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.