...it's another.
Today was Drew's 2nd post op follow up. The report on his heart was favorable, although he does have some mild narrowing in his main pulmonary artery, at the repair site. The stenosis is in the mild range and the pressure of the blood flow (because I can't remember the correct term right now) is at 20. To give you a frame of reference, before Drew's OHS, it was at a 60. Someone without PS would be at a 12, if it even registered. So, very mild. Dr. Cutler wants to see him back right before his 2nd birthday, so one year, to give his heart time to grow and see how the stenosis does. She feels that, if he needs anything further, another balloon valvuloplasty will take care of the issue since it's in the repaired site and there is patch material in there now. She is hopeful he will not need anything in the future, but it's a waiting game at this point.
The other issue is this - because his last 3 EKGs have shown he has something called "left axis deviation," when this was not present before, and because his CHD was Supravalvar PS, with ASD, she wants him to see a geneticist to be tested for Noonan's Syndrome. You can find out more about Noonan's Syndrome here:
http://www.mayoclinic.com/health/noonan-syndrome/DS00857
So, I will be making an appt with the Pediatric Geneticist at Beaumont shortly, because I hate waiting. He isn't exhibiting any symptoms of Noonan's, except his CHD and the issue with his EKG showing the left axis deviation. But, I would be lying if I said I wasn't a bit upset and very disappointed in this news. I did not walk into today's appointment with any false hopes about his heart, I knew that there was always the possibility the stenosis could creep back in, but I am really disappointed that it might be truly a genetic issue. This puts his children at greater risk, if it's found in one of us, as well as our own future children, for having this syndrome AND CHDs. We will have to wait and see what Dr. Aughton has to say. Please pray for us to accept what we cannot change. I try to remember the Serenity Prayer, and it's hard. He's my beautiful baby...it's hard to think that something may be genetically wrong with him.
15 years later
1 year ago
6 comments:
Auw Mary, I am so sorry! You must remember one thing...you had absolutely NOTHING to do with the genetics, it is nothing you can control. I studied human genetics as an undergrad and contemplated genetic counseling for a career. The chances they list on the website you gave mean that this is a very common inherited trait.
Now, don't get too worked up yet until you see the next doctor... he may not even have this, your current doctor may be trying to cover all his bases (which makes him a good doctor). Just take it day by day. Ok?
So many hugs my dear!!!
Thank you Rachelle! I am glad to get your perspective, as you have studied genetics.
I am working on not freaking out, because you're right that we know nothing at this point, other than Dr. Cutler suspects he may have Noonan Syndrome. Still, in my experience with her, she's been right on with everything for the most part, even where the PS was located when the interventional cardiologist (cath guy) said it was in the valve, she knew it was above the valve. So, we shall see. *sigh*
hi Mary,
I'm from babycenter and replied to your post on the CHD board. NS can be inherited or be a spont. case. In my case, it is hereditary and was a complete shock when we found out. I have 2 children and don't plan on having anymore. Since having the gene and my children have the same gene they will have a 50% chance of passing it on to their children and so would I if we would have a 3rd(which we aren't) since we are happy with the 2 we have.
I don't see this genetic condition being a death sentence because it is not! "Remember, an alphabet does not make a child. Your child is your child, a diagnosis does not change who they are, just points you to places where you might learn more about your child."
Ah yes, Katie...I know you! I know it's not a death sentence, I think I am just REALLY overwhelmed right now. It's hard for me to wrap my head around it just because he doesn't look or act like he has it. But, he may. And if he does, well, we'll deal with it. Thank you for posting here and on BBC!
Ah Mary,
Your family continues to be in my prayers. I cannot even imagine the stress both you and Bill are under. I cant imagine being told my child was going through these things. I agree that freaking out is not going to help the situation, although I know how easy it is to do. Stand strong and remember that the Lord walks with us always, through everything he is still with us.
Oh goodness. I'm sorry to hear about the other findings. I'll reciprocate Rachelle by saying please don't get too worked up until you further this with the other doctor. My husband always reminds me that sometimes we (as all human tend to do) tend to worry about things that may not even happen. You're in my prayers always. I pray for better news for your Drew. Thanks for the update. You need {{{{{{{{{big hugs}}}}}}}}
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