So Eli was brought up to the team on Monday. EVERYONE is on the same page that something HAS to be done. His symptoms are too bad at this point to ignore. The problem is what do they do? Subclavian Steal Syndrome is just EXTREMELY rare in kids. I have met one other mom with CHD warrior with Subclavian Steal Syndrome. However, the cause for her childs was similar to the cause in adults and that was a blocked artery. So her child's was stented. The same thing they would attempt in an adult. Eli's artery doesn't exisist so that is not an option. But I already explained that in my previous post. This is about ignoring my flesh.
When it comes to the things Eli deals with medically I can stress out. Anyone that knows me in person and TRULY knows me has seen it and it is NOT pretty. When it comes to dealing with doctors? It's even uglier. In the last couple of months my hubby has taken the lead on talking to the doctor in between appointments. This was completely planned by my loving Lord and Savior and I am so very grateful for it. Since he has been the go between it has been so much easier to fight my flesh. I'm the type of person that I need to understand things (at least when it comes to Eli's medical stuff, NOT about technology as that is another matter altogether). If I was still the one calling I would be a basket case right now. Don't get me wrong I still fight it (a LOT). But right now when things come up I'm able to say to myself "Jesus has this". There is a HUGE sense of peace that God is dealing with this. It's all in HIS timing and NOT mine.
So I have to ignore my flesh and let God work out the calls.
The dates.
The decisions.
The outcome.
I think about it.
I start to get lost in what "might" happen.
But then I remind myself God has this. HE brought us to Swedish from our former cardiologist office. HE has the doctor talking with not just the doctors who will do the surgery, but other doctors who work on adults (as this is an "adult thing"). My husband has so lovingly reminded me of the peace he feels that God is leading us in the direction that is best for Eli.
In the meantime, I will continue to ignore my flesh and let HIM lead.
Wednesday, July 18, 2012
Monday, July 9, 2012
Call From Cardiology
So my husband came home from work and the first thing he said was "oh good at least your sitting down". Those are NOT the first words you want to hear when your dear hubby gets home. He went on to explain that the cardiologist called.
On Monday July 16, 2012, Eli's cardiologist will take him before the surgery team to discuss his subclavian steal syndrome. He apparently has been going back and forth with some other doctors and gathering data to present to the team. There are several options and things to consider. Of course they always go from the most invasive to the least invasive. The most invasive is of course is full on heart surgery. This would be very risky since what they would do is bypass surgery. They would take an artery from somewhere else and put it in the spot where Eli's artery doesn't exsist. This is where Eli's original heart problem is though so if his aorta recoarcs then the vessel could tear and kill him almost instantly. This is EXTREMELY risky and most likely NOT the way they will proceed. Another option is to tie off the left vertebral artery (the artery that goes to Eli's brain that now that is stealing the oxygenated blood from his brain). This apparently is normally done during the original surgery, but for some reason they skipped this step (this has been said to us more than once now). The problem with this is that Eli has to have enough "collateral" vessels in order to supply his arm with oxygen. Otherwise he would end up loosing his arm. And the last option is to go in and put basically the opposite of a stent. Instead of opening it up it would reduce the amount of flow that could go that way.
In the end the thing that worries me the most is what affect will whatever they choose to do have on his heart? I honestly 100% believe when they change the pressures of how the blood flows to his brain and arm it WILL change the pressures in his heart and the word "stable" will be on hold for a while.
I can tell you I'm REALLY glad it's VBS week at our church. I truly am needing to be around my fellow brothers and sisters in Christ so I can be brought back to His feet through this. Prayers would be appreciated.
On Monday July 16, 2012, Eli's cardiologist will take him before the surgery team to discuss his subclavian steal syndrome. He apparently has been going back and forth with some other doctors and gathering data to present to the team. There are several options and things to consider. Of course they always go from the most invasive to the least invasive. The most invasive is of course is full on heart surgery. This would be very risky since what they would do is bypass surgery. They would take an artery from somewhere else and put it in the spot where Eli's artery doesn't exsist. This is where Eli's original heart problem is though so if his aorta recoarcs then the vessel could tear and kill him almost instantly. This is EXTREMELY risky and most likely NOT the way they will proceed. Another option is to tie off the left vertebral artery (the artery that goes to Eli's brain that now that is stealing the oxygenated blood from his brain). This apparently is normally done during the original surgery, but for some reason they skipped this step (this has been said to us more than once now). The problem with this is that Eli has to have enough "collateral" vessels in order to supply his arm with oxygen. Otherwise he would end up loosing his arm. And the last option is to go in and put basically the opposite of a stent. Instead of opening it up it would reduce the amount of flow that could go that way.
In the end the thing that worries me the most is what affect will whatever they choose to do have on his heart? I honestly 100% believe when they change the pressures of how the blood flows to his brain and arm it WILL change the pressures in his heart and the word "stable" will be on hold for a while.
I can tell you I'm REALLY glad it's VBS week at our church. I truly am needing to be around my fellow brothers and sisters in Christ so I can be brought back to His feet through this. Prayers would be appreciated.
Saturday, June 16, 2012
Auditory Processing Disorder
A while back during speech therapy for Eli, his therapist (an SLP) informed me she believed Eli should be tested for Auditory Processing Disorder (APD). We had talked about this before, but she is not the type to just jump into these type of suggestions unless she is sure. So we waited for quite a while. The week prior to her making the suggestion she had gone to some updated training on the very subject. While there her mind kept going back to Eli. He displays all the symptoms. Plus apparently kids who have injuries to their brain where they lack oxygen are at risk for this. It can mimic ADHD, but is NOT the same. The problem with getting tested is there really are not a lot of qualified people to conduct the testing (at least not local). 1) Only a qualified audiologist can perform the test. 2) They must be a certain age to test for it. (Eli's not old enough yet since one place is 7 and another place is 8 and he will only be 6 in a month.) 3) There are only certain places technically qualified to test for it. Surprisingly, the one place people would think is qualified, it was recommended NOT to go there by both the school district and his SLP. 4) The test cost over $1,000 just for the test and they do NOT bill the insurance. I don't really want to go through that. 5) We wouldn't be able to do the therapies through them because they are too far away, plus again they do NOT bill the insurance.
Personally I don't need a diagnosis just to have a diagnosis. I don't believe getting an "official diagnosis" will change our lives. He will still be in speech. He will still be on an IEP. And this is NOT something that will require surgery like the subclavian steal syndrome. One of the great things about his teachers is that they completely agree that he has this. I actually asked the SLP and his teachers at school about one of the things that is suggested for kids with APD. It's basically an amplification system (is that the technical name?) that the teacher basically speaks into one piece which goes into an earpiece the student wears. You can have one student, multiple students at the same time, or an entire classroom set up. And he can have this if we think he needs it. His teachers (including his SLP at school) also mentioned that at some point we will need to focus on strategies to help Eli cope once he is not able to improve. They aren't giving up, but it may be a possiblity down the road. (Can I just tell you how AWESOME Eli's IEP team the last two years has been. I'm seriously going to miss them.) So really getting a diagnosis is not really necessary.
After doing some researching on the subject of APD, I discovered that some people who have APD use a combination of ASL and verbal speaking to communicate. Because people with APD struggle with verbal memory, the visual "stimulation" that ASL provides helps them remember what is said. I started to try it with Eli. And it works. They actually use it in school with him as well. So I can obviously see it's not in my head. Luckily for me a very dear friend wants to eventually help families like me who really need to learn ASL. She has been in school learning ASL for a while. It also helps that her daughter is hearing impaired. I am ever so grateful to my friend for helping me learn. And am actually thankful I get to be her "guinea pig" as she goes on her path to realize her goal.
Personally I don't need a diagnosis just to have a diagnosis. I don't believe getting an "official diagnosis" will change our lives. He will still be in speech. He will still be on an IEP. And this is NOT something that will require surgery like the subclavian steal syndrome. One of the great things about his teachers is that they completely agree that he has this. I actually asked the SLP and his teachers at school about one of the things that is suggested for kids with APD. It's basically an amplification system (is that the technical name?) that the teacher basically speaks into one piece which goes into an earpiece the student wears. You can have one student, multiple students at the same time, or an entire classroom set up. And he can have this if we think he needs it. His teachers (including his SLP at school) also mentioned that at some point we will need to focus on strategies to help Eli cope once he is not able to improve. They aren't giving up, but it may be a possiblity down the road. (Can I just tell you how AWESOME Eli's IEP team the last two years has been. I'm seriously going to miss them.) So really getting a diagnosis is not really necessary.
After doing some researching on the subject of APD, I discovered that some people who have APD use a combination of ASL and verbal speaking to communicate. Because people with APD struggle with verbal memory, the visual "stimulation" that ASL provides helps them remember what is said. I started to try it with Eli. And it works. They actually use it in school with him as well. So I can obviously see it's not in my head. Luckily for me a very dear friend wants to eventually help families like me who really need to learn ASL. She has been in school learning ASL for a while. It also helps that her daughter is hearing impaired. I am ever so grateful to my friend for helping me learn. And am actually thankful I get to be her "guinea pig" as she goes on her path to realize her goal.
Saturday, June 9, 2012
Emotions and Talents
I'm an emotional person. Anyone that knows me can testify I cry over anything and everything. I can't help it. I have ALWAYS been like that. If I'm happy, I cry. If I'm sad, I cry. If I'm frustrated, I cry. If I'm mad, I cry. If I'm......... I think you get the point. But it's not just the crying. It's the extreme emotion. If something happens to someone I feel bad deep in my soul longing to comfort or help in some way. When families are in crisis I so badly want to help. When I see children with special needs I want to help give them what they need. I want to be there for the parents. My emotions have always bothered me. It's can be really embarrassing. And frustrating. Over time I have come to accept this about myself. It's not something I really liked, but really just came to accept that it wasn't going to change. Until recently, I looked at these emotions as a burden. I now know differently. I have come to realize this is the talent that God gave me.
Ever since I've given my life to Christ, I have always wondered what my talent was. I looked around and watched people singing in the choir and longed to do that, but never really felt like that was my special gift. Or see the main person leading VBS and wish I could be that outgoing or outspoken. But I've never really felt called to anything. However, last week I went to an event with a friend. Well the event itself was actually canceled, but we didn't know that until we went inside. As I waited for her to find out what was going on I picked up a free brochure that is suppose to help you figure out what your gifts and talents are. So I grabbed one. I took the test a few days ago and wouldn't you know it. The very thing I thought was a burden was the exact thing I'm suppose to be using for Christ.
I have absolutely NO idea what I'm suppose to do with this now. But it does feel good knowing the purpose for why God made my emotions so strong.
Ever since I've given my life to Christ, I have always wondered what my talent was. I looked around and watched people singing in the choir and longed to do that, but never really felt like that was my special gift. Or see the main person leading VBS and wish I could be that outgoing or outspoken. But I've never really felt called to anything. However, last week I went to an event with a friend. Well the event itself was actually canceled, but we didn't know that until we went inside. As I waited for her to find out what was going on I picked up a free brochure that is suppose to help you figure out what your gifts and talents are. So I grabbed one. I took the test a few days ago and wouldn't you know it. The very thing I thought was a burden was the exact thing I'm suppose to be using for Christ.
I have absolutely NO idea what I'm suppose to do with this now. But it does feel good knowing the purpose for why God made my emotions so strong.
Thursday, June 7, 2012
Just An Example
So I have been trying to post some videos for a while. Unfortunately I can only get one to post. Also, please excuse my less than awesome video skills. It's proof I will never be competition for anyone professional.
Anyway, this is what happens to Eli when he plays. Some might attempt to say these are migraines. I assure you they are not. Migraines would NOT happen only when he plays. He would just get them randomly. Also if you watch he will point to the back of his neck. This is where the bloodflow is messed up and skips going to his brain. This is our life. This is what most people don't see. And believe me if I could get one with him actually passing out I would. Unfortunately it's so quick there is no way for me to get one unless I follow him around 24/7. I am thankful we get a break from these when he can't go outside and play.
Anyway, this is what happens to Eli when he plays. Some might attempt to say these are migraines. I assure you they are not. Migraines would NOT happen only when he plays. He would just get them randomly. Also if you watch he will point to the back of his neck. This is where the bloodflow is messed up and skips going to his brain. This is our life. This is what most people don't see. And believe me if I could get one with him actually passing out I would. Unfortunately it's so quick there is no way for me to get one unless I follow him around 24/7. I am thankful we get a break from these when he can't go outside and play.
I also wanted to thank my wonderful son, Christian, for helping me upload this. Can I tell you how much trouble I am in when he moves out? Since videos are an EXTREMELY rare event on here, I can pretty much guarantee they will NEVER happen.
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!
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!
Thursday, April 26, 2012
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.
(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.
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