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doubletroublex2

Well-known member
Joined
Apr 18, 2006
Messages
68
Location
MN
Hello I'm here because Keegansmom02 sent me here from baby center. Although they are wonderful and all, I'm finding that this might be a great fit for my situation. See my 5 year old son will be having his mitral valve replaced on the 17 of May. (not that it has ever happened on the first try yet!) Any way this will be his third surgery and the first that he will really remember and can truely know what is going on. I'm so afraid that I will not be able to keep myself together. I keep hoping and praying that everything will go well. Each surgery he has been very quick to recover, how many times can we get lucky? Here is my kiddos history.

Caleb has a partial AV Canal and no downs syndrome. He was diagnosed at 5 days old. His pc didn?t think he would need surgery until 3-4 years of age. Well, he needed it earlier than expected. Caleb would only eat 1-3 ounces a day at about 3 month?s old and never got over 10 lbs until they had postponed surgery because he was too little. Then they put in a NG tube and got him up to 11 lbs at four month?s old and surgery was on. His first surgery lasted about 7 hours and they repaired his mitral valve, tricuspid valve and an ASD (his VSD had closed on its own, and reopened after surgery but again closed). At about 2 years 2 months old, I noticed that he was again turning blue so brought him in to see his pc and he kept telling me ?it?s normal, he?s a heart baby?. I knew my child better than anyone so went for a second opinion, and did a sedated echo to find out that, he needed a mitral valve replacement. I didn?t like the sound of that so I took this information back to my original surgeon and he agree that Caleb would need a second surgery, but he felt that he could repair the valve. Therefore, we went ahead with the surgery. This surgery lasted 9 hours and they repaired his mitral valve, and removed a sub-aortic membrane. After this they had really hoped that this would be the last or at least get him into his adulthood. Well now it's only three years later and now the only thing to be done is a MVR.

I have so much pitty for this child, it's starting to carry over to my other children. I know that he will adjust to life and may never miss the things he "can't do" (he loves soccer and so does his twin sister). I'm finding myself telling her no just so I don't have to tell Caleb no. This is not fair to either one of them.

Any way for now I will stop rambling I tend to get away from myself. It's just I have so many question.

Jamie:eek:
 
Hugs and welcome!

Hugs and welcome!

So sorry that you have to be here, but you have come to the right place. This group is wonderful - a wealth of info and very supportive.

My daughter is also five and a half and has now had five surgeries. We also sadly had a repair go south on us. We found out one month post-op. I was a wreck, but that is when I stumbled upon this group. The ped heart groups just don't have many kids with prosthetic valves, so this group was a Godsend. BTW, Katie has a complete AVSD as one of her many defects, and she doesn't have Down syndrome, either.

I am grateful that your son's repair was able to buy him three years without a replacement. I know you would have liked much longer, but valve repairs in kids just don't seem to last as long as they usually do with adults. But this bought you three years of growing time and coumadin-free time. Let me say this, though, the coumadin has not been nearly as bad as I feared. Yes, we still have some occasional erratic INRs with stomach bugs and the occasional scares with falls (head hits mainly and always late at night; that's when I put out my battlecry to this group), but overall, Katie is tolerating it well and doing incredibly well heart-wise (knock on wood). We now have oxygen sats of 97-99, which we had never seen before, and she is a bundle of energy.

As far as your other children and you and your husband, yes, this has taken a toll, and this next surgery will, too. I felt so guilty leaving my son yet again for a month last summer, but it couldn't be helped. I have tried talking to him and I hope one day that he will truly understand. He says he does now, but I think that is just to shut me up so he can get back to playing Halo 2 or something. :D This will all be behind you soon, and hopefully, y'all can attempt to have a "normal" life - granted, not quite the normal that families with completely healthy kids have, but still some semblance of normalcy. It's funny, but this is the first time in our lives we have not had a surgery looming over our heads............and I don't know what to do with myself. We have made no plans for this summer or anything.........it seems like we have always been racing around trying to go do some quality family thing before surgeries or get additional opinions or just sit around and wait for the next shoe to drop................. so now we don't know what to do to be "normal." :D

Now, do you feel comfortable with your surgeon? HOw's that repaired tricuspid valve holding up? I would definitely have that double-checked. You don't want to have your son's mitral valve replaced only to turn around and find out that the tricuspid has to be replaced, too. You want this to be your son's last surgery for a long, long time.

Many hugs. Feel free to vent and scream and ask any questions that you might have. There will be some other moms of valve kids along soon to welcome you. P.S. I was a wreck, too, before Katie's last surgery(ies). Just ask this group.heehee!
 
P.s.

P.s.

We didn't tell Katie about her last surgery until we started packing to go to Michigan. I couldn't see telling her any sooner. There are also some great kids heart surgery books out there. Let me know if you are interested and I will get you the titles. One, off the top of my head, is Matty's Heart. There is also a Matty's Cath coloring book. These came in really handy when it came time to NPO, etc. ( Remember, Katie, we read about that in Matty's Heart.)Also, we showed Katie some of her previous heart surgery pictures. WE did not show her any graphic ones, mainly the ones that showed the machines and lots of the playroom. We really tried to play the playroom up and she remembered that most of all from her surgery the year earlier. We did show her a picture on the vent, so she would know what that was. That turned out to be a blessing, too, as she was on the vent three days and woke up several times. I think this made it a little bit less frightening to her.........at least I hope it did. Hard to tell when they are so doped up.)

You can also contact the child life folks at the hospital and they can give your whole family a tour of the ICU, etc. They are a great asset and may have some more ideas. They do deal with this all of the time. More hugs. Janet
 
Gosh, I am a wreck just hearing your story! I can't imagine how hard it would be to see your little kid go through so many surgeries and that goes for Katie's mom too. I just want to cry for you. I have a five year old girl and I can't imagine how scared I would be before a major surgery like that. I will keep you in my prayers and please feel free to vent any time. Good luck and God Bless --Janea
 
Hi,
Very sorry for you and you young child, I hope things go well again this time and that you have support from friends and family. Read your post and as a parent I just wanted to respond.
JD
 
Jamie,
I just wanted to say "welcome". I am the heart patient, thankfully. I'd much rather be the one than either of my children. We have some very strong heart Moms here who know first hand what you are feeling. There's someone around here 24 hours a day, so if you feel you are in need of some reassuance just pop on.
 
Hi and Welcome

Hi and Welcome

I know you'll find numerous people here that can offer tons of support. I share several of your concerns as well. Although my son doesn't have the valve problems that your son does, we are getting ready for our son's 3rd OHS and he'll be having it done just before he turns 3. His first two were done at 4 weeks and 5 months. Although they were stil tough on him - he was still too little to understand everything going on. As we approach the cath and 3rd surgery I do worry so much about what I can tell him to help prepare him and exactly what he'll even understand.

We didn't know he even had a heart defect until he was a week old. Then it was a whirlwind of things going on getting ready for that 1st surgery. Just so you'll know, he as single vent, ASD, VSD, tricuspid artresia (I think it's techinically tricuspid since his ventricles are inverted) and then to boot after his first surgery, (or maybe it was there before and was undetected until then) he has arhythmia problems as well.

So, anyway, you're not alone and we're here for you. Ask questions whenever you need to -- as Janet said -- lots of great people here with tons of info. Also, make sure you feel comfortable with everything that's going on. We've been very lucky to have a pc that keeps us in the loop with everything going on and if we have any questions she's always there. Best of luck and keep in touch.
 
Jamie,
I think you've found a good group to be with. We've gone through Katie's surgery with Janet, so I guess we're strong enough to go through anything with anyone;) ;) I'm adding Caleb to our surgery calendar, and I'll keep him in my nightly prayers, so we'll have a stockpile by May 17th.:)
 
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