Friday, November 18, 2011

Trying New Meds.


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 !

10 comments:

  1. We are still praying Ann and will continue to pray for your sweet, spunky, beautiful Teresa!!!

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  2. Praying, praying, praying for your brave little girl so full of spice!

    You go Miss Teresa....show this world what our God can do!

    I have faith that Teresa IS going to live a very long and happy life! She's married to Jesus...remember? :)

    Love and blessings,
    Robin

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  3. We pray for Teresa every day! She is such a blessing! We're trusting in God's plans for her and thankful that we get to keep reading about her courage, grace and silliness through all her adventures!

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  4. Following your journey closley...my sweet girl, still in China, has similar diagnosis.
    Praying for your sweet Teresa!!

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  5. I am a lurker, praying for your family!
    I have to tell you that when your post popped up I was taken by how good Teresa's color and lips are looking! When I read the reserved assessment by the dr. I was kind of surprised but I guess we shouldn't be. He is a dr. here on earth not our HEAVENLY, ALMIGHTY, PHYSICIAN!! God isn't going to heal her all at once. Her little body couldn't handle it. He is doing the work day by day!
    We are praying and rejoicing with you day by day! Sheri

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  6. You go Miss T - hold onto that attitude - it will serve you well!

    And as always - we will hold you and your family in our prayers!!

    hugs - aus and co.

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  7. Continuing to pray for all of your girls.

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  8. HI Ann,

    We pray daily for Teresa and your family. We will never stop because we believe miracles are always possible. We truly believe she has already received some, and will continue.

    God Bless,
    Lee Ann

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  9. We are praying for Teresa-- none of us really know how much time we have-- could be years, could be days, could be just a few minutes.

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  10. Continuing to pray!! Love the story of the little tude. Glad for the Lord's peace for you, will pray it continues with all you have in your daily schedules and Dr's visits. Wishing you all a happy and healthy Thanksgiving time together!! - The Carrs

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