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.

About Me (Tag Your It)

Thank you Robin :)

Here are a few of my favorite things in this blog hop.....

Food: Spaghetti and the more veggies it had the better.
Color: Lime Green (It's my signature color.)
Animal: Elephants, but of course I love turtles (for Eli), frogs (for Dakota) and Ladybugs (for Faith)
Dessert: Cheesecake and I never get to eat it because no one in my house will eat it. I do not need to weigh 500 pounds.
Artist: I have several friends who I would call artists. They take amazing pictures, create amazing crafts, and can decorate anything to look beautiful from a pile of garbage.
Pair of shoes: Definitely sandles. But I do love high heels if I'm not with my kids.
Outfit: When my kids are not with me - a skirt, heals, and a nice blouse. When my kids are with me. It must be comfy, roomy, and allow me to leap tall buildings in a single bound.
Skinny Jeans: Surprisingly yes. I never thought I would but they fit great and are comfy.
Brand: I'm actually not brand loyal. As long as it's cute, comfy, and cheap a good price we are good.
Perfume: Imari Seduction by Avon. I must wear perfume every day or I don't feel completely put together.
Accessory: Chunky necklaces. I love them. I just wish I owned more.
City: Maui, Hawaii. It's where hubby and I got married. It has a very special meaning to me. I hope someday we can go back.
Hobby: I actually have just started gardening. I do love it, but I hate the rain and cold so unfortunately I haven't gotten to go outside and play in a while. I also have a couple of internet sites I visit often. Oh and watching movies. I just wish I could watch them while the children were awake.
Beauty Product: That would definitely be eyebrow pencil (since I have no eyebrows practically) and lip stick or lip gloss.
Holiday: Christmas, but I specifically like Christmas Eve. We don't have a real meal. We snack all night, open a present (a family game to play) and watch movies. An awesome day to spend just being together as a family.
Snack:Do I really just have to pick one? LOL I love all sorts of snacks. Popcorn, chips and dip, veggies, and I really could go on and on and on and on..............(you get the point)
Movie: Well my favorite movie changes all the time, but right now it's "P.S. I Love You" and "Letter's To God". If you watch "Letter's To God" you MUST watch it with a box of kleenix. Here's a trailer just to show you.



Song: I have a lot. Christian music is healing for me. Yes I'm usually bawling while singing my heart out, but God uses it to speak to me. So I love Healing Begins by Tenth Avenue North, Glorious Day by Casting Crowns, Come Thou Fount by Chris Rice, I Will Follow by Chris Tomlin (I just love hearing Eli sing this), and Lead Me by Sanctus Real just to name a few.
Guilty Pleasure: Ice cream (usually anything with peanut butter), the imitation Samoa's (the girl scout cookie) by Keebler (I don't actually know what they are called), and shopping where I actually can spend money on myself. Yes I'm a clothes horse.

So tag your it:

Jenn
Danielle
Sherry
Katrina
Lyndie