting). The passing out from SSS typically is very short. Meaning usually they will pass out and wake up quickly. Except Eli doesn't wake up quickly. In fact he can be very difficult to wake up. The issues with the SSS? It's a very rare complication from his orginal subclavian flap repair surgery for his coarctation of the aorta. It's rare, meaning it's rare in children. And most children who have it are asymptomatic (they don't have symptoms). So for a child to have SSS and symptoms is as rare as it gets. If he was an adult and it was caused from the typical reason, which is a blocked artery from plaque build-up, they would remove the plaque from his artery and/or put a stent in the artery. But his is caused because they took out part of his artery so he doesn't have anything there to fix. Therefore they can't do the typical method to fix it. Honestly I don't know that they've ever really seen any kids at Children's Hospital with this. So they are just as confused as we are. As much as I need prayer, my son's doctors need it that much more. They need prayer for wisdom to know what to do. There are some very scary things that can happen in a child who has this and undergoes additional heart surgery. Yes brain death is one of them. Well Eli has to have more heart surgery eventually. The ONLY thing I can do is rely on God to get us through.

The question I'm getting asked a lot is "should his activity be limited". Well I spoke with one of his doctors yesterday. She put it like this. If a person had a sprained ankle or broken leg you would limit activity for a bit for the affected part to heal. If a person has asthma you limit the things that they do to prevent attacks. Since he is symptomatic, as with any other condition, we would want to prevent his symptoms from surfacing. But we also need to keep in mind he is only almost 5 years old and we can't prevent everything. We can only do our best. So this only leaves me with questions and decisions doctors can't answer or decide for me. Since I know physical activity causes his symptoms to surface and we are going to the zoo for my daughters birthday and both of my little boys birthdays, do I need a separate stroller for Eli? He's almost 5 and he doesn't have something that makes it obvious he needs a wheel chair or special stroller. So what does a parent do? On one hand you don't want to baby him and on the other hand you don't want him having symptoms. Back when my daughter was born I questioned whether we should get a sit-and-stand stroller but since I'm a cheapskate I couldn't justify the cost. I am borrowing a friends for one of our trips. But what about the future? Does it justify the cost? And of course there is a space issue with fitting it in my vehicle. I need God to drive a mini-van into my driveway with my name on it and a stroller in the back for Eli. Because short of that I have a feeling I'm not going to be able to decide.


  1. Thank you for updating about Eli, Angela. I was brought to tears as I read it. Cannot imagine what you must be going through. Know I am thinking of you and praying for you and him (AND the doctors!). And also for wisdom about the stroller. *Warm hugs*

  2. The sit'n'stand that we have is one we got through One Step Ahead and not all sit'n'stands are built the same. So if you get one make sure you try it in your car first to see if it fits. Ours is a double but you can find the single ones too.