I'm still trying hard to understand Cole's heart. I 'thought' I understood it 13 years ago. I just can't believe what was explained to me was not really the whole story. Our family doc is getting his full records so he can help explain things to me since the pediatric cardiologist is 2 hours from us. I can't just pop in for an appointment and getting them on the phone has been near to impossible. I just have generic questions, but since I can't see the post op to know exactly what was in there I can't ask those questions very well.
The PC said he has a goretex (PFTE) monocusp. The NP (that works for the PC) said the documentation they have says transannular patch with monocusp. I'm not totally understanding if they both actually mean the same thing or not. I understand what the patch is, but I don't know if they replaced his valve, patched over his valve or if it was never there. Since no one ever said atresia, I'm guessing it was there, just maybe damaged? After all my googling it looks like standard procedure for a standard tetralogy case is to do what they told me they'd be doing. They'd patch the holes between the ventricles (he had 2)...at least that's what I was told 13 years ago...who knows now...I'll check for that too. Then they take out the muscle build up around the valve that is narrowing causing the stenosis.
When Cole was in surgery they called us in the waiting room to tell us they thought they had finished, but had to put him back on bypass because his pressures were still too high. They never explained what they did in that time, but the new PC's office says that's when the patch was put in place. Makes sense. But, why never tell us? From what I understand, if reducing muscle is not enough that's when the patches are put on. However, withing the first 20 years another surgery is always required and it's to replace the valve completely. So even if they spared his valve it will be replaced. The information I found shows that usually about 10 years out is when the leakage is too much. Most kids are good until then, depending on their specific circumstances. So, I guess if we make it 13+ years we're doing good? Just wish we had known.
So, we'll have another appointment next Spring and do the full run of tests including, xray, EKG, echo, MRI and stress test. Then, we're hoping they'll have a better idea of how well his heart is handling things, how much enlargement there is on the right side and when the surgery is coming. For now, his xray confirmed his echo and he should do okay to next year. Can't say I'm not still nervous, because for the first time in 13 years I am.
I'm trusting God. I just remind myself of that and I feel better for a bit.
Lisa
Sunday, August 1, 2010
Thursday, July 29, 2010
Another baby boy!!
Congrats Tom and Nic on your first baby boy William. I noticed you finally got to use that chosen name. So it looks like we kept up the family tradition. You have my middle name as your first and your son has my son's middle name as his first. Cool!
Lisa
Lisa
Wednesday, July 28, 2010
Public vs. Private Behavior
Do you ever wonder about people's behaviors? I mean if someone's openly mean, how mean are they at home? I mean I feel like I can be a grouch sometimes, but when people are just commonly like that in public (and we're usually more comfortable with our behaviors at home) how bad is it at home?
At swim lessons tonight there was a lady that had her grandkids there. I know because I heard one of them call her nana. Anyways, They were probably about some of my kids' ages. I'd say 13, 8, 5 and 3ish on all of them. The 13 yo was a junior lifeguard and was helping the lifeguards teach. The 8 year old just finished her class before ours started and the other two didn't have class at all. As soon as I got there grandma and 13 yo were fighting. One apparently wanted to go home and then they just got into a stubborn match and the grandma kept yelling at her to shut up. The 3 year old was being so patient and being pretty well-behaved for his age but she ended up yelling at him too. He was tearing at one point, but wouldn't cry out lout, poor little guy. Grandma pulled out some medications for the 8 and 5 yos to take and was yelling at them to shut up because they were trying to tell her how much they had to take and she was trying to read whatever their mother wrote. Apparently, one or both were supposed to get 1/2 and she couldn't break them. So she proceeded to yell 'you mom is full of f**ing sh*t'. I got so tired of listening to it I had to go to the opposite side of the pool to watch the big kids for a bit. I couldn't take it anymore.
I came back to my spot to watch Chelsi and smiled at the little boy sitting behind me and he just quietly smiled back. I was relieved that she was the grandma and not the mother and hopefully they're not with her often by the way she treats them. I've never heard shut up so many times in my life. They really were pretty well-behaved little kids. Especially, the two youngest. I don't think my kids would have ever sat that still that long.
I guess some people still surprise me.
At swim lessons tonight there was a lady that had her grandkids there. I know because I heard one of them call her nana. Anyways, They were probably about some of my kids' ages. I'd say 13, 8, 5 and 3ish on all of them. The 13 yo was a junior lifeguard and was helping the lifeguards teach. The 8 year old just finished her class before ours started and the other two didn't have class at all. As soon as I got there grandma and 13 yo were fighting. One apparently wanted to go home and then they just got into a stubborn match and the grandma kept yelling at her to shut up. The 3 year old was being so patient and being pretty well-behaved for his age but she ended up yelling at him too. He was tearing at one point, but wouldn't cry out lout, poor little guy. Grandma pulled out some medications for the 8 and 5 yos to take and was yelling at them to shut up because they were trying to tell her how much they had to take and she was trying to read whatever their mother wrote. Apparently, one or both were supposed to get 1/2 and she couldn't break them. So she proceeded to yell 'you mom is full of f**ing sh*t'. I got so tired of listening to it I had to go to the opposite side of the pool to watch the big kids for a bit. I couldn't take it anymore.
I came back to my spot to watch Chelsi and smiled at the little boy sitting behind me and he just quietly smiled back. I was relieved that she was the grandma and not the mother and hopefully they're not with her often by the way she treats them. I've never heard shut up so many times in my life. They really were pretty well-behaved little kids. Especially, the two youngest. I don't think my kids would have ever sat that still that long.
I guess some people still surprise me.
Tuesday, July 27, 2010
Money brings out the ugly in so many
I understand being mad and frustrated...totally. But completely being indecent and rude is just not okay. Nothing makes someone more low class than to be constantly in judgment of others while singing the praises of yourself.
If you read our local newspaper there's a particular topic that has hit the hot buttons of so many here. And it pertains to money....imagine that. The thing I just don't get is the constant ridicule. There's one particular person who is judging someone else there because she doesn't make much money and is upset about a loss in partial pay because she, alone, is raising her two children and cannot get the child support she needs to help her. I don't know her, so I don't pretend to know if she's telling the truth or not, but she doesn't have a crazy, ridiculous story and isn't really putting anyone else down just venting about her particular circumstances. So I have no reason not to believe she is in those circumstances. The other person there is preaching to her that she should have bettered herself and pulled herself out of that job into better pay, etc. She is making sure that all people who read those comments are well aware of her view that her money is not making much interest because of the middle class citizens wanting to be like the upper class and living beyond their means. She has touted herself as coming from a poor family, enduring child abuse and working to get an education completely by herself and being completely self sufficient.
Again, I don't know this person, so could be a real story, could be fake...who knows...who cares. The point is that she's so blinded by her own pride in herself that she thinks everyone can and is awarded the same opportunities and should make the same choices as herself. I get the impression that she has no children as she doesn't seem particularly sympathetic of those with and is touting her and her spouses ability to just have love. Seems a little contradictory. Maybe the single mother was happy to be just paying her bills and have the love of her two children? Why should money be the be all end all? Does money make some differences...of course. I'm not naive. And I take offense to the statement that it's not the upperclass or poor putting us all in this situation. It's everyone in every class. You'll find citizens in every class wanting more. Isn't that the American dream? I guess for some anyways.
We're perfect middle class examples. I think there are too many blames to lay for this crisis and don't even want to try to pinpoint it right now. But, responsibility in ourselves would be a #1 for all to follow. We don't live beyond our means. We have a home loan....not bad on our income with 5 kids. We chose to adopt and have more children over living the typical American dream or socking all of our money away for a rainy day that may never come. We always knew we would never regret our children, but would regret not having them. Other than paying for the adoptions and paying our bills after we added each of our children, money was not a major consideration. I have to say with my $200/month paycut coming in January due to this massive change and the possibility (quite possible I'm afraid to actually say here) the kids are the best thing I come home to (and of course my husband) and they make me feel better. I don't feel empty knowing we won't be able to stay in budget any longer and have no room to move anything out of our budget. I feel full when I walk in the door to a little boy that lights up and yell's "mommy" the second I enter. That's better than anything. I'm ticked at the changes and I'm scared to death, but I have my family and they truly are what I need.
Considering this is coming from a HUGE budget freak that has always worried about money and preparing for the future this is big. I can honestly say that I will do what we need to do to pay what we can when the time comes and still get the medical care our kids need, but THEY make everything okay. THEY make my life worth it and I feel for those that don't get to feel this euphoria of love. Such as this poor lady commenting in the paper. Prayers for her please. I feel she needs them.
If you read our local newspaper there's a particular topic that has hit the hot buttons of so many here. And it pertains to money....imagine that. The thing I just don't get is the constant ridicule. There's one particular person who is judging someone else there because she doesn't make much money and is upset about a loss in partial pay because she, alone, is raising her two children and cannot get the child support she needs to help her. I don't know her, so I don't pretend to know if she's telling the truth or not, but she doesn't have a crazy, ridiculous story and isn't really putting anyone else down just venting about her particular circumstances. So I have no reason not to believe she is in those circumstances. The other person there is preaching to her that she should have bettered herself and pulled herself out of that job into better pay, etc. She is making sure that all people who read those comments are well aware of her view that her money is not making much interest because of the middle class citizens wanting to be like the upper class and living beyond their means. She has touted herself as coming from a poor family, enduring child abuse and working to get an education completely by herself and being completely self sufficient.
Again, I don't know this person, so could be a real story, could be fake...who knows...who cares. The point is that she's so blinded by her own pride in herself that she thinks everyone can and is awarded the same opportunities and should make the same choices as herself. I get the impression that she has no children as she doesn't seem particularly sympathetic of those with and is touting her and her spouses ability to just have love. Seems a little contradictory. Maybe the single mother was happy to be just paying her bills and have the love of her two children? Why should money be the be all end all? Does money make some differences...of course. I'm not naive. And I take offense to the statement that it's not the upperclass or poor putting us all in this situation. It's everyone in every class. You'll find citizens in every class wanting more. Isn't that the American dream? I guess for some anyways.
We're perfect middle class examples. I think there are too many blames to lay for this crisis and don't even want to try to pinpoint it right now. But, responsibility in ourselves would be a #1 for all to follow. We don't live beyond our means. We have a home loan....not bad on our income with 5 kids. We chose to adopt and have more children over living the typical American dream or socking all of our money away for a rainy day that may never come. We always knew we would never regret our children, but would regret not having them. Other than paying for the adoptions and paying our bills after we added each of our children, money was not a major consideration. I have to say with my $200/month paycut coming in January due to this massive change and the possibility (quite possible I'm afraid to actually say here) the kids are the best thing I come home to (and of course my husband) and they make me feel better. I don't feel empty knowing we won't be able to stay in budget any longer and have no room to move anything out of our budget. I feel full when I walk in the door to a little boy that lights up and yell's "mommy" the second I enter. That's better than anything. I'm ticked at the changes and I'm scared to death, but I have my family and they truly are what I need.
Considering this is coming from a HUGE budget freak that has always worried about money and preparing for the future this is big. I can honestly say that I will do what we need to do to pay what we can when the time comes and still get the medical care our kids need, but THEY make everything okay. THEY make my life worth it and I feel for those that don't get to feel this euphoria of love. Such as this poor lady commenting in the paper. Prayers for her please. I feel she needs them.
Sunday, July 25, 2010
**Super cute**
I don't know when I'll get anymore nieces or nephews on my side (I finally have 1), so I love to look at this little one even if only by email pics. Here's my little nephew....so cute...I love sleep pictures. Look how snuggly he looks. :)
Anxiety? Probably
For the 2nd night in a row I've had horrible dreams. I don't even want to outright type what they're about. And I won't. It's too scary. I know it has to be related to Cole's news. I can't believe it's bothering me this bad. I usually don't get so rocked like that. Yeah, I might let go of a tear or two, but rarely does it hit me to the extent of dreams. Hopefully, I get to have a conversation with the nurse practitioner tomorrow and questions get answered and maybe my subconscious can rest.
I hope.
I hope.
Friday, July 23, 2010
Children Center
Do you ever wonder if your children center you a bit? I think they do. They make me feel that way sometimes.
While, at work, I freaked a bit at the prospect of my $200-300 paycut in January and still figuring out the details of Cole's heart issues I can be free at home. For some reason, after Cole's appointment tonight I just feel okay. Okay enough anyways. He and I have had some nice conversations yesterday and today about life, which is nice to have with your 13 year old. I told him how much I believe that God will take care of us. And I meant it. I didn't say it so he wouldn't be scared. He probably still would be anyways. I told him I still am scared, but not for that. I'm more worried about him and how he feels. I told him how much easier it was to watch him have open-heart as an infant as opposed to now that he's old enough to be scared and I can't do anything about it. I asked him to place his trust in God. The same way we did when we leaped in faith for Jaemin. He told me how happy he was that we did that. I told him God doesn't steer you wrong...only you do that to yourself. He seems a little better now. So, he's done with his xray and we'll talk to them again next week to discuss more of the details of how we went from 0-180 just like that. I'm hoping for things to make a little more sense next week and then I'll be better yet.
But, as I checked on them all, sleeping in their beds, before I headed to bed tonight I felt so calm and peaceful. Every single night I'm reminded of how lucky I am.
Lisa
While, at work, I freaked a bit at the prospect of my $200-300 paycut in January and still figuring out the details of Cole's heart issues I can be free at home. For some reason, after Cole's appointment tonight I just feel okay. Okay enough anyways. He and I have had some nice conversations yesterday and today about life, which is nice to have with your 13 year old. I told him how much I believe that God will take care of us. And I meant it. I didn't say it so he wouldn't be scared. He probably still would be anyways. I told him I still am scared, but not for that. I'm more worried about him and how he feels. I told him how much easier it was to watch him have open-heart as an infant as opposed to now that he's old enough to be scared and I can't do anything about it. I asked him to place his trust in God. The same way we did when we leaped in faith for Jaemin. He told me how happy he was that we did that. I told him God doesn't steer you wrong...only you do that to yourself. He seems a little better now. So, he's done with his xray and we'll talk to them again next week to discuss more of the details of how we went from 0-180 just like that. I'm hoping for things to make a little more sense next week and then I'll be better yet.
But, as I checked on them all, sleeping in their beds, before I headed to bed tonight I felt so calm and peaceful. Every single night I'm reminded of how lucky I am.
Lisa
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