We had a wonderful experience at CHOP today. We did not receive the news that we longed for but we received a little bit of HOPE . Life is very hard with out hope.
After having a very detailed heart echo for 1 1/2 hours, we spent the next 2 hours having a very detailed discussion with Dr. Rychik and his nurse in charge of the Single Ventricle Survivorship Program ( she is an angel sent from God to help us!). They went over every detail of Teresa's heart , from the time she was born ,to the surgery she had in China to how her heart is functioning today . They explained her heart to us in such detail that I finally feel at peace. Peace in knowing we have done everything we could here on earth for her. There is no other hospital , Doctor or magic cure that can save Teresa's heart. Her heart is so unbelievably deformed and her lungs have become so irreversibly damaged that only GOD can save her now. If she had been born in this country she would have received life saving surgery right after birth to repair her heart and her lungs would never have become so damaged . But she wasn't born here she was born in China, an orphan. Life is so unfair to some.
I am not mad at China or the wonderful people of China ( I love this country , it has given me 5 amazing daughters!) I am almost afraid to write who I am mad at ...
GOD. How could He have created her this way knowing the pain and suffering she would have to endure? I know GOD is looking at life from eternity and I am looking at life from here and now. I want Teresa to live like every other child and not to have so much pain and suffering. I want her to be able to go to school , graduate from kindergarten , run and play with out turning blue and experience all the fun of just being a child . Everything that comes for granted to so many .
The hope that CHOP gave us... to start Teresa on a new medicine that could possibly lower her pulmonary pressure a little , stop some of the damage from continuing in her lungs and help her to breath a little easier . Her oxygen was 66 today ( this is becoming extremely dangerously low and oxygen only helps to bring it up a little. She is slowly suffocating ).
The new medicine is VERY expensive ( $1,ooo dollars a month ) and not covered by insurance. The Doctor is going to make a special appeal to our insurance to see if they will cover the cost. We are praying that it is covered.
Dr. Rychik also agreed with the Doctors at Hopkins in that he does not recommend any surgery . He feels she would not survive any attempt to correct one or two of the many defects her heart holds. He said it was a miracle she survived birth .
He estimated her life expectancy of maybe 3 years. ( that is as long as she does not get pneumonia, the flu , any virus or a cold). She is also at high risk for a stroke.
This little girl has been such a blessing to us . Our life is so changed now, not in a bad way , just a different way forever. We see so much in a different light . Things that use to be important aren't. Life has taken on a totally different meaning... to help one little angel sent from GOD to know the love of her own family . I hope for a very LONG time. Just waiting for GOD to agree with me.