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.

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.

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.

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.

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.

Another Event Monitor

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

How Are You?

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

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

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