I know it's been a while since I last updated. As quickly as things were going good it seems they went bad. What makes it most frustrating is that it is dejavu from two years ago. Two years ago I saw a lot of symptoms that were unexplained. When I went to the very people who were suppose to help us (doctors), to find a cause even if they couldn't fix it, we were ignored. They did the patronizing appointments and gave us opinions that were as good as the average Joe who is NOT a doctor. We finally found someone who was willing to help and found the cause. A cause I might add I already knew it was but no one would believe me. That is until she ran tests and came up with undeniable evidence. But as always no one is cautious with my child. And so here we are. After Eli's surgery after Thanksgiving, no one ran tests to check the bloodflow in his arteries that go to his brain. This should have been a given. But no one did anything. In March Eli could not straighten his neck. It was stuck. If I knew how, I would post the video of him complaining it was stuck (being technologically challenged stinks to say the least). Anyway, a couple weeks later he started complaining of pain at the incision site where they did the surgery. He wasn't just complaining a little, he was complaining a LOT. So I thought it best to get him checked out. The general surgeon who helped with his last surgery ordered it. While the graft area looked great, his left vertebral artery is now missing. The surgeons did NOT expect this. The general surgeon then called the adult surgeon who did the surgery. He gave an explanation of what he thought could have happened, which he said the steal was so great the artery clotted itself off. Meaning he has a massive clot it his vertebral artery. But then proceeded to tell me that it was okay. Um NO!! So we got another doctor to order a test to check the left vertebral artery. As always that doctor had no idea what he was doing (or talking about) and told us he needed a different test and we should go back to neurology. Our question is WHY IS NEUROLOGY NOT FOLLOWING MY CHILD ALL THE TIME!!! While the symptoms directly relating to the Subclavian Steal truely are gone, he now (ever since the neck got stuck) has recurrent headaches (none resulting in vomiting, sensitivity to sound or light, etc.), sporatic slurred speech, dizziness, lack of focus, etc. Every single person has a different answer for what it is. Ninety percent attempt to give a simple answer.
I am angry and completely discouraged. I really could get to the place of acceptance with his medical situation if a doctor was following him (someone besides the pediatrician and cardiologist), being cautious, not blowing us off because of an inaccurate opinion. I could get the place of acceptance even if it's something that cannot be fixed. Even if the answer is "I don't know". At least he would be followed. And to be completely honest, I'm angry with God for not giving us the doctor who is going to follow him.
I could type so much more, but no one really knows what it's like to be in the position of watching your child and have them be in some sort of pain nearly EVERY DAY of their life. No explanations, no help, NOTHING. Everyone says to just go to a different doctor. I so wish the answer was that simple. But we have reached out to dozens of doctors with NO HELP. I'm angry.
Wednesday, May 15, 2013
Thursday, December 27, 2012
Merry Christmas
I am so sorry I have not updated sooner. I'm not sure what I was waiting for. After surgery I tend to come home and get very lazy and almost hermit like. So that is what I'm going to blame it on.
When it comes to heart surgeries most people think of going through the sternum. However, there are several different ways to go about correcting whatever it is that needs correcting. Some are much harder and are strickly reserved for certain cases so most are done one of three ways. Besides going through the sternum you can go under your arm, through your back, the neck, or the cath lab. And I even think I've heard of a very small number of people/kids who have gone through the tummy. Eli has had most except the tummy and back. Eli's surgery was through his neck this time. However, they had to use one of his own arteries because the material they typically use in adults will not last. Not just because of growth but because it just doesn't last in kids and usually fails almost immediately. Going through the neck can be VERY difficult to say the least. There are just too many things that can go wrong so they don't do it often. In fact the doctors at our children's hospital don't and have never performed the surgery he had because it's just that rare. So when it came to surgery day, the doctors were positive there would be complications (because that's just how Eli is). However, much to EVERYONE'S surprise (including ours) Eli's surgery went better than perfect. He didn't even need a blood transfusion and he was extubated in the OR. Win-Win all the way around. However, because of all the excitement of how wonderful things went he was given a drug he wasn't suppose to get. It was only one dose but we were a little upset nonetheless. The doctor came in later and explained what happened, how to fix it in the future and even gave us some helpful information to take to the allergist about his allergic reaction to the adhesives that are necessary to put on him during surgeries. He was a great doctor inspite of the error. Also after surgery it took them a VERY long time (like 3 1/2 hours) to get Eli to our room. To say we were a little frustrated was an understatement. Then after he got to the room his oxygen level was only 88. Um not okay. His normal is 99 to 100%. I got the nurse and they put oxygen on him, but I'm not sure why I needed to be the one to say anything. They have monitors at the nursing station and should have been watching since he just came over from PACU. But because they didn't order it from there they didn't see a need to watch it. Grrrrrrrr!! Anyway, it was fixed. Anyway, I have several more gripes I could complain about but I won't.
What I REALLY want to tell you about is the positive changes we've seen. And we are not the only ones that have seen it. Friends and family alike have noticed too. When you are deprived of oxygen you get "spacey" and have trouble focusing. Your memory is affected too. Almost immediately after we came home we noticed Eli didn't have nearly as many problems focusing. Before he seemed to be almost lost and appeared as if he had ADD (Attention Deficit Disorder). That seriously is almost gone. And his memory? While not perfect (kids who have been on the heart/lung machine often have memory problems), it has improved greatly. Possibly because he can focus, but I'll take it. Eli does a LOT of pretending. He has a GREAT imagination. It really is incredible. But before surgery it was like the only thing he could do. I think because it didn't require a lot of focus. And because he couldn't really keep up with his brother, he tended to play with his sister and the girl stuff a LOT. Now, he's playing superheros and dressing in the boy dress up stuff. He's playing cars, and anything else a boy would love to play. In years past when he would get his Christmas presents he would be excited for them, but he would almost immediately take over his sister stuff. This year? He's played with all his stuff almost non-stop. A dear friend, whom my children now call grandma, gave Eli a castle for Christmas. It included knights and everything. He LOVES it. He played with it almost all day with periodic breaks to play superheros.
Seriously I could not have asked for a better Christmas present than that. To have my child be able to play, remember, and focus. I honestly was not sure if he was going to be able to go into a mainstream first grade class next year. Those fears are gone. He will most likely still need some extra help, as Eli marches to his own drummer, but I am much more confident that he can do it.
And one last thing before I go, my cousin started a prayer page for Eli on facebook. Since I tend to be on facebook more often you can look for periodic updates there. Yes there will still most likely be sporadic, but they may be more often and it's easier for me to respond with people there. I did send out one email so I hope that person received it. Anyway the page is https://www.facebook.com/#!/pages/Prayers-for-ELI/483014765062169 Merry Christmas all!!!
When it comes to heart surgeries most people think of going through the sternum. However, there are several different ways to go about correcting whatever it is that needs correcting. Some are much harder and are strickly reserved for certain cases so most are done one of three ways. Besides going through the sternum you can go under your arm, through your back, the neck, or the cath lab. And I even think I've heard of a very small number of people/kids who have gone through the tummy. Eli has had most except the tummy and back. Eli's surgery was through his neck this time. However, they had to use one of his own arteries because the material they typically use in adults will not last. Not just because of growth but because it just doesn't last in kids and usually fails almost immediately. Going through the neck can be VERY difficult to say the least. There are just too many things that can go wrong so they don't do it often. In fact the doctors at our children's hospital don't and have never performed the surgery he had because it's just that rare. So when it came to surgery day, the doctors were positive there would be complications (because that's just how Eli is). However, much to EVERYONE'S surprise (including ours) Eli's surgery went better than perfect. He didn't even need a blood transfusion and he was extubated in the OR. Win-Win all the way around. However, because of all the excitement of how wonderful things went he was given a drug he wasn't suppose to get. It was only one dose but we were a little upset nonetheless. The doctor came in later and explained what happened, how to fix it in the future and even gave us some helpful information to take to the allergist about his allergic reaction to the adhesives that are necessary to put on him during surgeries. He was a great doctor inspite of the error. Also after surgery it took them a VERY long time (like 3 1/2 hours) to get Eli to our room. To say we were a little frustrated was an understatement. Then after he got to the room his oxygen level was only 88. Um not okay. His normal is 99 to 100%. I got the nurse and they put oxygen on him, but I'm not sure why I needed to be the one to say anything. They have monitors at the nursing station and should have been watching since he just came over from PACU. But because they didn't order it from there they didn't see a need to watch it. Grrrrrrrr!! Anyway, it was fixed. Anyway, I have several more gripes I could complain about but I won't.
What I REALLY want to tell you about is the positive changes we've seen. And we are not the only ones that have seen it. Friends and family alike have noticed too. When you are deprived of oxygen you get "spacey" and have trouble focusing. Your memory is affected too. Almost immediately after we came home we noticed Eli didn't have nearly as many problems focusing. Before he seemed to be almost lost and appeared as if he had ADD (Attention Deficit Disorder). That seriously is almost gone. And his memory? While not perfect (kids who have been on the heart/lung machine often have memory problems), it has improved greatly. Possibly because he can focus, but I'll take it. Eli does a LOT of pretending. He has a GREAT imagination. It really is incredible. But before surgery it was like the only thing he could do. I think because it didn't require a lot of focus. And because he couldn't really keep up with his brother, he tended to play with his sister and the girl stuff a LOT. Now, he's playing superheros and dressing in the boy dress up stuff. He's playing cars, and anything else a boy would love to play. In years past when he would get his Christmas presents he would be excited for them, but he would almost immediately take over his sister stuff. This year? He's played with all his stuff almost non-stop. A dear friend, whom my children now call grandma, gave Eli a castle for Christmas. It included knights and everything. He LOVES it. He played with it almost all day with periodic breaks to play superheros.
Seriously I could not have asked for a better Christmas present than that. To have my child be able to play, remember, and focus. I honestly was not sure if he was going to be able to go into a mainstream first grade class next year. Those fears are gone. He will most likely still need some extra help, as Eli marches to his own drummer, but I am much more confident that he can do it.
And one last thing before I go, my cousin started a prayer page for Eli on facebook. Since I tend to be on facebook more often you can look for periodic updates there. Yes there will still most likely be sporadic, but they may be more often and it's easier for me to respond with people there. I did send out one email so I hope that person received it. Anyway the page is https://www.facebook.com/#!/pages/Prayers-for-ELI/483014765062169 Merry Christmas all!!!
Tuesday, November 6, 2012
It's A Date
We FINALLY have a surgery date. November 27th. We were very shocked because the surgeon called on Saturday to give us the date (I didn't think they worked on Saturday's, or at least didn't make phone calls to set up surgeries). I did good all weekend not really worrying or thinking about it. Until Monday. I had some house cleaning to do. I was sweeping the family room and the emotions started. I got frustrated with the inability to get the dog hair off the floor or rugs (someone needs to come teach me because I'm failing miserably at cleaning the floors). Basically I threw a big adult sized tantrum (okay it probably wasn't that bad). I took a breather and realized it wasn't the dog hair making me emotional. It was surgery looming. Then I started to panic about Thanksgiving. My in-laws are going out of town. We typically spend holidays with them as traveling is too hard on Eli sometimes. But with surgery days away from Thanksgiving this year traveling would be even more out of the question. However, my in-laws will be going on a trip (they can't change the date) and I wasn't sure they would want to have it at their house either since they will be leaving 48 hours later. And of course I don't want to worry about doing it at my house. So another mini-panic ensued trying to figure out what we will do for the holidays. Thankfully we got things figured out. My mother-in-law agreed we should have it at their house and we will just take the leftovers home since they won't really be home to eat them. Win Win!!!
Then of course today I start looking at the calendar and realize that depending on if Eli has any (even minor) complications he could be out of school until after Christmas. Everyone tells me not to worry or think about complications, but for us they are the rule and not the exception. He has pretty much had a complication with every surgery. Some minor. Some major. Because of that they become very difficult not the think about. I mean seriously this surgery is actually partly because of a complication due to his very first surgery SIX YEARS AGO!
Waiting is the hardest part in all this. We are glad we have the month to prepare Eli, get hubby's work situated, get Eli's schooling taken care of, and of course all the other odds and ends of preparing so such a big event. But it's still hard.
Today I am focusing on being thankful we have a date and that God knows the plan even though I don't.
Then of course today I start looking at the calendar and realize that depending on if Eli has any (even minor) complications he could be out of school until after Christmas. Everyone tells me not to worry or think about complications, but for us they are the rule and not the exception. He has pretty much had a complication with every surgery. Some minor. Some major. Because of that they become very difficult not the think about. I mean seriously this surgery is actually partly because of a complication due to his very first surgery SIX YEARS AGO!
Waiting is the hardest part in all this. We are glad we have the month to prepare Eli, get hubby's work situated, get Eli's schooling taken care of, and of course all the other odds and ends of preparing so such a big event. But it's still hard.
Today I am focusing on being thankful we have a date and that God knows the plan even though I don't.
Wednesday, October 3, 2012
Light At The End?
This "journey" within our journey has been long. And at times it has felt tortuous. I have always wanted to be able to walk into a doctor's office, trust what they are saying, and walk out with peace that I could trust their opinion. Unfortunately, that has not been my experience. It takes an enormous amount of prayer not only mine, but others praying with me as well before I walk into a doctor's office to discuss Eli and what is going on with him. Sadly, my hubby and I have realized doctor's are a trigger for my PTSD. Probably NOT a good thing when you have to take your child to the doctor's often. Fortunately, God has given my hubby a job that allows for him to be off on Eli's "big" appointment days without affecting the rest of his leave so he can help me when it strikes.
I was actually trying to wait until we had an official date to "update" on what is happening, but God has led me to update now. Eli will be having surgery. He will be having a carotid-subclavian bypass using his internal iliac artery. The doctor who will be performing the surgery is a geriatric doctor (meaning he treats older people). I cannot explain to you the looks we get as we walk into the doctors offices or the questions my hubby gets as he calls. It's one of those things that we look at through this and actually makes us laugh. Anyway, this doctor has to get permission from our Children's Hospital to perform the surgery there. Once that happens we will have one more conference with him in the office so we can ask him questions.
It's one thing when your child is having a surgery lot's of other's parents have been through with their kids. It's a COMPLETELY different when there is no one to ask questions. Right now I can only imagine or guess some things and it can be overwhelming. Luckily I have some amazing friends who have given me "pep talks" when I've needed them to help me regain my focus on Christ and allow Him to carry me through this.
I was actually trying to wait until we had an official date to "update" on what is happening, but God has led me to update now. Eli will be having surgery. He will be having a carotid-subclavian bypass using his internal iliac artery. The doctor who will be performing the surgery is a geriatric doctor (meaning he treats older people). I cannot explain to you the looks we get as we walk into the doctors offices or the questions my hubby gets as he calls. It's one of those things that we look at through this and actually makes us laugh. Anyway, this doctor has to get permission from our Children's Hospital to perform the surgery there. Once that happens we will have one more conference with him in the office so we can ask him questions.
It's one thing when your child is having a surgery lot's of other's parents have been through with their kids. It's a COMPLETELY different when there is no one to ask questions. Right now I can only imagine or guess some things and it can be overwhelming. Luckily I have some amazing friends who have given me "pep talks" when I've needed them to help me regain my focus on Christ and allow Him to carry me through this.
Wednesday, July 18, 2012
Ignoring My Flesh
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.
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.
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.
Wednesday, March 28, 2012
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.
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.
Saturday, February 11, 2012
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.
"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.
Monday, February 6, 2012
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.
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.
Thursday, January 5, 2012
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".
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".
Wednesday, December 28, 2011
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.
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.
Wednesday, November 30, 2011
Getting Behind
Yes I am way behind in blogging. I guess I should update a few things. We had an appointment with a new cardiologist at a new clinic on Monday. Both my husband and I liked him. He gave Eli the official diagnosis of Shone's Syndrome. I think it's hard to argue with the fact that the surgeon said at one point "His cardiac anatomy is consistent with Shone's Syndrome". He explained some things about blood pressure between the legs and arms that I didn't know about before and overall totally understood why Eli struggles so much in school and other areas. We really felt like we were heard. He also through out another term. Dysautonomia. I'm not sure that he diagnosed him with that or not. He just told us to not be surprised when we read that in the clinic notes. He is wanting to talk to their neurologists to get their imput and possibly to send us there first. He 100% thinks that some of Eli's issues are neurological. I think I need to sit on that for a while before asking any questions.
But really the being "behind" I'm talking about is delays in Eli's speech, development and overall learning. It's really quite obvious. He is in speech therapy (he has been for over a year now) and Developmental Preschool (his second year), where they also do speech. As I was sitting in therapy today it dawned on me that Eli doesn't use a ton of 3-4 or more syllable words. I mean he does use some, but not a lot. His therapist always gives us worksheets to do at home. And when we did his worksheets in preparation for today I realized what a struggle it was for him. I mentioned it to his therapist, but we try not to "visit" too much since Eli needs as much time as he can get. I held back in asking her about it fully. I'm not sure why. She really is wonderful and I could have but I tried to push it to the back of my mind. Then I came home and it came to the front of my mind like a smack in the face. I've tried pushing these thoughts to the back of my mind before. And then I look at Faith and realize that she will eventually pass him up. This makes it really hard to develope friends with people whose children are typical developing. They don't get this place I'm in. Some who are here can have a great attitude and go about life as if it's perfect. I'm not one of those people. It hurts so deep I cannot express with words the feelings it evokes. It really bothers me. People talk about all the things their kids are doing (and they have a right to brag) and Eli can't do some of the things children three years younger than him are doing. It really breaks my heart. It's hard for me to watch.
Parents of typical children don't really understand this place. They try to comfort me and say things to make it seem as though Eli will get better. Or things will get easier. This is why I love the few friends I do have. They don't try to get me to believe something I know will never be true. I am so thankful for that.
Anyway, I've been trying to just sit and be joyful in the things God has given me. They are perfect in His eyes and really that is all that matters. It's my flesh that's bothered. So I've been trying to ignore my flesh. Today was one of those days though that got to me. Where my flesh took hold and allowed me to be sad for all the struggles Eli will always face. I just felt I needed to let it out somewhere. So here it is.
But really the being "behind" I'm talking about is delays in Eli's speech, development and overall learning. It's really quite obvious. He is in speech therapy (he has been for over a year now) and Developmental Preschool (his second year), where they also do speech. As I was sitting in therapy today it dawned on me that Eli doesn't use a ton of 3-4 or more syllable words. I mean he does use some, but not a lot. His therapist always gives us worksheets to do at home. And when we did his worksheets in preparation for today I realized what a struggle it was for him. I mentioned it to his therapist, but we try not to "visit" too much since Eli needs as much time as he can get. I held back in asking her about it fully. I'm not sure why. She really is wonderful and I could have but I tried to push it to the back of my mind. Then I came home and it came to the front of my mind like a smack in the face. I've tried pushing these thoughts to the back of my mind before. And then I look at Faith and realize that she will eventually pass him up. This makes it really hard to develope friends with people whose children are typical developing. They don't get this place I'm in. Some who are here can have a great attitude and go about life as if it's perfect. I'm not one of those people. It hurts so deep I cannot express with words the feelings it evokes. It really bothers me. People talk about all the things their kids are doing (and they have a right to brag) and Eli can't do some of the things children three years younger than him are doing. It really breaks my heart. It's hard for me to watch.
Parents of typical children don't really understand this place. They try to comfort me and say things to make it seem as though Eli will get better. Or things will get easier. This is why I love the few friends I do have. They don't try to get me to believe something I know will never be true. I am so thankful for that.
Anyway, I've been trying to just sit and be joyful in the things God has given me. They are perfect in His eyes and really that is all that matters. It's my flesh that's bothered. So I've been trying to ignore my flesh. Today was one of those days though that got to me. Where my flesh took hold and allowed me to be sad for all the struggles Eli will always face. I just felt I needed to let it out somewhere. So here it is.
Friday, September 9, 2011
It's Coming
The world of CHD (Congenital Heart Defect) families tend to become a close group of people. While our experiences may be different, we share a common bond among ourselves. And of course like other causes people have blogs. A few of these ladies I have followed for quite some time. They are encouraging, uplifting and tell it like it is when words fail me. Without knowing they have helped me overcome emotions and get on with the life that the our good Lord and Savior gave me. Three of these amazing ladies are fortunate enough to be giving away a CD. This is no ordinary CD though. This CD is by none other than Matt Hammitt of Sanctus Real. Matt's son Bowen was born with one of the most severe CHD's a person can be born with called Hypoplastic Left Heart Syndrome. I only learned of Matt's son earlier this year. His music has been a huge blessing to me and his newest CD is and will be no different. It is coming out next week. If you want the chance to win and hear a snippet of his amazing music go Here, Here, and/or Here.
Wednesday, August 3, 2011
5 Years
Five Years ago today God gave me a miracle as our lives were turned upside down. Our beautiful baby who seemed so healthy showed us his heart was broken. Eli went into cardiogenic shock (due to heart failure) and we nearly lost him. But God gave us a mircle. HE brought him back.
After his first surgery.
I was in such an ingnorance is bliss state when we first found out. I didn't know what a congenital heart defect really was. I didn't know it is THE most common birth defect, affecting 1 in every 100 babies. I thought they could just fix it like they fix a broken bone and we go home with no other issues. That was so far from the truth. Our lives are filled with doctors appointments, therapy, special education, and watching him for signs of cardiac emergencies. It's waiting for the shoe to drop and hear he will have to undergo another surgery. And with each surgery he endures knowing that he may not wake up. Or he may have to have a permanent pacemaker implanted. Or numerous other senarios.
It amazes me that when a woman is pregnant they push for all sorts of tests. All but ones that are MOST needed to detect the most common birth defect. Heart defects. In this day of modern medicine there is so much hope for these babies. Yet sadly some of these babies die UNNECESSARILY. There are life saving surgeries and procedures that can be preformed to save them, but they go home with an undected heart defect and pass away.
I am truly thankful for my amazing son. He fills our lives with such joy. Joy that is irreplaceable.
After his first surgery.
I was in such an ingnorance is bliss state when we first found out. I didn't know what a congenital heart defect really was. I didn't know it is THE most common birth defect, affecting 1 in every 100 babies. I thought they could just fix it like they fix a broken bone and we go home with no other issues. That was so far from the truth. Our lives are filled with doctors appointments, therapy, special education, and watching him for signs of cardiac emergencies. It's waiting for the shoe to drop and hear he will have to undergo another surgery. And with each surgery he endures knowing that he may not wake up. Or he may have to have a permanent pacemaker implanted. Or numerous other senarios.
It amazes me that when a woman is pregnant they push for all sorts of tests. All but ones that are MOST needed to detect the most common birth defect. Heart defects. In this day of modern medicine there is so much hope for these babies. Yet sadly some of these babies die UNNECESSARILY. There are life saving surgeries and procedures that can be preformed to save them, but they go home with an undected heart defect and pass away.
I am truly thankful for my amazing son. He fills our lives with such joy. Joy that is irreplaceable.
Tuesday, August 2, 2011
I Can Fix That
So yesterday was Eli's cardiology appointment. Somehow I dread them more and more every time. Not because I don't like his cardiologist, because he's actually an awesome doctor. Eli's heart is just very complicated. He has lots of issues. In fact, when people ask what his specific heart problem is, it's easier to say "Shone's Complex without the Mitral Ring". He's hasn't been diagnosed with it because his cardiologist is of the practice he has to have 100% of the symptoms to be diagnosed with it (not all are under this practice). And he actually has more issues than that. And I'm okay with that fact. It would change absolutely 100% NOTHING so it's okay. He is watched for all the same stuff, treatment is still pretty much the same and I get a mental break from having to accept that diagnosis. So we call him Shonesesk.
So on to the appointment.
When we first got called back the first person we saw was the same echo technician (I'm sure there's a different name for his title) who gave us bad news two years ago. He's a nice guy and VERY good at his job, but it still makes you nervous. (Dejavu is not always nice.) So he does the echo and we go wait for Dr. C.
I have to say most of the appointment was a blur because God helped me focus on the good and not the bad. Dr. C acknowledged that at some point in time we WILL hear the word SURGERY dun dun dun (evil music). So it's a matter of WHEN not if. So before every appointment we walk in having prepared ourselves (if that's even possible) for the fact that today might be THE day. Dr. C acknowledged our nerves being normal and understandable. Well yesterday was NOT the day to hear the evil word. PRAISE JESUS!!! For now his heart is stable. PRAISE JESUS!!! Eli has several things wrong, but it seems that changing one of his problems affects the other(s). So even though yes he needs things fixed they really NEED to wait until they are forced to deal with them. Because at some point Eli's body WILL determine what needs addressed the most. So stable is AWESOME!!! However, we also needed to address the subclavian steal syndrome (more we just needed things confirmed) and the other "episodes" he's having. The subclavian steal really cannot be completely fixed. And it's VERY dangerous to do something unless he's basically passing out from it. And none of us think the passing out he's doing is from that. We think it's something else. Eli's cardiologist is a "sudden death" doctor (those are words you do NOT want to really hear). He is an amazing man with skills that I am so grateful and thankful that God gave him and he uses. Basically what this means being a "sudden death" doctor is he deals with the hearts pacemaker system. So his specialty is dealing with arrythmia issues. It's what he does. And he in his gut as a doctor and knowing Eli so well believes what we are seeing is an arrythmia problem. (He is actually surprised Eli doesn't already have a permanent pacemaker from his other surgeries.)
We had an event monitor sent to us which we got Friday. The one they sent has wires that attach to Eli from the machine. The machine actually can work two ways. It can either use the wires placed on Eli and the device can be in his pocket when you press the button. OR You can hold the machine up to him and when you press the button it will take the reading properly as long as the machine is against his chest. Easier said than done on a wiggly child. The problem with the wireless one (besides the wiggle factor) is that if I have the machine and he's accross the playground then the chances of getting the machine on him and the button pressed in time decreases. So if you have the wires attached to him then anywhere he is the button can be pressed even if he's the one that does it (I don't trust him yet to do this). The problem is this.
See the rash? He's allergic to the glue. We already knew this before but most of the time we just deal with it and most of the time it's not so painful and itchy. That's after less than 72 hours of wearing the machine. Can you imagine what 27 more days would do? So unfortunately we changed the machine to the cordless version. He then talked about a type of monitor that is implanted. (Stef - I totally had dejavu when he talked about this and thought of you and your amazing heart warrior.) He also talked about a procedure you can do in the cath lab and manipulate the heart to go into arrythmia's. The problem is that this only works for fast arrythmia's. I don't believe all of Eli's are fast. I do believe some of them are, but I think some of them are slow. So unfortunately I don't think that is really a great option either. In the end of this conversation though, Dr. C sounded almost hopeful that if it has to be anything, arrythmia's would be the cause. Because? "I can fix that" says Dr. C. And I believe him that he can deal with them. It is the heart and this Eli so at some point this becomes not true. But compaired to the subclavian steal he can fix it. The subclavian steal cannot be fixed. He mentioned a procedure called an ablation. I'm still a bit puzzled by it. My hubby related it to me in terms of being an electrician and the signal getting caught up before it gets to where it needs to go. So the next plug doesn't have power. It eventually does get the power back, but the ablation kind of fixes this short. At least for the time being.
The other thing pressing on my mind is how Eli is when he is physically active. His therapist, the school teachers, and well most people that truely know him and watch him see how he struggles when he plays like a typically active 5 year old should. He gets short of breath, grabs his chest and gets cold, clammy, and sweaty all at the same time. Not to a point of needing to call 911, but enough where he is forced to sit down or go do a sitting down activity. Normally Eli does this on his own so it's so subtle that most people don't even know it's happened. I was finally able to ask about activity level. This can be tricky. Because at some point you don't want him using his heart as an excuse to limit himself. But at the same time you don't want him having a heart attack either. So I told Dr. C. what we do. If we go somewhere like the zoo or the mall or anywhere he is going to need to walk a great distance we make sure we have a stroller he can ride in. If we are at home I let him jump and run and play with his brothers and sister and friends. If he gets to a point where he is not making himself rest and it's obvious (he's screaming in pain, can't breath, etc.) then we step in. We hardly ever have to step in because he forces himself to slow down but this has happened. So while I don't eliminate specific things from his activity, I do watch him and make sure he has an option to sit if he needs to. And he said that was an awesome plan. He said although his pressures are stable while his is laying down for the echo it does not shock him that his pressures go to much higher rate when he's active and that in turn makes him have lots of symptoms. And some might think that he would need to rest more or be restricted more. The problem then becomes me having a lazy teenager with a heart problem who uses it as an excuse rather than having a valid reason. Think of the boy who cried wolf when I ask him to walk 100 feet to go get the mail. It's behavior that can backfire if you encourage it. The ultimate would be to do a stress test. This would help us GREATLY. However, since he's 5 years old he can't really do it. He won't be able to follow all the speed up, slow down, do this, do that orders. So for now we go on Eli's symptoms and resting pressures via the echo.
Honestly I'm still trying to process the appointment. There are no words to describe how happy I am he is stable. That doesn't mean his heart doesn't have problems or that he's okay. It just means he's not in a place to need surgery yet. For that fact I am grateful.
One thing I have always said to my husband and I've mentioned it to Dr. C and I'm sure other people is that I truely believe Eli will have a permanent pacemaker at some point as a minor. I believed this before Eli's 2009 surgery. Before any of the doctors realized how many other heart problems he actually has including his risk for arrythmias. I honestly without a doubt believe this is why God gave us Dr. C. And as scary as these arrythmia issues and the thought of them are, I am glad God is easing me into them a bit slower than coming out of surgery in complete heart block suddenly.
So on to the appointment.
When we first got called back the first person we saw was the same echo technician (I'm sure there's a different name for his title) who gave us bad news two years ago. He's a nice guy and VERY good at his job, but it still makes you nervous. (Dejavu is not always nice.) So he does the echo and we go wait for Dr. C.
I have to say most of the appointment was a blur because God helped me focus on the good and not the bad. Dr. C acknowledged that at some point in time we WILL hear the word SURGERY dun dun dun (evil music). So it's a matter of WHEN not if. So before every appointment we walk in having prepared ourselves (if that's even possible) for the fact that today might be THE day. Dr. C acknowledged our nerves being normal and understandable. Well yesterday was NOT the day to hear the evil word. PRAISE JESUS!!! For now his heart is stable. PRAISE JESUS!!! Eli has several things wrong, but it seems that changing one of his problems affects the other(s). So even though yes he needs things fixed they really NEED to wait until they are forced to deal with them. Because at some point Eli's body WILL determine what needs addressed the most. So stable is AWESOME!!! However, we also needed to address the subclavian steal syndrome (more we just needed things confirmed) and the other "episodes" he's having. The subclavian steal really cannot be completely fixed. And it's VERY dangerous to do something unless he's basically passing out from it. And none of us think the passing out he's doing is from that. We think it's something else. Eli's cardiologist is a "sudden death" doctor (those are words you do NOT want to really hear). He is an amazing man with skills that I am so grateful and thankful that God gave him and he uses. Basically what this means being a "sudden death" doctor is he deals with the hearts pacemaker system. So his specialty is dealing with arrythmia issues. It's what he does. And he in his gut as a doctor and knowing Eli so well believes what we are seeing is an arrythmia problem. (He is actually surprised Eli doesn't already have a permanent pacemaker from his other surgeries.)
We had an event monitor sent to us which we got Friday. The one they sent has wires that attach to Eli from the machine. The machine actually can work two ways. It can either use the wires placed on Eli and the device can be in his pocket when you press the button. OR You can hold the machine up to him and when you press the button it will take the reading properly as long as the machine is against his chest. Easier said than done on a wiggly child. The problem with the wireless one (besides the wiggle factor) is that if I have the machine and he's accross the playground then the chances of getting the machine on him and the button pressed in time decreases. So if you have the wires attached to him then anywhere he is the button can be pressed even if he's the one that does it (I don't trust him yet to do this). The problem is this.
See the rash? He's allergic to the glue. We already knew this before but most of the time we just deal with it and most of the time it's not so painful and itchy. That's after less than 72 hours of wearing the machine. Can you imagine what 27 more days would do? So unfortunately we changed the machine to the cordless version. He then talked about a type of monitor that is implanted. (Stef - I totally had dejavu when he talked about this and thought of you and your amazing heart warrior.) He also talked about a procedure you can do in the cath lab and manipulate the heart to go into arrythmia's. The problem is that this only works for fast arrythmia's. I don't believe all of Eli's are fast. I do believe some of them are, but I think some of them are slow. So unfortunately I don't think that is really a great option either. In the end of this conversation though, Dr. C sounded almost hopeful that if it has to be anything, arrythmia's would be the cause. Because? "I can fix that" says Dr. C. And I believe him that he can deal with them. It is the heart and this Eli so at some point this becomes not true. But compaired to the subclavian steal he can fix it. The subclavian steal cannot be fixed. He mentioned a procedure called an ablation. I'm still a bit puzzled by it. My hubby related it to me in terms of being an electrician and the signal getting caught up before it gets to where it needs to go. So the next plug doesn't have power. It eventually does get the power back, but the ablation kind of fixes this short. At least for the time being.
The other thing pressing on my mind is how Eli is when he is physically active. His therapist, the school teachers, and well most people that truely know him and watch him see how he struggles when he plays like a typically active 5 year old should. He gets short of breath, grabs his chest and gets cold, clammy, and sweaty all at the same time. Not to a point of needing to call 911, but enough where he is forced to sit down or go do a sitting down activity. Normally Eli does this on his own so it's so subtle that most people don't even know it's happened. I was finally able to ask about activity level. This can be tricky. Because at some point you don't want him using his heart as an excuse to limit himself. But at the same time you don't want him having a heart attack either. So I told Dr. C. what we do. If we go somewhere like the zoo or the mall or anywhere he is going to need to walk a great distance we make sure we have a stroller he can ride in. If we are at home I let him jump and run and play with his brothers and sister and friends. If he gets to a point where he is not making himself rest and it's obvious (he's screaming in pain, can't breath, etc.) then we step in. We hardly ever have to step in because he forces himself to slow down but this has happened. So while I don't eliminate specific things from his activity, I do watch him and make sure he has an option to sit if he needs to. And he said that was an awesome plan. He said although his pressures are stable while his is laying down for the echo it does not shock him that his pressures go to much higher rate when he's active and that in turn makes him have lots of symptoms. And some might think that he would need to rest more or be restricted more. The problem then becomes me having a lazy teenager with a heart problem who uses it as an excuse rather than having a valid reason. Think of the boy who cried wolf when I ask him to walk 100 feet to go get the mail. It's behavior that can backfire if you encourage it. The ultimate would be to do a stress test. This would help us GREATLY. However, since he's 5 years old he can't really do it. He won't be able to follow all the speed up, slow down, do this, do that orders. So for now we go on Eli's symptoms and resting pressures via the echo.
Honestly I'm still trying to process the appointment. There are no words to describe how happy I am he is stable. That doesn't mean his heart doesn't have problems or that he's okay. It just means he's not in a place to need surgery yet. For that fact I am grateful.
One thing I have always said to my husband and I've mentioned it to Dr. C and I'm sure other people is that I truely believe Eli will have a permanent pacemaker at some point as a minor. I believed this before Eli's 2009 surgery. Before any of the doctors realized how many other heart problems he actually has including his risk for arrythmias. I honestly without a doubt believe this is why God gave us Dr. C. And as scary as these arrythmia issues and the thought of them are, I am glad God is easing me into them a bit slower than coming out of surgery in complete heart block suddenly.
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