Friday, November 18, 2011
It was a very long day . Friday we went back to CHOP for Teresa to meet with her new Doctor in charge of pulmonary hypertension . She is being transitioned from her HLH Cardiologist to the pulmonary hypertension team. This is definitely a step in the right direction . After a long day of testing, we met with Dr. H. to go over the results and talk about Teresa's future plans for treatment.
Two months ago we were ecstatic with hope of Teresa's lungs showing signs of improvement. Friday things were a little more subdued. Several major events need to take place before we can really start to look at the options for hope of a long future .
Teresa has two major issues of concern . The first, her heart needs to be repaired or have a transplant. It will not function forever in the condition it is now. She is already on very high doses of meds. for heart failure. The second issue, her lungs are severely damaged from 5 years of extremely high pulmonary pressure. The state they are in now , would not sustain a heart transplant or any kind of heart surgery . Up until 2 months ago we were told she was inoperable. But now her lungs are showing signs of slight improvement. Dr. H said he is an optimist but at the same time very realistic. He doesn't want to offer us false hope but he also does not want to take away what little hope we have. Optimistically speaking , he wants to start 2 new meds. for her lungs and in 3 months see if they are helping her lungs to improve. IF her lungs show further signs of improvement, THEN we could discuss the option of transplant or repair surgery . Realistically speaking, he is not sure IF she will ever get to that point. Right now he said he is trying things outside the realm of what are possible. He feels she has very little reserve to fall back on and without her lungs improving she is headed for catastrophe . Her lungs could continue to improve slightly but never reach the stage they need to be at for a transplant. At that point he felt she would have MAYBE two more years of life .
But the way I look at it ... one year ago she had NO HOPE, at least now we are slowly working towards the potential for HOPE. With out hope , life is VERY hard. Everyone needs hope .
As Ed and I sat there and listened to Dr. H as he explained all options for Teresa ,I had an unusual sense of peace as he was talking . A year ago this would have really upset me . But I have seen so many miracles take place in Teresa's life already. I KNOW God is healing her lungs and will provide what is best for Teresa's life to fulfill her purpose here on earth .
God has always provided for Teresa what ever she needed and I know He will provide for her now . She is already a living miracle.
Teresa could not wait to get home and tell everyone how she did not cry when she had her blood test. Gemma had her blood transfusion Thursday and Teresa always holds her hand and tells her not to cry ( it never works though , Gemma always screams ). Gemmma was not so happy to hear of Teresa's bravery .
One of Teresa's favorite movies is High School Musical .Guess who is her favorite character? Sharpey! She has the walk , talk and attitude to show for it too. In the Hospital the Echo. Tech. made the mistake of saying how he liked her bag. (she carries her little pink purse on her shoulder ,she was wearing her favorite pink dress with her red sparkle shoes and when she walks she flips her hair with her hand ). So as the tech. said this, she did a 360 turn , flipped her hair and in her best Sharpey voice said ," It's NOT a bag , it's a purse". ALL the nurses started laughing so hard, I had to apologize for her little attitude. But it is this attitude ,her strong will and love of life that make her such a special little girl . She is one very determined little girl who knows exactly what she wants and who by the way gives the best hugs and kisses!
Please , if you could help us to pray for Teresa's lungs to show continual signs of improvement and her heart to stay strong . As always we are eternally grateful to everyone . We are so happy to be celebrating our second Christmas with Teresa and another Birthday with her in our family !
Posted by Our Family at 11/18/2011 10:45:00 PM