Heart Attack
We decided to schedule whatever available cardiologist they had today for Princess while we were in town seeing her surgeon.
Big mistake!
Despite the fact that she spent 3 MONTHS in th NICU at this hospital, the doctor did not have her records and ran his own tests. He basically told us she'd live 15-30 years and then need a heart transplant! He also said we should think hard before adopting her!
What kind of shit is that???
3 other cardiologists, the ones following her case said she had an AV canal which was temporarily fixed with a PA band and will be fixed in about 6 months when they operate on the inside of her heart. This condition is common in Down's Syndrome kids although Princess does not have Down's Syndrome.
I frantically searched for the cardiologist I spoke to(the one that adopted from Guatemala). He actually works at a different hospital, just like the other cardiologists I spoke too. I will be calling to make her another appointment so he can hopefully confirm what he told me in the first place, that she will be fine.
Also, this doctor changed all her meds and I am not changing until I speak to another cardiologist.
I can't get anymore info from the hospital now that she is released. I also can't get copies of the records, so it's probably gonna take an act of congress to get her records sent to another hospital to the cardiologist that saw her while she was in the NICU!
Please pray I find reassurance quickly from her good cardiologist, or at least talk to his nurse.
Good or bad, I just want to know the truth.
I should trust the cardiologist that followed her in the NICU right?
I'm so upset right now.
Big mistake!
Despite the fact that she spent 3 MONTHS in th NICU at this hospital, the doctor did not have her records and ran his own tests. He basically told us she'd live 15-30 years and then need a heart transplant! He also said we should think hard before adopting her!
What kind of shit is that???
3 other cardiologists, the ones following her case said she had an AV canal which was temporarily fixed with a PA band and will be fixed in about 6 months when they operate on the inside of her heart. This condition is common in Down's Syndrome kids although Princess does not have Down's Syndrome.
I frantically searched for the cardiologist I spoke to(the one that adopted from Guatemala). He actually works at a different hospital, just like the other cardiologists I spoke too. I will be calling to make her another appointment so he can hopefully confirm what he told me in the first place, that she will be fine.
Also, this doctor changed all her meds and I am not changing until I speak to another cardiologist.
I can't get anymore info from the hospital now that she is released. I also can't get copies of the records, so it's probably gonna take an act of congress to get her records sent to another hospital to the cardiologist that saw her while she was in the NICU!
Please pray I find reassurance quickly from her good cardiologist, or at least talk to his nurse.
Good or bad, I just want to know the truth.
I should trust the cardiologist that followed her in the NICU right?
I'm so upset right now.
posted by Lisa @ 5:19 PM
10 Comments:
At 5:43 PM,
Amanda said…
Goodness. I don't know what I'd do. I hope that you can get another opinion quickly, but I think in the meantime you should trust those who are most familiar with Priness and her case.
So sorry you're dealing with this.
At 7:46 PM,
TeamWinks said…
OH
My
Goodness!
That's a lot coming at you at once. I'll hope for an act of congress and quick!
At 7:53 PM,
Awesome Mom said…
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/avsd.htm
This is a link to a great article about AV canal defects and treatments. It sounds like the other cardiologist is making things sound much worse than they really are. At worst it seems like she will have the same operations that my son went through. I highly suggest joining a heart defect support group. CHD Families is the Yahoo group that I am in and there are a ton of great and smart parents in it. They will be able to give you a great idea of what you will be in for (which is honestly not all that bad in my book).
At 9:49 PM,
Runergirl said…
OMG Dream mommy, this is horrible news even if it isn't true. You need a second and third opinion in cases like this. If you need me to come down and watch Smiley it would be my pleasure while you take her to appointments. If you need anything, give me a call!
At 6:51 AM,
Baby Blues said…
He had no right to comment that "you should think hard before adopting her!" What was he thinking! These children aren't toys that you expect to return when you find something wrong with it. That's just cruel and upsetting.
At 7:53 AM,
queen said…
Wow so sorry you had to have that experience. Here's hoping he was just plain wrong. And what a rotten thing to say, on top of it.
Definitely get another opinion! Good luck!
At 8:06 AM,
Julie said…
Trust GOD- He will lead you to the right answers. Take a breath- and do get the info from the NICU doctor. Sometimes doctors just talk out of their booty. Hang in there! praying for you!
At 8:18 AM,
FosterMommy said…
Definitely wait on her original cardiologist. Doctors are trained to sound sure of themselves even when they're not....
Trust your instincts on this one. Princess is already a fighter, so whatever their predictions are, you know that she'll beat the odds.
And his comment about adopting her was WAAAAY out of line. I'd switch doctors just because of that!
At 9:07 AM,
GLouise said…
Oh sweetie. That is awful! What a JERK!!!
I can't believe you don't have access to her medical records!!! Raise he** til someone can help.
Thinking of you, praying that you will get some answers.
God is in control! I will pray that you receive some peace and calm while you are figuring out all of this medical stuff and seeking answers.
Hugs!
At 9:45 AM,
Lisa said…
Oh yeah, that comment on adopting...that was the first thing this doctor blurted out according to L!
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