Peace

I have been meaning to post for a while. I'm not sure why I haven't. I guess because I have so many swirling thoughts on what I want to post, that I have a hard time sitting down and sticking to one at a time so I'll post the one that has hit me the most.

Sweet Peace!

Ever since the neurologist gave us answers as to why Eli is passing out, getting severe headaches, dizzyness, arm pain, stroke like symptoms, etc. I cannot even explain the peace in my heart. The problem is not fixed. It didn't just go away. But knowing what it is has helped us to say "slow down" so that we can limit the pain. I get very brief moments where I get scared of what is going to come next, but they are just that. Brief. I'm able to give them back to God because I am grateful he revealed the answer to us. And that gives me sweet peace.

I don't feel the overwhelming urge to google for answers. I don't feel the anxiousness everyday waiting to see if he's going to have an episode. I honestly feel like I can enjoy being with my kids again.

Sweet Peace!

Finally Answers

So anyone that has been following Eli, knows we have been searching for some answers as to some severe episodes he has had. After we initially found out Eli had congenital heart disease and up until his 2009 surgery, Eli was a fairly normal little man. He could remember things. He could focus. He had TONS of energy. February 3, 2009, changed our lives forever. At first we just noticed a weakness on the left side of his body and the left side of his face didn't move when he smiled.



(Just so you can see his smile.)


After his 2010 surgery and things didn't improve I realized it was time to get him some help for the weakness and his speech (can we say denial). After he started therapy, we noticed the weakness did improve as well as the facial palsy. He made great improvements in his energy at first. Then we noticed he would come to us while he was playing and complain he had a headache, was dizzy, and his right arm hurt. At times he would even throw up. I kept bringing my concerns up with the doctors to which I basically received absolutely NO response. Then my husband noticed his neck was blue. I don't mean veins and arteries were visible, I mean his ENTIRE neck was blue. I didn't panic and instead attempted to see if I noticed a pattern of when it would do this. It seemed only to happen after he played really hard. The harder he played the bluer his neck. After we mentioned it to his cardiologist (who also noticed his neck was dusky compared to the rest of him and he hadn't even played very much prior), he decided to do an ultrasound of his arteries and veins that connect his heart to his brain. The ultrasound showed the blood was flowing backwards through his arteries to his left arm. Not good. However, they always said it shouldn't cause the problems we were seeing. In fact, for a couple of months after we didn't even know this had a name. We later learned this was called Subclavian Steal Syndrome (SSS). But we also learned that to be "true" Subclavian Steal you had to display symptoms. We (his parents) ALWAYS connected the first headaches, dizziness and arm pain to the SSS. His doctors did not. Then he had some VERY scary episodes that honestly I should have called 911 for. And then the passing out began. They were EXTREMELY quick. So quick he would wake up before he even hit the ground. When I continued to get ignored, I switched clinics. It was honestly THE scariest thing for me. I like familiar. But with a dear friends phone call on my behalf I took the plunge and it was THE best thing I ever did. The new cardiologist still did not believe it was the SSS, but he was concerned about the passing out. So he sent us to the neurology department within his hospital network. I am so happy we went. The doctor was amazing. She never ruled anything out. She had us take vitals, get video, and gave us direction to provide the data she needed. While we were doing this Eli had a major jump in the blood pressure in his legs one day (160/78). Forty minutes later he developed one of his headaches, complete with dizziness and throwing up. For the next several weeks it just never appeared to us that he really fully recovered. We even got all the events on video. During all this he ended up having an MRI. But, I had reached my breaking point before the appointment to get results, so I went to the pediatrician's office. Our regular pediatrician was out of the country on emergency family medical leave so we had to see a doctor who is not even permanent in the office but was just filling in. Again another HUGE blessing. She was concerned after we showed her the video and saw the puffyness in Eli's face. She phoned the neurologist because she didn't want to be running tests and drawing blood when the neurologist would be doing their own tests. After their conversation, it was decided that they would do a 5 day Video EEG. Honestly at first I was discouraged. But PRAISE GOD, Eli had an episode for them after he played. The doctor came in and said "I have some answers for you. It is the SSS causing all his issues." The episode he had showed significant brain slowing that started more than an hour before he even started complaining of pain and lasted almost the entire day. Well after he looked fine to everyone else. It basically showed the blood was not going to his brain.

The thing to understand about the SSS is that it is, simply put, "an old person thing" (yes the doctor even said that). It just doesn't typically happen in kids. In adults the SSS usually begins when the person suffers a significant drop in pressure (think heart attack or stroke). One of the complications that can happen after his original surgery (Subclavian Flap Repair - so he's missing part of his artery), is Subclavian Steal Syndrome. But for kids to actually have symptoms is EXTREMELY rare, so most doctors never consider it an issue. We believe it started during his 2009 surgery. During that surgery Eli's MAP's (Mean Arterial Pressure) dropped to 60. They never understood why. I always believed that was significant to the changes we saw in Eli after surgery. I now know why. The MRI he had? It showed he had a stroke. It was small, but it was enough to push the blood the wrong way, cause weakness, memory issues, and some other things. While the neurologist cannot give a date, only that it was more than three months ago, we are 100% confident that is when it happened. All those scary episodes he had? We now know they were stroke-like symptoms. That is one of the other things the SSS causes. It can make you look like you had a stroke. The symptoms last longer than mini-strokes, but just like mini-strokes they don't leave permanent damage until you suffer enough of them.

So basically this is what happens. The blood and oxygen when he is or has done nothing can go from his brain to his left arm and supply both places with what it needs. When he plays and after the arm needs more oxygen, but it can't supply both brain and arm so his brain says "here take mine". So the oxygen goes to the arm and NOT the brain. Insert symptoms now, which vary depending on how well he is listening to his body.

Where do we go from here? We have NO idea. Everything we have read inidicates surgery. But I also don't want to put expectations out there of what will happen. I just know that you can't live without oxygen and blood the amount time he is and NOT suffer permanent damage eventually. The neurologist is conferring with his cardiologist and some adult doctors to see where we go from here.

I'm honestly really at peace now that we 100% know this is what is going on. Of course, my flesh likes to take control and at times has me thinking "what-if". However, when it does I'm forcing myself to go back and just simply praise God for answers as to what is causing this. Prayers for the doctors for direction would be GREATLY appreciated.

Parent/Teacher Conferences

Yesterday we had parent/teacher conferences for both Eli and Dakota. I was very happy my husband got to go with me, as these honestly make me nervous sometimes. I know they both have their own struggles, but I know some people don't realize how they are struggling (including the teachers).

Next year I knew Eli was going to be going to kindergarten. I didn't see a reason he should remain in developmental preschool (DD Pre-K). However, I was nervous about whether they would want to place Eli in a regular classroom with an IEP or developmental kindergarten (DK). I can tell you Eli's wonderful teacher added about 5 years back to my life. He is definitely going into the DK class. They will also be changing some things in his IEP as he goes on so that he will be classed as medically needy. I feel so much better about next year already. And I'm really excited for him.

Since I was so excited about Eli's conference I was a bit more nervous going into Dakota's. After all, I couldn't possibly have two great conferences could I? Well I was WRONG! It went great. He's getting some extra help for reading, his fine motor skills, and some social skill help from the counselor. I'm SO happy about that. He is doing wonderful in math now (he wasn't at the beginning of the year) and he actually likes it. I think he likes learning. And he is becoming a bit more determined when he struggles at something to get it right. What an accomplishment for him!!

I am so grateful both conferences went amazing. Friday we have a test scheduled for Eli. They will be doing conscious sedation. I praying it goes smooth and provides us at least a few answers. Your prayers would be appreciated.

PTSD and Jealousy

The other day a friend and fellow heart mom posted this on her facebook page.

"CHD Awareness Week Day 2: The parents of the kids battling CHD's can suffer PTSD and other mental health issues. We are moody. We cry for reasons that most people don't understand. We are very sensitive when people mention death and when people jokingly make comments like "scared me so much I almost had a heart attack". Even though we have these struggles we are some of the strongest people you could meet as we fight hard for our kids health and battle daily with checking pulses, watching heart rates and worrying about blue spells. If you know my family you know someone with a CHD. Be aware."

Well I am 100% positive I have PTSD. I know there are other heart mommy's who do and have talked about it. I have never talked about my struggle until now. I have never been formally diagnosed, but I'm sure I have it.

For some moms it's being in the hospital. The smell. The sounds of the beeping machines. For me it's my child.

When you watch your child nearly loose his life in front of you, it changes you in ways that are impossible to describe. Watching my child lifeless while I could do NOTHING was THE most horrifying experience I have EVER been through. But what happens when my child has ALL those symptoms and they tell you it's NOT his heart. What happens when your child goes cold/clammy/sweaty, lethargic, pale (to the point of blueness), his breathing changes, headaches, tummy pains, swelling in his face after activity and they tell you it's NOT his heart? The EXACT SAME symptoms he had when we almost lost him. What do you do? What happens when THOSE SYMPTOMS are the triggers for the PTSD? Because those are MY triggers. My friends and family have watched him have the episodes. My BFF (yes 2 years ago in Target?), his speach therapist, my husband, my mother-in-law, and several others. Sometimes he gets one or two symptoms. Sometimes it doesn't seem like anything is wrong at all. Sometimes it feels as if EVERYTHING is wrong. And I can tell you it reminds me of just how in control I am not. Thankfully God is. But the PTSD has still been triggered. And the NUMEROUS emotions have already begun. I don't know how to stop them.

People have different ideas for what to do to help me. One of those is get out of the house and be around people. But when I am around people whose lives are "normal" and who have the ability to take your kids places and do things with them I get jealous. I'm not jealous of people's houses (I actually love the one God gave me). I'm not jealous of their clothes. I'm not even really jealous of their money (although I do wish we had more of it sometimes). I am jealous of their ability to get in the car and go places and not worry whether the place you are in, the event you are attending, the temperature outside, the level of energy needed for whatever activity you are doing, are going to set their child off. They don't have to worry about it. It's no biggy. You get to go and have fun. Meanwhile the awesome activity that I planned for my family, may trigger a horrible episode and I hate the thought of putting my child or myself through that. Even with Dakota's autism I know what some things are going to trigger a stemming session or an emotion outburst, etc. But with Eli I can't begin to tell you really anything.

Of course then you have the realization that if you are going to go out for a night with your husband that ultimately means you must get someone to watch the kids. The is another point of jealousy. You can't simply have the grandparents, aunt/uncle, brother, cousin, etc. watch Eli. I have a couple close friends who I KNOW will and have volunteered. But "normal" kids don't need their vital signs taken in the event even just one symptom shows up. So those few people I do know must know how to take them.

The PTSD has been on my mind a lot since that post on facebook. And at the moment I don't really know what to do with it.

Not Sure

I'm not really sure how to process today's appointment or how I'm feeling. Eli had a cardiology appointment today. I'm sure if they took my blood pressure at some of these they would be rushing me to an adult doctor and forgetting about Eli sometimes. These appointments ALWAYS rattle me. From a cardiac standpoint Eli is VERY stable which is AWESOME and I'm really very happy about. However, being stable doesn't make any of his other symptoms go away. The passing out, the headaches, the tummy aches, the legs pains, the dizziness, the cold/clammy/sweatyness, the shortness of breath, the heart "beeping" spells, the facial swelling, the brain fog and MANY other things that plague him. So while I want to be happy that his heart is so stable I still have to face these nearly every single day.

As a mom we have a natural urge to "fix" whatever is ailing our kids. We don't want to watch them suffer. When they get sick we want to make them feel better. But what happens when the doctors don't have answers? What happens when you don't know how to help them when they are screaming in pain? When it's a cold or a bug going around you get through it and thank God it's over. But there is no end to this. LOTS of his symptoms come when he is active for too long. Some of them come on suddenly when he's just sitting. This is so incredibly hard I really have no words.

I think I just needed to put it out there. I've only mentioned it to one person today. I think I need more time to process.

My Village

I think a lot of people have heard the phrase "it takes a village to raise a child". I 100% agree with this. I could NOT do this without some VERY important people and I want to say THANK YOU to them. They have NO idea how much they mean to me.

First my BFF Susan. Seriously she spent 4 days AND nights in the hospital with me when I had my daughter. She has gotten up at "O too early" to go to cath procedures, surgeries, doctors appointments and therapy appointments. She has given me my sanity back when I seriously thought it was gone for good. She listens to me for hours on end. Never judges me. Knows when to just listen and when to smack me up side the head and tell me to "mom up". She brings me back to reality when necessary and then will let me dream (for just a little bit). There are NO words or deed I could ever say or do to show her how much she means to me. I just hope I can be as good a friend to her when she needs it. I love you.

Second is my Uncle Tim. He has put up with a LOT from me. He comes and watches my children and helps us out during Eli's surgeries and hospital stays, helps attempt to keep me sane while we wait for his surgeries, he comes and helps us when my husband does projects, and the list goes on and on and on and on and on (you get the point). He will be there for me when I say "see you later" to my parents on their last day. Seriously I could NEVER do without my dear uncle. Again no words could ever really express how much he means to me and I could never repay what he has done for us. I love you.

Third is my dear friend A (she prefers her name not be used). Whenever I need to vent or talk about Eli for HOURS ON END she is there WITHOUT judgement. Whatever comes out of my mouth she doesn't judge me. She just prays and gives it to God and lets HIM work on me. She gives me advice that only the mom of a special needs kid can do. She is THE most talented "crafty" person I know. She goes WAY ABOVE and beyond helping create a project or things my kids might need for their special needs. Once again there are no words to describe the gratefulness for her unending support. I love you.

And last (but not least) my dear friends Heather and Paul. They are a newly aquired couple in my "village". Since a great deal of time (physical, mental, emotional, etc.) is spent dealing with Eli (and at times Dakota) my poor dear oldest (now 18 years old which I CANNOT believe) has had to "grow up" in some ways too fast. And I don't have the mental energy to help with certain things. They helped my son fill out some paperwork tonight. What seems like such a simple act to me was COMPLETELY overwhelming. They are helping steer him in the right direction. I CANNOT do this without them. They will NEVER completely understand how much this steering means to me. I will forever be grateful for what they do for Christian. And of course once again, I don't have the words to express my gratitude or the means to repay them. I love you guys.

"My village" is so important to me. I cannot do this without them. I am so grateful God gave me these very important people to help me and my children. To guide them, love them, take care of them (and me). Thank you all for being you and for being a part of "my village".

The Future

As the parent of a child with a broken heart, I often think of what the future holds for Eli. I try not to dwell on it because the world of medicine evolves each and every day. They are constantly discovering new things and coming up with new procedures. Things that were not possible 10 years ago, today are possible. But I still think about things like will Eli ever be able to live on his own? Will he be able to have a job? How will his surgeries get paid for? And then I stop and try to focus on today and what needs to be done. It just so happens yesterday morning before heading off for an appointment at Children's I was reading a post I had responded to previously. This wonderful heart mom, whose son is grown, was giving us her experiences. So as I drove to Children's yesterday I bawled ALL the way there in thought about her response. Knowing that God was using her and her son's life to reach me. And of course she had no idea. As I drove I thought about about this fact - no matter what as Eli grows he will be accountable to God. He will need to learn to love and trust the Savior and allow Him into his life to guide him. THE most important thing is just that. NOTHING more. It won't matter if he can tie his shoes, make his own breakfast, or pay a bill. Accepting Christ and living his life for Him will be it. As I drove I also thought about how I need to be helping him learn to trust and serve our loving Savior. And I thought about the things I need to change in my life. I thought about some of the excuses I've made/make for things and the things that get to me the most. Then today I woke up and a dear friend called to tell me she had a birthday present for me. So she brought it over. And it was a book that I KNOW God encouraged her to buy me. Normally she goes through a process before buying a book. But she just knew she was suppose to buy it so she didn't do any of the normal things she does. And God in His glory knew I would need that book to get over one of my excuses. Seriously He is amazing. And as I sit here and am excited to get started reading I am humbled that in all my sin and ugliness He still loves me and works on my heart. I just pray He helps me teach my son of His awesome love and mercy.

And I wanted to close with this. It is a two part video of a young man who passed on Christmas night. He lost his battle with congenital heart disease. I think he understood what was important.