Which is an obscure way for me to say - we have 3 second opinions. AND they all agree on a basic plan of action. Per one of the doctors, this is a miracle in itself.
The basic plan is to band the pulmonary arteries to protect the lungs from further damage from the high pressures they are currently experiencing. Then repair the interrupted aortic arch (this gives them a much better ability to really measure what is happening with her blood flow and with her lungs- apparently the current setup makes it hard to know exactly what is really happening).
Then - we give her Oxygen for a few months to prevent her body from forming what are called collateral blood vessels in an attempt to get more O2 into the body (not good). And we pump up her medicines to give the blood vessels in her lungs a chance to repair themselves.
After 6 months or so - we retest and re-assess!
But of course the devil is in the details.
CHOP - Children s Hospital of Philadelpha has the most experience I can find for this type of situation. It is critical the bands be the right tension - enough to protect, but with room to grow as well. Too loose does no good. And CHOP has a track record in follow on management of this issue. And they are the #2 heart center in the country.
LPCH -Lucille Packard Children's Hospital (Stanford in California) has has suggested a lower risk option for repairing that aortic arch - it would avoid the need to use a heart/lung bypass machine. That machine would be dangerous to Josie in her current condition. The recommendation comes from one of the very best heart surgeons in the nation. And LPCH does have experience with Chinese adoptees. And with Josie's issue. The question is - how much. And can they get follow on care right?
We don't really have multiple chances to do this.
So, right now the best option is NOT obvious. At least not to me.
For my praying friends - please pray we have total clarity about this decision.
And once we make the decision - we are going to need help. I'm just warning everyone!
Blessings -
Mr. M
JJ
Josie
And Me
3 comments:
Praying for your clarity, and for complete healing for Josie. In Jesus' name.
I tried so hard to be clear and failed
LPCH is Lucille PAckard Children's Hospital in Stanford Ca
CHOP is Children's Hospital of Philadelphia
Hi I'm coming in late in the game and don't know all about your daughter's heart but have you tried contacting Children's Hospital Boston? We just returned with our son in March and he had OHS at Childrens last month and is doing well. He is 3.5 y/o and had never had treatment. His defect was loosely ToF with large VSD and multiple collaterals. He also had pulmonary atresia. They put in a cadaver conduit from the rt vent to the pulmonary arteries, closed the vsd and rerouted collaterals as they were able. Bottom line, they are very informative from the start and considered top in the nation for peds cardio. It might be worth yet another opinion. Our card there was Dr. Peter Lang and Shane's surgeon was Dr. Frank Pigula. At least check them out : ). Praying for answers and healing for your little one! Susie www.hiddeninasecretplace.blogspot.com
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