Friday, July 18, 2008

Dear Noah........your cardiology visit.......

First of all Noah I am SO PROUD OF YOU! You did so very well for the EKG AND echocardiogram of your heart today! YEAH!!!!!! Here is a photo of you having your EKG done.....and you laid so still and did not scream and cry and have a fit like the first time 4 years ago.

The doctor today did also hear the murmur.......but she also heard this click/sucking sound and said the fact that you was born with low muscle tone...made her concerned there could also be something wrong with your heart.

So they did an EKG...that was fine.

They did an echocardiogram......and that showed your AORTIC VALVE was not right. There are supposed to be THREE leaflets in the valve to allow blood to flow to the aorta and out to the body. You only have 2 ...she said it looked like 2 of them had fused into one so you were probably born that way.

This means blood is not getting pumped to your body like it should all the time....and sometimes it leaks blood backwards.......etc. She also said that usually someone born with this will have tissue in the aorta itself that will not be right....which means it could eventually NARROW or BULGE OUT.......and that could cause problems. I don't need to mention that the AORTA is the biggest blood carrying artery in the body.

Anyway....we don't know if these are new symptoms for you....or something you were born with, for sure. We don't know if it has progressed or is the same and considered stable for now. They sent home a heart monitor thing I can put over your chest to monitor your heart when you have one of your spells where you say your heart is "pounding" in his chest. We do that if that happens for the next month, recording the beats on a special gadget they loaned us for a month and we call in the recordings.

You go back in 6 months for another ultrasound of your heart. If it looks the same we will monitor your. You will have to be monitored forever however....this will just determine how often. If things are not the same, we will tackle things I guess if and when we have to.

This will have to be monitored....because sometimes it can worsen....and this means surgery to try to correct your valve OR valve REPLACEMENT......and if the aorta itself becomes narrowed or bulges outward...she made it sound like there may not be much they could do for that other than trying to send a balloon via angioplasty up in there to open it up. Not sure if they can do anything if it bulges out..especially where your would be located...that then is considered an aortic aneurysm as far as I know.....and sometimes they can operate and fix it...other times not and you just live with it. This is right up inside your heart....right past the aortic that is different than when it is an abdominal aortic aneurysm. (She said this would be one of the most serious type of surgeries on the heart....and if Noah did develop a bulge/aneurysm and it ruptured....he would bleed to death instantly and die). Hence the monitoring.

I have some research to do on my end and more questions.

I am not sure if this means OPEN HEART surgery could be possible one day or if they could do it all via like angioplasty..some valve replacement surgery no longer requires open heart. The LOCATION of this may require it though...again I am not sure. I will ask questions and do more research and find out. IF you ever have to have a MECHANICAL valve you would then have to take blood thinner medication the rest of your life. If a tissue could avoid that. Time will tell...
What bothered me was the doctor kept reaching out and touching my hand and asking me if I was why? Is this really really horrific news? BAD long-term outcome? Noah has no restrictions now...he can be as physically active as he wants..etc.

If he were to worsen it would be noticeable by him being more fatigued by exercise....which already happens...........shortness of breath or chest pain.....and fainting...because blood would not be getting to his body like it should.

SO.......we are finally home. My throat is sore......I still need to do some work after I make Noah some cookies. I did not do but about 1-1/2 hours before we had to leave this morning. We ran into construction at least 5 times......we still got there in time though.

I am going to pray for you Noah....please pray for him too. I am going to pray God will heal your heart and make it like new it will work well and be fine forever! You also HAVE to keep your mouth and teeth very clean.....any bacteria or sore throat viruses that travel into your system could settle in your heart causing endocarditis....not a good thing. They do not recommend antibiotics prior to dental procedures anymore she said...or put someone like you on antibiotics long-term...because of the side effects from the antibiotics .....they are greater than the helpfulness of the antibiotics in preventing damage to your heart.

so anyway.......

I love you Noah....forever I will!



photowannabe said...

My prayers are with you, Noah and the entire family. Its a heavy load for one so young.
Peace to you

Melinda said...

thanks for the prayers!

Osh said...

dear Noah, my prayers are with you and your family. I love your smile!

The 4th Sister said...

Noah you look like a very good boy to me...

Betsy said...

Lots of prayers and good wishes to you!

Renie Burghardt said...

You are such a good looking boy with a nice smile, Noah. Many prayers and good wishes coming your way. Take care and keep smiling!

Renie, a friend of your grandma's.

Wanda said...

Noah, you don't know me, but I am a friend of your grandma's and she told me about the problem you are having with your heart right now.

You look like a very brave young man. I want you and your mom to know we are saying prayers for you in California.

Love and Hugs

Old Lady Lincoln said...

Dear Noah,
Mommy said you did really well at the hospital today. Glad everything went smoothly for you. See, neither test really hurt, did it? Grandma has had both test done quite a few times now. Glad they know what might be going on and will be keeping a close eye on you. Love you to the moon and back. Have a great week-end and stay inside, it's going to be really hot out side. See you later alligator.
Love, Grandma & Grandpa

Casdok said...

Didnt he do well keeping still!

Oh i do hope dear Noah will be ok.

Nancy said...

Noah, you have my prayers, you can count on that! Keep your chin up and look to God to heal your heart. He CAN do it!!!

Noah, you are one good looking young man!!!

I'm a blogging friend of your grandma's.

Love you!

Old Wom Tigley said...

Hi Noah
My you have had a hard time of it, but from all I've heard and read about you, your, mum and dad, aunts, uncles, and the old wrinkles (grandperants) you are surrounded with the best love possible. You have a great team behind you, and with their love alls well for sure.
What ever the outcome of all these test you stand up and be counted, I wish you well not just now but all through your life and maybe when you are a grandpa writing a blog like grandpa Abe, my grandchildren will call by one day and read all your life stories and see the great pictures you take.
All the very best Noah


Lorraine said...

Noah, you look strong, and I pray that you remain so, Blessings :)

Anonymous said...

I like your picture with all the clips stuck on you because it makes you look like some space man or a robot man. How cool is that.

I am also glad you were able to do both tests without any problems. These kinds of tests are about the only way the doctors can find out if everything is OK.

Take care of yourself. Stay inside where the air is a lot cleaner than it is outside.

Grandpa has a bladder infection and I hope to get over it soon.

Love you and your mommy.

Grandpa Lincoln

Melissa said...

Hi Noah....

I had not been on the computer last night, so I saw this today. I'm glad you were such a brave little guy and they got the tests run on you. Audrey and I will certainly have you in our prayers. Love you guys!

Gramma Ann said...

What a brave little guy you were, Noah. All those tests must have been a bit scary, with all the wires and things attached to you. But through it all you remained still and didn't move...I don't know it I could have done that good!!!

I hope you continue to improve in your health, and I will be thinking about you and your Mommy often.

I hope you have a fun day today...

Jack and Joann said...

Noah, I'm a blogging friend of your grandpa and grandma and I just want to say that folks all around the world will be praying for your good health and keeping both you and your wonderful mommy in their thoughts.

Cat said...

Pulling for you in California!

motherofanothernoah said...

I pray that everything will be fine, chances are it will, as Noah has been heathy thus far :) and he's had only 2 all along.

Love ya'll

Treasa said...

Noah, you don't know me. I'm not even sure your Mom knows me, but your grand parents do.

Anyway, Be strong and brave and I'll send prayers that you'll be okay.

I wonder, if next time, since they'll be doing an untrasound anyway, if they'd mind playing just a little and let you see how your tummy works with your breakfast? I've seen it, it's sort of gross and strange, and sort of cool, like Halloween, all at the same time!

kinnigurl said...

Noah - you are such a beautiful gift in this crazy world and your mom is so very special. You are both in my thoughts and prayers.