Comments on: March 3. 2009: Cardiology Appointment http://fourtran.com/2009/03/06/march-3-2009-cardiology-appointment/ (actually, three Trans and a Cao) Thu, 09 Sep 2010 13:53:32 +0000 http://wordpress.org/?v=2.7.1 hourly 1 By: Susan in PA http://fourtran.com/2009/03/06/march-3-2009-cardiology-appointment/comment-page-1/#comment-3623 Susan in PA Sat, 07 Mar 2009 03:41:49 +0000 http://fourtran.com/?p=402#comment-3623 oops! note corrected blog address. oops! note corrected blog address.

]]> By: Susan in PA http://fourtran.com/2009/03/06/march-3-2009-cardiology-appointment/comment-page-1/#comment-3622 Susan in PA Sat, 07 Mar 2009 03:39:46 +0000 http://fourtran.com/?p=402#comment-3622 Dear Jennifer, I am guilty of not following your blog since Justin's last surgery. Forgive me. Nikki put out the prayer request...I was in the church choir led by Daniel and Nikki before I moved to PA and they moved to NC. I have 4 grown children (one boy and 3 girls). One of the girls came up through special ed. I lost a child to miscarriage in the middle of this mix. So Nikki hears from me every time she has a worry. My son Tom is 28 and still in California, and yes, I am still concerned for his welfare. But I have to leave that in God's hands, and trust that I raised Tom right. There is no retirement from being "Mom". :) Because of my leg injury/"dis"ability, I am taking computer training to be a certified medical administrative assistant. One of my requirements is an online medical vocabulary course..so if anyone throws a big word at you feel free to ask me for some help. All the sciences have their own babbling lingo - one word has to be rendered in plain English by one or more sentences. :P PS. I just googled 'heterotaxy' and found a comment from an 18 year old male with the condition. Something to give you hope Justin could live that long. Dear Jennifer, I am guilty of not following your blog since Justin’s last surgery. Forgive me. Nikki put out the prayer request…I was in the church choir led by Daniel and Nikki before I moved to PA and they moved to NC. I have 4 grown children (one boy and 3 girls). One of the girls came up through special ed. I lost a child to miscarriage in the middle of this mix. So Nikki hears from me every time she has a worry.

My son Tom is 28 and still in California, and yes, I am still concerned for his welfare. But I have to leave that in God’s hands, and trust that I raised Tom right. There is no retirement from being “Mom”. :)

Because of my leg injury/”dis”ability, I am taking computer training to be a certified medical administrative assistant. One of my requirements is an online medical vocabulary course..so if anyone throws a big word at you feel free to ask me for some help. All the sciences have their own babbling lingo - one word has to be rendered in plain English by one or more sentences. :P

PS. I just googled ‘heterotaxy’ and found a comment from an 18 year old male with the condition. Something to give you hope Justin could live that long.

]]> By: Melissa http://fourtran.com/2009/03/06/march-3-2009-cardiology-appointment/comment-page-1/#comment-3621 Melissa Fri, 06 Mar 2009 17:58:59 +0000 http://fourtran.com/?p=402#comment-3621 Oh my gosh, I can't imagine what I would have said to a doctor who told me that the literature was "too technical" for me to understand. Grr. I would have wanted to try anyway. I'm glad to hear that things are looking good for Justin, except for weight-wise, and will continue to keep you all in my thoughts. Your strength and love for your family are very obvious in your blog, try not to let the worries get you. :) Oh my gosh, I can’t imagine what I would have said to a doctor who told me that the literature was “too technical” for me to understand. Grr. I would have wanted to try anyway.

I’m glad to hear that things are looking good for Justin, except for weight-wise, and will continue to keep you all in my thoughts. Your strength and love for your family are very obvious in your blog, try not to let the worries get you. :)

]]> By: Nikki http://fourtran.com/2009/03/06/march-3-2009-cardiology-appointment/comment-page-1/#comment-3620 Nikki Fri, 06 Mar 2009 16:46:08 +0000 http://fourtran.com/?p=402#comment-3620 I worry so much about much smaller things that it is hard for me to imagine how devastating it would be to have such big worries about my child. I struggle all the time with trying to have faith sufficient for the day and accepting my own limitations, and those of my doctor, in my own fairly normal situation. I guess I am saying that I do understand worry and expecting more from doctors - I think it goes hand-in-hand with reading and wanting to do everything possible to find and treat whatever problems may potentially exist. On the other hand, I don't understand... except to say that I'll pray that you will find the support you need from the medical community and the strength in your faith in the Great Physician not to give in to feelings of despair or defeat. I worry so much about much smaller things that it is hard for me to imagine how devastating it would be to have such big worries about my child. I struggle all the time with trying to have faith sufficient for the day and accepting my own limitations, and those of my doctor, in my own fairly normal situation. I guess I am saying that I do understand worry and expecting more from doctors - I think it goes hand-in-hand with reading and wanting to do everything possible to find and treat whatever problems may potentially exist. On the other hand, I don’t understand… except to say that I’ll pray that you will find the support you need from the medical community and the strength in your faith in the Great Physician not to give in to feelings of despair or defeat.

]]> By: Alvin J. Chin MD http://fourtran.com/2009/03/06/march-3-2009-cardiology-appointment/comment-page-1/#comment-3619 Alvin J. Chin MD Fri, 06 Mar 2009 15:42:07 +0000 http://fourtran.com/?p=402#comment-3619 I'm a pediatric cardiologist, and ordinarily I don't respond to personal medical blogs; however, our Division Chief actually asked us to start doing so. Heterotaxy is complicated (I've worked on it for more than a decade), but like anything else it's a solvable problem. One has only to deploy sufficient resources. The long-term sequelae of the Fontan surgical palliation are many, but a number of academic centers have begun a collaboration to characterize them in more detail, develop working hypotheses about why they happen, and formulate strategies to improve quality of life and length of life. Depending on where you live, you may be within easy reach of one of these centers. I’m a pediatric cardiologist, and ordinarily I don’t respond to personal medical blogs; however, our Division Chief actually asked us to start doing so.

Heterotaxy is complicated (I’ve worked on it for more than a decade), but like anything else it’s a solvable problem. One has only to deploy sufficient resources. The long-term sequelae of the Fontan surgical palliation are many, but a number of academic centers have begun a collaboration to characterize them in more detail, develop working hypotheses about why they happen, and formulate strategies to improve quality of life and length of life.

Depending on where you live, you may be within easy reach of one of these centers.

]]> By: Megan http://fourtran.com/2009/03/06/march-3-2009-cardiology-appointment/comment-page-1/#comment-3618 Megan Fri, 06 Mar 2009 14:12:51 +0000 http://fourtran.com/?p=402#comment-3618 Sometimes I wish I could hire someone to do my worrying for me. Wouldn't that be nice? They could handle the burden and all I'd have to do is lovingly take care of my little boy as best as I possibly can. And then I remember....oh wait! I can do that! I can hand my worries straight to God. He wants me to do that. And I can love Elijah with all my heart. I have times where I'm good with this, and times when I'm not. In the midst of the hard times, I try to remind myself of it often. I don't have to carry this burden! I can hand it to someone else! How cool is that. Now if only I were able to do this more often than not... I'm so sorry for your worries. :( We will say some special prayers for peace for you. Hug that sweet boy up a little extra for me! oxoxo Sometimes I wish I could hire someone to do my worrying for me. Wouldn’t that be nice? They could handle the burden and all I’d have to do is lovingly take care of my little boy as best as I possibly can. And then I remember….oh wait! I can do that! I can hand my worries straight to God. He wants me to do that. And I can love Elijah with all my heart.

I have times where I’m good with this, and times when I’m not. In the midst of the hard times, I try to remind myself of it often. I don’t have to carry this burden! I can hand it to someone else! How cool is that. Now if only I were able to do this more often than not…

I’m so sorry for your worries. :( We will say some special prayers for peace for you. Hug that sweet boy up a little extra for me! oxoxo

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