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My 3 month old had surgery thursday for vsd repair. Yesterday he was off ventilater and pacemaker drinking his bottle. Today he wont eat and is lethargic. We have no idea whats happening. Has anyone heard of this.
Hi @lisbets, Welcome to Connect.
You must’ve been quite concerned yesterday. Did you talk to the nurses or doctor about your baby’s lethargy?
You may be interested in reading the comments alongside this webinar about Congenital Heart Disease https://connect.mayoclinic.org/discussion/webinar-topic-challenges-in-adult-congenital-heart-disease-what-the-patient-needs/
In the discussion comments you’ll find other Connect members @pattys @kelovich @nataliebushaw who had/have newborns and young children with heart disease. @judytru‘s daughter, for example, was born with coarctation of the aorta and aortic stenosis. She is now 26.
How is your baby doing today?
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Thank you for mentioning us in your email. Both Amy and I know very well
what going through Congenital Heart Disease is like. I also copied my
daughter, Amy on this email in case anyone has any questions for her.
Please know that Amy is now 27 years old and she just had her 5th open
heart surgery last year. She had the surgery at Shands in Gainesville, FL
and Dr. Bleiweiss performed the surgery. Dr. Bleiweiss used a mechanical
aortic valve this time, rather than a repair since the repair she had the
year before did not take. The main issue she is having since the surgery
now, is Coumadin, the blood thinner. This drug is very hard to deal with.
Her levels are supposed to remain at a certain level and they most always
are not ever level! She has to watch everything she eats as anyone taking
Coumadin is not allowed to have certain foods containing Vitamin K. Vitamin
K is what clots the blood and obviously defeats the purpose of the blood
thinner. Everything seems to have Vitamin K in it! Even though a repair
would have meant another future surgery, I think Amy would have been much
better off not having to deal with taking Coumadin for the rest of her
life. It’s really tough!
I wish everyone the best of luck and please know that Amy and I both are
here in case anyone has any questions for us.
Welcome back @judytru. Thank you to both you and Amy for being so willing to share your experience. Sharing lived experience is so valuable, and really helps people who are walking similar roads.
Will Amy have to take Coumadin for the rest of her life or could she take a different blood thinner that isn’t affected by vitamin K?
It is my understanding that she will have to take it the rest of her life.
She is evidently not a candidate for any other type of blood thinner. It’s
such a shame because she chose the “Onx” (sp?) valve because we were told
that it was showing promise in that after a few years, it would not be
necessary to continue any blood thinner! Since she has had that valve put
in, their clinical trials have stumbled a bit in that the results of
patient subjects going off of their blood thinners were not good.
We, of course, keep up with the latest news because we never know when this
might change with new improvements and/or studies.
My boy of 3 months has a large VSD (10mm) with complications like severe pneumonia & heart failure admitted in the hospital for last 1 month..At his age of 3 months there is no complications or other symptoms..Now his pneumonia is out of control..what can I do in this situation and what will be the. treatment plan please?
Welcome to Connect, @homyra. I can only imagine your worry, and sincerely apologize for the delay in replying. I moved your discussion, and combined it with this existing discussion on ventricular septal defect (VSD) as I thought it would be beneficial for you to be introduced to other members who have discussed much of what you are experiencing.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the earlier messages and meet some of our other members talking about their or their loved ones' experiences.
I'd like to introduce you to @lizbets @pattys @hannahfgibson @khenry55904 @grward @kelovich @nataliebushaw who had/have newborns and young children with heart disease. @judytru‘s daughter, for example, was born with coarctation of the aorta and aortic stenosis. She is now 27.
I encourage you to also view these video Q&As about congenital heart disease, on Connect:
@homyra, how is your baby boy doing today?
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