Another Event Monitor

I wasn't going to actually post anything on my actual blog (I did on caringbridge), but something is just eating at me to just post it. Eli is getting another event monitor to record his heart activity at the push of a button at home, when he has the "episodes" we have been seeing. We fear he may be having arrythmia problems, but we can't say for sure since they need to catch them. He's at high risk for them with his heart defects. I'm just afraid we won't see them so I keep saying what's the point. However, on Facebook some wonderful parents of other heart kiddos and adult congenital heart defect survivors have encouraged me to request one. So I did. At first the nurse said they would probably just wait until his appointment on Monday. Afterall it is just six days away. However, shortly after I got off the phone with her, she phoned back saying they were going to send one out and we would talk more about what we are seeing on Monday. So anyway, if you could send some prayers our way we all would GREATLY appreciate it. (And that is an understatement.)

How Are You?

That is a really loaded question and one I get often. Sometimes I'm not sure if people ask because they really care or are being polite. I have my friends that ask and truly care, both because they want to know and they want to know specifically how to pray. I know the people who are asking to be polite are trying to make conversation and don't realize what they are getting into by asking that simple question. I don't blame them. I think we all do it or have done it not realizing someone is going through difficult times. But if you were to ask me that question right now I will tell you I'm NOT good. Fear has taken over and taken me to a place where I cannot function. I don't want to do anything. I don't want to go anywhere. And I don't really want to be social. I can feel myself becoming more and more isolated. People want to know what is going on and it's hard to explain sometimes. Eli has what I call "episodes". They are periods where he gets a LOT of symptoms in a short amount of time. They come on very quickly, without any warning and can last for a day (meaning 7-8 hours) or less than one hour. He typically has 1-3 "episodes" every week. We know what causes 95% of them. We never know if the next episode is going to end or end by taking his life.

I was talking to my husband about when Eli was a baby. Before we knew about his heart problem. Before they did the chest x-ray and realized what the symptoms I was describing were from. Before the doctors actually saw the symptoms come on. Then you could feel the panic of everyone around us. We weren't alone. The doctors had joined us. But we are now wondering when will they join us in having the same panic now? I don't blame the doctors. When Eli was a baby they hooked him up to the heart monitor and the pulse oximeter but it showed normal. He still had a heart problem, but the tests didn't show anything. This is VERY typical Eli. It takes specific probing before you find the answer. Usually it's a doozy of an answer. I honestly feel sorry for the doctors because attempting to find the answers is very tricky because Eli from a medical standpoint is VERY confusing and difficult to figure out. It's not just take him to the doctors and have them look here and do this test or that. So as I sit and wait for whatever is next I am slowly
quickly loosing my mind, patience, temper at pretty much any given opportunity. And strangers are just as much a target. I know that is bad. It's not showing Jesus' love. I am weak. I'm trying to lean on Jesus' and I'm failing once again. Thankfully HE loves me inspite of my weakness and failures.

Usually when someone asks this question I want to tell them the whole story. And I'm an open book so I let go. I sense sometimes the person who asked the original question is sorry they did. I can't say I blame them. Right now I'm trying to avoid the question because I'm NOT good. I cry a lot. Sometimes all day. All I can think is God's going to take my baby. I will NOT be okay. Eli would be healed and safe in Jesus' arms. I would be angry, heartbroken, bitter and I would not have Eli.

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

Glorious Day

Back To Neurology

After talking with Eli's cardiologist about his blue neck, he ordered an ultrasound of the vessels. We had that at the end of the same week his cardiology appointment was. They were trying to coordinate an appointment we had already scheduled for that same day. I thought great why drive down there twice right? The first appointment time they tried to give me was only 30 minutes before and I thought there is no way. You need to leave time for it taking longer than expected, time to walk from point A to point B, check in time, etc. So then they gave me 1 1/2 hours before the other appointment and I thought surely that should be enough time. Well what was suppose to take 40-50 minutes took over 2 hours. And the location of the ultrasound they were doing typically are only performed 5 times a year total, if that. So the ultrasound tech they gave me had never actually performed the test. So another tech ended up coming in and taking over. Totally not the other techs fault. The last image she went to capture showed something VERY wrong. The picture she was trying to get, she had to place the wand on the back of Eli's neck. The vessels are suppose to be the same color. Eli's were NOT. One was CLEARLY blue and one was CLEARLY red. This means one of the vessels is carrying the blood the wrong way. So there were other images she was trying to get to give us an answer but it wasn't presenting itself for her. We went to the other appointment and I was fine. But as always the longer I have to think the more panic, reality, and not good thoughts set in. So I called the cardiologist to let him know how things went and that if he could he should look at the results. He called back and we talked. He gave me some explainations that totally made sense (you have to know Eli's not so normal anatomy to understand), but also said he wanted to talk to Neurology. Of course this was at 5pm on a Friday and Neurology was gone. And of course it takes time for doctors to talk, email, etc. because of how busy they are. I've been fairly successful at not worrying thinking about the test and what it means. That is until yesterday. The cardiologist and the head of the neurology department concluded that Eli needs to be seen at the very least for a consult. They can't rule out some of his symptoms as being caused by this wrong way blood flow.

Now of course I know nothing about how the brain or blood flow works. Talk about the heart and well I completely understand that. The more time my husband and I have to think and contemplate this information or the lack of information the more we don't really understand how it can be good that the blood is flowing the wrong direction. Of course with all this information (or the lack thereof) you have to take into account Eli's abnormal anatomy.

So there you have it. Back to neurology we go.

Happiness Is.......

Watching my little "superman" "fly" up the driveway after he gets off the bus. (Notice his arms out in back of him?)



A musical performance. (Make sure your sound is turned up. He really gets going on the chorus.)



The first signs of spring.