Heart Hero Update...

Christopher had a sedated echo on Friday, to check out the workings of his little heart.  The sole reason for him being sedated, was because of difficulty getting a clear picture of the heart, when a 2 yr old is screaming his head off.


Ever since Chris was born he's been given shots for the often fatal RSV virus, once a month, during RSV season (about the same time as flu season).  So, from roughly November through April once a month for the last 2 yrs, he's had to get a shot that is, pain wise, one of the most painful shots a kid can get. Then because of his weight and the dosages, this year and one month of last year he had to have 2 every month!!!  And they REALLY hurt. So, every time we go to the doctor now, (actually every time he sees someone in scrubs or a white coat)  he is instantly crying and clinging to me.  This is the primary reason for sedating him during a routine and non-invasive echo.


Skip to the bottom if you want to read the short version.


The verdict:  No news is good news.


Dr.  Chang (primary cardiologist)  really wanted to get a good picture of the 'new' aorta (called 'new' because it is man made by using parts of the left side of the heart sewn together), as well as the tricuspid valve (the only working valve that he has...pumps ALL his blood), as well as check for collaterals (random blood vessels that form) and how his heart squeezes.


Report for the 'new' aorta was good!  No increased coarctation (narrowing) from scar tissue.  No 'leakage'  (means all red blood is flowing through it!  Yay!  That's a good thing).  


Report for tricuspid valve is good.  This is a big one because if that puppy goes out, Chris will be in trouble.  There is moderate regurgitation (that means a moderate amount of blue blood leaks back up with the red blood.)   This is not really good, but it is expected, and it's been present since his OH's (Open Heart operations).  It will always be there, but at least it's not getting worse!  


Now, a bit about collaterals.  I tried to find an article that would explain them to the best of my knowledge. So this is it:


Note:  Areas of interest have been highlighted.

"Collateral vessels are extra blood vessels that connect portions of the same artery or link two different arteries. These alternate blood circulation routes develop in most people and are usually closed to the flow of blood. The collateral vessels can be microscopic or they may grow larger. In some individuals, enlarged collateral blood vessels begin to transport blood. Some cases of active collateral circulation are beneficial, while in other instances, this kind of added blood circulation can cause serious medical complications.  "

Note:  In Chris' case collaterals would cause serious medical complications.

"Doctors may diagnose collateral circulation with the aid of medical tests such as an echocardiogram, chest x-ray or electrocardiogram. In some cases, physicians recommend treatment to close collateral vessels that have opened and enlarged. A cardiac catheterization procedure may be used to place special plugs and coils in the alternate blood vessels and close them off. The plugs and coils cause blood clots to form in the vessels and promote tissue growth that permanently seals these vessels in most instances."

Note:  The following is tough for me to read, but is the primary reason for finding collaterals early so as to close them off without additional problems.

"Some people with collateral vessels develop congestive heart failure, a serious condition caused by an excessive strain on the heart and an inability to pump enough blood. Common symptoms of congestive heart failure include shortness of breath, fatigue and swelling of the ankles, feet and abdomen. Doctors may prescribe drugs such as blood-pressure medications to improve blood flow throughout the circulatory system. Some patients with congestive heart failure undergo coronary bypass or angioplasty surgery as well as heart valve replacement surgery to improve blood flow to the heart.

Collateral vessels may cause endocarditis in some individuals. Endocarditis is an inflammation of the heart valves and inside lining of the chambers of the heart. This condition may be more likely to occur in cases where the heart’s valves have become weakened. Fever, excessive sweating and fatigue are common symptoms of this medical condition. Physicians may recommend long-term antibiotic use or heart valve surgery as treatments for endocarditis."

Source: http://www.wisegeek.com/what-are-collateral-vessels.htm

So there you have it.  I would've tried to explain it, but it really is one of those things that you can't explain in one or two sentences.

Report for collaterals is good.  Dr. Chang couldn't find a single one!!!!!!!! Yay!  This is VERY good.  There still may be tiny ones, but judging by the rest of the pictures on the echo as well as Chris' O2 saturations, if they exist, they are not adversely affecting him.

Report for heart 'squeeze' is good.  This means that as Chris' heart is functioning right now, he is doing fine and doesn't need to up his med doses or add new medicine.  That's always good news!

Also being checked was his pacemaker.  A tech comes in and does an 'interrogation' of the pacemaker.  It gives him a big print out of how his heart has been functioning on it's own, and with the pacemaker.  

Reprt for pacemaker is great! The print out shows, he is pacing his own heart at 98.7% (That is roughly as good as you and me.  Everyone's heart will skip a beat from time to time).  Dr. LaGras (cardiologist that also specializes in pacemakers), was very happy with it, and even felt comfortable turning the parameters down on it, (basically how slow he is willing to let Chris' heart go before the pacemaker kicks on) in an effort to save some battery life.  It's estimated battery life is 5-7 yrs.  

Short version:

Everything is looking really good!  No real change from his appointment 6 months ago.  All the doctors were pleased with his growth and his heart function.  Anytime we are told 'we'll see you in six months', we are really happy!  We are really blessed with how amazingly well he has done.  I think it's pretty safe to say that he couldn't be doing any better than he is right now!  He has half a heart you know?!  (you couldn't tell it by looking at him (except his scar)).

~Much love to all and many thanks for love, thoughts, and prayers!  Those are what get us through the tough times! 

Fixed post and signing...

I was informed that the videos were not coming through on the last post.  It's probably because I tried to upload them all at once.  Forgive me, it seemed faster at the time.  I suppose I will do it one at a time from now on.  Hope they are working now.  There are some really classic videos in the mix.

I was talking to my Pediatrician at Chris's 2 yr well child check, and she was really amazed at how many words he can say, and that he puts 4 or 5 word sentences together.  I informed her that he is just that awesome and how could she expect less?  Just kidding. I let her know that I started signing with Chris when he was a little under 1 yr old.  I did this for purely selfish reasons, remembering how frustrated Tyler used to get at that age, with my lack of understanding what he was trying to tell me.  I wanted to minimize that frustration as much as possible.

Here is a video of Chris a month or so after he started signing.  He is quite the talker now.  I'll take a vid of that!  :]

He rarely signs anymore, probably because I only knew so many before I started running out of signs to teach him!  Now he just talks and talks and talks.  He still remembers the signs, he just uses the word now instead.

ps in this vid, I ask him the sign for 'drink', he promptly does it, and I am totally oblivious to it!  lol  He also does his own variation of dog, which I totally miss, because I'm waiting for him to do the sign the way I taught him.  But little kids will do their own easier variation first and then work toward the 'real' sign.

I remember teaching him:  eat, drink, more, juice, milk, apple, banana, pear, berry, watermelon, water, orange, cracker, sandwich, diaper, dog, cat, bird, horse, fish, bath, please, thank-you.  There are more, but I just quizzed myself and these are the only ones I can remember.  I bet if I asked him, he'd know way more. I highly recommend signing.  Just like anything else, you need to be patient.  The first 2 or 3 signs he learned took awhile, and I was started to get frustrated signing to myself.  Once he got them though, he picked up the others in a matter of minutes!!