Brief intro & valve repair ?

[gijanet]

My three year old daughter Katie was born with a very complex combination of congenital heart defects (I'll spare you the gory details - they are in my sig line if you are interested.). She had the BT shunt surgery performed at 2 weeks of age and a bilateral bidirectional glenn when she was 12 months old. We had a good two years, despite the fact that my husband was deployed with his National Guard unit for 11 months during that time, and were simply enjoying life, waiting for Katie to get big enough for her extracardiac fontan surgery. Katie was doing incredibly well and was a bundle of energy, despite the fact that her sats stay around 80.............until our November 2003 checkup. Katie's common AV valve (her mitral and tricuspid valve are merged) had always had a mild to moderate leak, but the regurgitation, much to our dismay and shock, was now re-classified as severe. Katie's surgeon in Michigan was optimistic that he could repair it, so off we went.

April 9th was her pre-op; April 12th was her cath and TEE; and April 13th was her open heart surgery to repair her AV valve. The surgery appeared to be successful; the post-op echo showed a 1+ regurgitation, which her surgeon was very happy with. (We knew that there was going to be residual regurgitation.) Her discharge echo showed a 2, which her surgeon was still happy with, considering the abnormality of her valve and the fact that it had been a full 4 before surgery. We had some post-op issues (pleural effusion, etc.), which are slowly resolving.

Then we received another devastating blow last week at her follow-up, which was one month post-op; her valve regurgitation is already back to a moderate 3...........not quite as bad as pre-op, but almost. OUr surgeon had warned us this was a possibility; that is why he wanted to hold off on her fontan, but everyone was hoping that the repair would "hold" at least for a few years to delay Katie's having to be on Coumadin for a while longer. Needless to say, I have been depressed to no end. I put my child through yet another open heart surgery for nothing. I know we had to try, but that is not providing much comfort right now.

Our local PC, whom we dearly love, tried to dangle a small carrot of hope in front of me. He said that occasionally a valve repair will look good immediately post-op, look worse 1-2 months out, and then, once the valve "settles," it will look better. He did add that this was very rare, but that it has happened. I am so hoping that this is the case with us. Since Katie's combination of defects are about a billion to one, I figure we might have a shot at it................so my question for now is this:

Has anyone undergone a valve repair that looked bad one to two months post-op, but then got better? I have exhausted all of my congenital heart defect boards, so I thought I would try here.................... I hope there is someone out there who can keep my hope alive..............

I also thought I had better go ahead and join this board as my common sense side says that we are most likely looking at a mechanical valve here in the very near future. Our surgeon told us that if the valve repair was not successful that he would replace Katie's valve when we do her fontan. ( He said that replacements are quick; repairs take much longer.) I just can't wrap my mind around this fact yet, but when I do, I am sure I will have many more questions. Putting a 3 year old, especially as one as rambunctious as Katie, on coumadin scares the hell out of me.

In the meantime, I so hope there is someone out there who can share a repair story that will provide me with hope. Prayers are greatly appreciated. Katie's carepage can be found at www.tlcontact.com carepage name: KatelynSteffen .

Thanks for listening and your input.

 

[Ross]

While I can't offer any good news in the valve department, I can say that the prospect of a child on Coumadin really shouldn't scare the hell out of you. Sounds to me like the "Coumadin Monsters" have been doing their work again. People blow the effects of the drug completely out of whack. They live from the stone age. Sure a child is likely to get cuts, scraps, and everything else that happens as they grow, but it doesn't mean that because they are on Coumadin, they'll bleed to death at the littlelist of things. Bleeding is stopped the same way as before, it just takes a little longer then normal to achieve a clot.

She is so cute and I hate to see her go through yet another surgery, but in the long run, if she doesn't and this repair doesn't straighten up, none of it was worth it. It's just so darn hard to watch little ones with these problems, but there are many.

 

[Sherry]

Janet,
Wow, I know how hard it is to be the heart patient, let alone be the mother of such a young heart patient. I wish I could offer you some advice about the repair; I have an uncle who had a successful one, and mine was unsuccessful during the time of surgery. The surgeon just switched to an artificial midstream so I never had time to live with the repair. If she needs the artificial and has to go on Coumadin, then I agree with everything Ross said. Coumadin is not the big bad bogeyman all the medical personnel like to make it. I'm not a totally compliant patient in terms of diet and activities, and I somehow have made it work for seven years. Many others on this board would probably say the same. I will keep Katie in my thoughts and prayers and will look forward to hearing updates from you. Take care, Mom, and BTW, tell your husband thanks for his tour of duty. My brother and sis-in-law just returned a few months ago from tours in Iraq and Afghanistan.

 

[Karlynn]

Janet,
Such a beauty Katie is. Children are so resilient. We adults couldn't withstand half of what Katie's been through and still be smiling her beautiful smile.

Try not to have guilt over putting her through the repair surgery. It sounds like something that needed to be tried.

I'll echo the others comments on Coumadin. Katie should be able to lead a normal life on Coumadin - and it sounds like there would be no stopping her! Bike helmet for bikes and skateboards and scooters, but then everyone should do that. She may have more bruising, she may not. I was a banana before Coumadin, still am, but it's no worse.

We have a member who hasn't posted in a month or so, but his daughter had a mechanical valve installed a few months ago and she is 4. She was big enough that they could put an adult sized valve in and are hoping this will mean no more valve surgeries. He sent pictures of her on her bike the day she got home from the hospital. His member name is Madsdad.

Last, but pretty big, is our member Al Lodwick. He is an incredible expert on warfarin (Coumadin) He has his own web site at www.warfarinfo.com, and is here daily answering our many questions. He could do a lot to set your mind at ease on Coumadin. As Ross said, there's a lot of really bad information being given by doctors and others that just simply isn't true, or isn't as bad as they would have it sound.

Welcome to our family. Please keep us posted on what is going on. We'll offer what ever support we can.

PS - just noticed you posted 4 hours ago. Were you up doing what mothers do best - worrying? Hang in there Janet. You are all in my prayers.

 

[jenlynn72]

Janet,

I'm so sorry about your sweet daughter. She's so cute. I am not a mother so I can't imagine what you are going through right now, however I can comment on being a young patient. I just wanted to add that I started taking coumadin when I was 10 and it really wasn't bad at all. I just had to stay out of gym classes and not play any contact sports. I still rode my bike all the time and roller skated and swam and played with my friends. There were blood tests, of course, but I was so used to all the needles by then that they were no big deal.

I also wanted to welcome you to this site. The people here are absolutely wonderful and will be able to answer most of your questions, and be there for you through hard times. There is always someone here to listen, please remember that. I will say a prayer for you and Katie.

Jen

 

[Bill Hall]

Janet - Sorry to hear about your difficult story. I would not expect the valve to get better, however, I think it is very possible it won't get any worse. I had the mitral valve repair and everything has worked out well for me so far. I lived a long time while it was moderate. Also wanted to mention that I broke both legs and an arm when I was very young, but don't remember anything about it. I know your daughter is going through a lot at this time, but I would expect things to work out well in the long run, and she probably won't remember the bad experience. Good luck.

 

[catwoman]

Janet:
When did you move to Arlington? You mention a surgeon in Michigan and are now in Arlington...
There have been children on Coumadin -- look up items about Madison, under MadsDad, I think. If you run a search on "Madison" at this website, I think you'll find them. Haven't heard anything lately from her dad, so I'm guessing she's doing spectacular. She's maybe 4, 5.
What cardio and surgeon are you using and where are they located?

I live in Aledo, work in downtown Fort Worth. Run through Arlington all the time to DFW Airport and en route to my parents' home in NE Dallas.

 

[Guest]

*eyes Janet inquisitively*

Is this the same Janet (& Katie) I know from the CHD Webring?

*raises eyebrow*

*awaits reply*

Whether you are or not...welcome . And, of course, hoping for the best for Katie. And, btw, if I survived coumadin with all of the driving and cleaning cars (washing, waxing, etc.) I do...anyone can .

Cort, "Mr Road Trip"/"The Uniter", 30swm w/pig valve & pacemaker
member & newsletter editor, Faith COB, Batavia IL
"Mr MC"'s Family...& train & models = http://www.chevyasylum.com/cort/
K's BL = http://forums.demonsoftware.com/index.php?showforum=15
Spotting MCs = http://www.chevyasylum.com/mcspotter/main.html
MC's Future = http://www.projectmonte.com/petition/

 

[Lorraine]

Welcome to our vr.com family! This is the place to come to for comfort, compassion, information and understanding. We will try to answer your questions to the best of our ability.


What a beautiful little girl. Sorry to hear about her needing a mechnical valve. It's not the end of the world though. Children are resilient. They learn to adjust to their life as it is, because they never have had known any other life. Your daughter will be on Coumadin and will have blood test, but she will know this is part of her life. She can still do most of the things her peers can do. She'll just learn to be a little more careful. She will have bloodtest but if you can get a home machine that would be great. A little finger prick (which in my estimation doesn't really hurt) and the test will be complete. You will be able to monitor he INR with no problem. As long as her INR stays within range she wouldn't have any risk of bleeding or a clot. She will probably bruise more just because she is an active little girl. I will keep yo both in my thoughts and prayers.

 

[tobagotwo]

The picture of Katie in the hospital just completely breaks my heart.

I can't imagine how it must tear you up to hand that sweet little girl over to the surgeons to do their work. All you want to do when you see that too-wise, little face is protect her - But in order to do the best for her, you have to pull your hands back and let her go with them. God bless you with the strength to do that for her.

I have no information of value to give you, but know that I will be thinking of your little girl, and hoping for her valve to beat the odds.

Very best wishes,

 

[gijanet]

Thank you!

Thank you!

Wow! I'm actually at a loss for words (Believe me, this is rare for me. Right, Cort?And yes, it is I! How many other gijanets do you know? So this is where you have been hanging out.........still want to know how that echo of yours turns out).................so guess I should start with a thank you.

Thank you all for your warm welcome, your kind, compassionate words, your sympathy, your prayers, your stories, and your wealth of information. I am slightly less intimidated by the thought of coumadin than I was earlier, but I have to confess, only slightly. And, Ross, you are right - I have envisioned coumadin as basically turning my child into a hemophiliac, so thank you for putting that bad boy (or should I say monster?) to rest. Since Katie is on one baby aspirin a day, she already bruises very easily and they last forever. She still has a bruise on the inside of her arm from where they drew blood a week ago. My biggest concern is with trying to regulate the INR in a growing child who is subject to growth spurts, etc. I have heard some real nightmare stories from parents on this one. Jen, I would be very interested in getting your perspective on this.

Anyway, I am sure that I will have many more questions once our gameplan is in place, and I will be sure to check out Al's website in the meantime. OUr local PC has mailed Dr. Bove Katie's echo tape, so that Dr. Bove can review it and compare it with Katie's discharge echo; then he will get back to us. Our PC said that this would probably take a month or so, but he knows me too well and knows that I won't wait that long. I always e-mail Dr. Bove about 3 weeks out to find out what his line of thinking is on the situation. So, in the meantime, we wait and hope and pray............................as bad as the odds are, I am still holding out hope that her AV valve will just start behaving itself properly!

Will update when I know more, but again, thank y'all so much. I needed a boost! And please keep those prayers up. Take care, Janet

P.S. To Marsha - A local gal??? It's a small world! I moved to Arlington fairly recently - oh, say, about 39 or so years ago. heehee! My parents moved here from Midland, TX. And NE Dallas we know all too well, as my husband works on the other side of there. He works full-time for the National Guard, and the 1/112th Armored Battalion's armory is in Wylie. It is a long drawn-out story as to how we ended up in Michigan for Katie's surgeries, so I will give you the Reader's Digest version. Katie was transferred to Cook Children's shortly after birth (her heart defects were not diagnosed in utero - you would have thought they would have caught the dextrocardia???); she had her first surgery, and we spent 8 weeks there with one complication after another. She had her first cath at 3 months, and we started doing our homework and seeking out numerous surgical opinions with all of the big pediatric heart institutions. We were impressed with Dr. Bove at UofM, so Don and I flew up to meet with him. We were supposed to fly out Sept. 13th, 2001, but of course could not get a plane out. We finally got up there in October and that clinched it for us. We had Katie's second surgery there the following month. Then,of course, we just had our valve repair ??? last month and will be going back sometime in the near future for the fontan and, as much as I hate to say this, most likely a mechanical valve. It's not too bad; except for traveling expenses (we take Amtrak - Katie is not supposed to fly if at all possible) and hotel, it is about the same out of pocket expense on the medical portion. We are fortunate that both of our insurance companies permit us to do this. Dr. Bove is by far one of the best pediatric cardiothoracic heart surgeons in the world, and kids fly in from all over the world to have him perform their surgeries. Guess 1500 miles isn't so bad when you look at it that way. We are still followed at home by our local PC at Cook's, whom we dearly love. He has been Katie's PC since birth. Anyway, this is way more than you wanted to know, but it is nice talking to a local. TTYS, Janet

 

[MelissaM]

On Valve Repair

On Valve Repair

Janet,

What a brave daughter and mother! You have certainly been through a lot together. While the speed at which your daughter's repair is deteriorating is of concern, there are repairs that can show signs of improvement after a few months. I have been told that regurgitation and leaks can occur around suture holes the first few months, and gradually, as the heart heals, scar tissue forms to 'plug' these holes. This is what improves the overall rate of regurgitation. Perhaps this is what your Dr. was referencing.

My valve was at mild regurge after surgery, but six months post op went from mild to none.



Melissa

 

[Guest]

Wow! I'm actually at a loss for words (Believe me, this is rare for me. Right, Cort?And yes, it is I! How many other gijanets do you know? So this is where you have been hanging out.........still want to know how that echo of yours turns out)

Hey Janet,

First....you are welcome .

Second...at a loss for words? Doesn't look like it to me...LOL .

Third...Sweet...glad you joined us here! I _do_ read the posts at CHD, just don't add as much.... And, I know a few other Janets...just not "heart related"...lol.

Fourth...the echo is tomorrow morning, bright and early....

 

[gijanet]

Yes, this is exactly what I needed to hear!

Yes, this is exactly what I needed to hear!

Thank you so much, Melissa. This is exactly the type of story I was looking for. Thank you, thank you, thank you! I know deep in my heart that the odds of Katie's valve behavior duplicating yours are pretty slim, but, still, this is exactly what I needed to hear right now. For now, we can hope and pray, and, I guess, do a little bit of homework in the meantime, just in case! Thanks for sharing your story.


Cort, okay, maybe I wasn't at a total loss for words. I'm so behind - I don't think I have posted on the webring in over a week. It's the last week of school, and it is all I can do to keep from killing a couple of my students. Teenagers can be so obnoxious this time of year. How odd, since I am so full of love and patience the last week!!! Yeah, right! ANyway, hope everyone is doing well on there and will check back in soon. I will be looking for that echo update and hope and pray for a good one. Take care. Janet

 

[Sherry]

Hello again, Janet, I posted earlier but having just read your last post, I had to comment. Are you a junior high or high school teacher? I'm a h.s. teacher and have been trying to survive myself these last few weeks. (Senioritis ) Not that you would have much time considering what you're going through with Katie, but if you ever want to chat about teacher stuff, drop me a private message sometime. Take care.

 

[gijanet]

Sherry, me, too!

Sherry, me, too!

9th, 10th, and sometimes 11th grade.............I would love to chat sometime, but, for now, I have got to get back to grading some incredibly bad essays. (It's really good I don't have a gas oven. I am afraid I would be very tempted right now to take the easy way out!) I soooooooo hate the end of a grading period! Thanks for all of your support and talk to you soon.

 

[SJJ]

Janet,
A belated welcome! I've been on vacation and am slowly trying to play catch up. Katie is an absolute cutie! It breaks my heart to think of her being so vulnerable with all she's going through but I imagine she's just as resilient, determined and strong as her Mama seems to be. I don't have any experiences to relate, or information to add. I just wanted you to know that you've got one more person out there pulling for Katie. Keep connected with us. We're more than willing to walk with you on your journey.
Sue

 

[Sherry]

I can totally identify, Janet. I have to have all my grades in at noon today and am still working on getting grades on my sophomore personal essays. The end of the year is absolutely mind numbing, isn't it? Take care and drop me a note when you have time. I am in absolute awe of your juggling all your teaching responsibilities and taking care of your precious daughter.

 

[catwoman]

Janet:

Know what you're going through w/ grades. My husband teaches math @ Tarrant County College NW Campus -- went through grade reports 2 weeks ago. Always takes next 2 weeks off to recoup, then goes back to work all summer.
Have sent you a private e-mail w/ my numbers "in case."

 

[gijanet]

Quite a few teachers or SOOTs (sig. others of teachers)

Quite a few teachers or SOOTs (sig. others of teachers)

Wonder if the high stress (or living with someone who is highly stressed) has anything to do with heart disease. 'Course that doesn't really explain Katie's, but I have always wondered if her defects were somehow caused by the high stress I was under early in my pregnancy. I was teaching, playing soldier (weekend warrior - National Guard), and taking a graduate class...........hmmmm! Anyway, sounds like a research study in the making here...................

Thanks again for your support you guys (I'll spare you the y'all!)
P.S. Marsha, we will have to chat or get together sometime.