My 4 1/2 yo daughter had a St Judes Valve...

[MadsDad]

placed in her aortic valve position Friday. They gave her first dose of Coumadin last night. I'll be honest with you, this drug scares the crap outta me. I understand that a clot is a really bad thing, and that scares me worse. This is her third open heart surgery, and hopefully her last. They were able to put an adult size valve in her. My question is, "Is life on Coumadin that bad?" and "Will a five year old girl still be able to do the things she has loved to do like running and playing?" She gets nose bleeds really bad, and now that she is on Coumadin, I fear we may not be able to stop the bleeding. Does anyone have any comments or advice?

When you had your new valve in place, did you notice a difference in your heart effeciency? Her heart sounds totally different now, it sounds normal. Before, it sounded like an out of balance maytag, her chest literally would vibrate.

Currently my daughter is in CICU at Childrens Hospital of Atlanta.

They have taken the drainage tubes out this morning, and she seems to be in alot of discomfort. I will check back later today.

 

[Ross]

It's amazing at what a properly functioning valve can do for a heart isn't it? Yes it does make all the difference in the world about how the heart sounds and operates.

I left you an answer to the rest in your post in the Coumadin forum.

 

[atydev]

Hello

Hello

I just wanted to tell you that my prayers are with you and your precious daughter. I am so sorry she has to go thru this so young. As a mother I know you are having such a hard time. My prayers and heart go out to you. I know your daughter will do fine and believe me I know what it is like to see your chest vibrate. I watch mine do the same. I have not had my valve replaced yet. I am waiting on a mitral and aortic valve replacement a blockage to be removed and an extra pathway to be closed off. So keep your chin up and God will do the rest.

Best of Luck
April

 

[Raverlaw]

MadsDad,

I think you will find a lot of helpful information on this board. Please search the archives and threads, or post any questions you might have.

I've only been on Coumadin for two weeks now. I, too, suffered from frequent nosebleeds prior to surgery and wondered whether Coumadin would make them impossible to stop. Even though we have had some cold, dry weather (when the nosebleeds usually occur), I haven't had any significant problem.

My surgeon told me that if a problem occurs, an ENT doctor can easily cauterize the veins in my nose that cause the problem.

My prayers go out to you and your daughter for a full recovery. When she has recovered from the operation itself, you will be amazed at the increase in her energy and stamina from having a functional valve!

Best wishes-

 

[Christina L]

Bless your daughter's heart. I think I will stop feeling sorry for myself now.

Your daughter is so young to be going through this, but know that she will be fine, the pain will go away and she will be one "wise" little girl - she will go on to live life SO fully, you will see! Once you all get comfortable with the Coumadin and as the years go on, you will forget about the valve most of the time and life will almost become "normal" again.

God bless you all.

I urge you to use this VR.com board for support - there are others here who have had children who have had valve surgery. It helps tremendously to talk with others who have been through this.

Christina L.

 

[MadsDad]

Hard to believe the child could have more..

Hard to believe the child could have more..

energy than she did before. That's what the doctor's have told us as well. When they went in to do the repair/replacement, the surgeon found that a repair to a VSD (hole in the Heart) from her first surgery had resulted in scar tissue forming and creeping it's way into the Aortic Valve, destroying one of the 3 leaflets. He made the comment that he could not believe how unnaffected she seemed by this. She could run, play without ever slowing down. She virtually had no symptoms that anything had really changed. They found it in the routine echo, and confirmed with a cath. She did have very little weight gain in the last 6 months, and had actually lost weight over the last four weeks. So it was time to fix this thing. It seems like each time I go back, she is improving. Now she is sitting in her Mom's lap watching the disney channel. Her appetite still is not there, but she is drinking. She isn't even really complaining about the pain. She just wants to go home. Hard to believe she had the surgery about 48 hours ago.

This child was actually looking forward to surgery like it was a school field trip. One of the first things she said when coming around was "Did I get my new valve Mommy?" We said yes and she just smiled. It is amazing how much simpler life is without fear. Had I been in her shoes I would have been scared to death. I'll keep updating for those who are interested.

 

[Marvin]

glad to here she is sitting up and watching alittle tv. Kids seem to come though things better then us adults. As a parent I know how hard it has to be for the both of you. It is hard to watch our childen hurt and there is nothing that we can do to really help them except to hold them in our arms. We will keep all of you in our prayers. Please keep us informed as to how she is doing.

 

[Ross]

She isn't going to have much of an appetite for a couple of weeks, that is normal. Food tastes way off for awhile.

I don't blame her, I'd want to go home too! She sounds as if everything is going just fine. Be alert to the fact that should the hospital try to get her to drink ensure or boost or something of that nature, that it is very high in Vitamin K content and will make her INR plummet. You'd think the hospitals would know this, but they don't. Be aware of it!

 

[Bryan B]

MadsDad,

It sounds like you have a brave little girl! That's also great news that they were able to fit her with an adult size mechanical valve.

It's interesting how I learn something new every time I come to this site. I'm a big boy now (43) , but I'm just now getting my VSD repaired. I'm also getting my aortic valve replaced due to damage done by the VSD and recent endocarditis. Your comment on the scar tissue from the VSD patch has given me one more thing to ask my surgeon during our pre-op disscussion.

I wish your daughter a speedy and pain free recovery!

 

[bethanne]

Kids are so amazing! The hardest part of being a parent is knowing how much they trust and count on us as parents.

I am 41 and waiting for a surgery date. I have tried to view the caumadin issue similiar to what diabetics go thru paying attention to what they eat as well as intake of insulin. As with all things you do what you have to do. Sounds like your daughter is in good hands and she has loving parents who are there for her. That's awesome.

There are alot of people here who are very knowledgeable. It's a good place to ask questions and gather feedback! Keep us posted!

 

[Karlynn]

Dear Madison's Dad,
God keep you all healthy now. Madison and you and her Mom because she needs the both of you healthy too.

If I were a betting person, I would bet that Madison will not have to live her life on Coumadin. They are already talking about a much safer replacement for some who use Coumadin (not valvers yet) and the way medical science progresses, I think there is a lot to hope for.

As far as Coumadin goes. I would imagine that your doctor will write a scrip for a home testing unit. This will be your best tool. The other positive side is that most children really hate to eat green things I've been on Coumadin for 12 years with no issues. She'll be living a life similar to a child with diabetis in that she'll need to be careful about her nutrition and have to test her blood (but not daily)

We have a wonderful resource in Al Lodwick and we all "use him and abuse him", so join in and learn from his warfarin expertise.

You have my prayers for a continued successful recovery for Madison.

 

[MadsDad]

Update

Update

Karlynn and everyone,
Thanks for the uplifting news, I will tell you one thing, IT HAS HELPED ME TODAY.

Now for Madison, just minutes ago, she told us she wanted to walk to the potty. The nurse disconnected all her IV lines and hooked up a portable oxygen tank. We walked all the way across CICU, I was holding one hand while mom was holding the other. She is such a brave little girl, as are all the kids in this hospital. Being here alone will give anyone a reality check. Madison has officially been discharged to the step down unit out of CICU, however, all the beds are already taken, so CICU for us again tonight. I will post another update tommorow. Thanks again for all the wisdom and kind prayers.

God is Good........All the time.

 

[Granbonny]

Maddy's Dad

Maddy's Dad

I am so glad you came to our site. I live in Georgia, too..in Helen, the Bavarian Village..Carla lives in Lawrenceville, Ga...and Julia in Lagrange, Ga....Look under Members at top of forum..click on their first initial.. Like C..J or me Granbonny under G's... Click on their names..then their e-mail..also Sjj and Suz live here in Georgia..too...so you have a big support group here.... All you need to do is e-mail us..My son is a policeman with Lawrenceville Ga. police Dept. Where is Logansville? I think near there? Where is the Children's Hospital in Atlanta? I had my VR 2 years ago at St. Joseph's in Atlanta. Am on coumadin..no problem..Just take a pill a day. Post a picture of Madison soon...so she will be our Poster Child.. Bonnie

 

[bvdr]

Welcome to VR. Thank you for telling us about your brave little girl. Kids are so amazing!

I too would recommend you push for a home test unit for her coumadin monitoring. It sometimes takes a while to get the dosage worked out but then it smoothes out. You will just have to get a medication box or some other system that reminds you of her medication every single day. You might have a few hitches with the nose bleeds but that is fixable. I have a feeling that with loving parents and a lot of prayer she will do just fine.

Her bruises may get bigger than other kids and may have some limitations for contact sports and such but for the most part she will probably do the stuff every other kid does.

 

[Harpoon]

Transposition of the great arteries eh????


I got that. =)

Got a St Jude's valve a little later than your daughter did, at 29.5 years, but I was kinda lucky I guess. =)


If she holds up well after surgery, if she doesn't run into more complications and is given a proper chance to heal herself and her heart, she should be just fine, inspite of the coumadin and whatever else.

There are at least a dozen folks in here who are avid runners, marathoners. There are other atheletes, waterskiers, climbers, all kinds of people.


I started taking kung-fu AFTER getting my St Jude's valve.

Life after valve surgery goes on and it can be quite normal.

I've talked a number of times to parents with kids who've just gone through (or are about to go through) open heart surgery and I say the same thing all the time. As long as their recovery is good and they start to thrive in their developement after surgery, they should be FINE and the best thing you can do as a parent is stand back and watch them go! =)

That's what my parents did. They were scared shitless, scared that I'd become a couch potato or would keep overexherting myself or get into some kind of trouble that would land me in an emergency room (or worse) but they stood back anyways.

They knew enough to trust my body's basic instincts to STOP when it gets tired or out of breath.

Your daughter will do that too. Let her find her limitations, let her decide how much is too much, and how much is not enough. =)


The coumadin can be a drag, it requires frequent monitoring and adjustments as you change your diet, or take differeing medications, or get sick, but it's not an end all to physical activity, especially for a child.

Let her run and play. She'll scrape her knee and you'll apply the band-aid and send her on her way, her knee might bleed a little more than "average" and it might take a little longer to clot up, but if her clotting factors are within normal ranges then she should be just fine.


It's more important to her health and well-being that she's allowed to be as normal and active as she wants to be.

My parents never held me back from anything. I have a brother who's two years younger than I am and we've always been involved in the same activities for the most part. He took on poll vaulting in high school and lacross in college, I didn't have an interest in either, but then I always wanted to play hockey and never got the chance, he just liked watching....


I know it can freak you out at times, I have a 4 year old son that I'm contantly trying to protect and yet I'm also tryign to let him learn on his own and sometimes that means getting hurt once in a while. It's hard to find that balance some times.


She will leaarn what's best for her and her body if you let her go and figure it out for herself. Limiting her in her activities won't work and for a number of years as a toddler and beyond, she won't have any ability to understand the reasons for those limitations. Kids that age have no fear and no comprehension of the consequenses of their actions. They need to lean than through experience, unfortunately....

 

[Missy]

I really feel for your daughter having to go through with this. She is too young to have to deal with such things. However , children are strong and she will probably do just fine. As parents though it is probably harder on you than if it was happening to you. It is so hard to watch your child suffer or hurt. So try to think of it as a happy time that things are going to be better for her. And you.
Good luck.

 

[MadsDad]

Update March 8th, 4 am

Update March 8th, 4 am

Madison is rolling right along! It is hard to believe it is less than 72 hours since she had her surgery. I swear, I see hourly improvements. She is walking to the bathroom every couple of hours now, holding her own drink, turning over on her side on her own. Her personality is starting to come back as well.

Granbonny, Loganville is about 10 minutes from Lawrenceville. Maybe your son can help me get out of my next speeding ticket. Those Lawrenceville police are all over the place.

Harpoon, your words ring true. If my wife and I had set her limits based on what we thought was safe, she would just sit around and watch TV. However, Madison has two cousins who live very close that are her same age. Guess what? You can't stop her from doing everything they do. Climbing, running, running, running, dancing, you name it. We have only stopped her a couple of times when we felt she was very winded. She did all that with severe aortic insuffeciency. We are in for it when she gets home with her new valve. She was feeling of her chest a little while ago and said "Daddy, it's beating slow, it feels good"
I just about lost it. I let her listen to her heart with the stethascope, she said "It even sounds better" I think she may have been repeating what she has heard said, but even so, it was music to my ears.

Well, they ran me out while they were doing an X-ray, I'm gonna head back in. Thanks again everyone.

 

[Karlynn]

Keep posting the good news. Sounds like you and your wife may need the cardiac rehab after Madison is fully recovered.

 

[Nan]

So glad that Madison is doing so well!!! And it sounds like you are doing better too. I think it was probably harder on you and her mom than her from what you say. She sounds like a real trooper.

She will no doubt be fine on coumdadin/warfarin...as others have said, there is lots of information here, especially from Al Lodwick. And there are several athletes on this site who seem to keep on going with coumadin on board.

If at all possible you might see if whoever is managing her coumadin has a finger stick monitor (pro-time or coagucheck) so as to avoid lots of venous draws. Or even better, if you can actually get a monitor for home use.

Lots of luck to all of you.

 

[KimC]

MadsDad,

Wow. You've put things into perspective for many of us. I am humbled by your strength. You must have lots of support through family, friends and your community.

It's truly remarkable how good is God. Your daughter was His before she was yours, and He loves her. Fear no evil.

I had many complications during my pregnancy and afterwards but know God's hand was over us. My son, Coulson had a long bout of pneumonia, but seems fine. I'm taking him to a pediatric cardio, more for my own reassurance than anyone telling me to go.

My oldest daughter, (I have two), is six. I bet she would love to play with Maddy. She's heard some talk about heart stuff, and takes it in stride. She doesn't like me to drink coffee be/c she heard my husband say how bad caffeine is for the heart.

Keep posting.

Warm regards,