Saturday, June 4, 2011

CHOP report

Yesterday as we went to CHOP we were really hoping the increases in Teresa's medicine would produce better heart function . Unfortunately the news was not good. The meds. are keeping her stable for now but she has not had any improvement in her heart or lungs.

Her tricuspid valve is still severely leaking, her pulmonary pressure is EXTREMELY high ,the pulmonary gradiant has not improved,she has not gained weight in 6 months, her hemoglobin is very high causing her blood to be very thick and her liver is still enlarged.
The scenario the Doctor gave us was: water (blood ) is trickling to the crops (her lungs) through the irrigation pipe ( her pulmonary artery ) to water the plant just enough to sustain it for each day . She is slowly suffocating . Oxygen will help her minimally at best. Her lungs are just too damaged to accept the oxygen . We had started Sildenafil 9 months ago with the hope that it would help to dilate her lungs so she could breath better. She is now on the maximum dose. If this has not helped then she may only have a few more months or possibly by miracle a few years if she does not get any more colds . She will have another heart Catherization in September to give us a better reading on her lungs. Right now we need to pray for her pulmonary hypertension to improve . Without surgery there is no cure for this and her lungs have sustained permanent damage from the hypertension . The cure - A MIRACLE !

Teresa needed life saving surgery the first few months after birth to save her heart and lungs . She received pulmonary banding at almost one year of age and it was already too late . Her lungs were already damaged and the band was not put on tight enough causing the damage to continue.
What is so sad is that Doctors from the United States are always traveling to China for medical conferences to teach on the latest improvements in health care.
Teresa's Doctor at CHOP just returned from a 2 week conference in China , visiting BJ., Shanghai, Wuhan , Nanning and Guangzhou Hospitals... NOT ONE ORPHAN had life saving surgery during this time ! Lucy's Urologist at Hopkins is the worlds best pediatric urologist. He went to China last year to operate on a government officials son in Shanghai. Wined , dined , golfed for 2 weeks and only the government officials son was operated on ... NOT ONE ORPHAN ! Why ? Why aren't they aware of this tremendous need to help the orphans also?
Well, I said this to Teresa's Doctor yesterday and as we were leaving Ed said I probably should not have said that , but you know what , if Teresa had received surgery sooner, her life would have been saved. EVERYONE needs to be aware. They can't just live in their own little world and think someone else will help those in need . They have the ability to save so many lives.

If it is Gods will, my dream is to start "Teresa's Heart Hospital in China" .This would allow for orphans to receive life saving surgery EARLY in life , before irreversible damage is done to their heart and lungs. They would be able to receive the best medical care, not secondary care because they happen to be born orphans.
If anyone would like to help , offer advice or has contacts please just let me know . If this is Gods will it will happen .

17 comments:

  1. Ann, I assume you know Kelly Rumbaugh. She has mentioned the same kind of thing--to start a heart program for the kiddos in China. You need to get in touch with her. Let me know if you don't know how to contact her.

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  2. And I am continuing to pray for Teresa, by the way.... Always praying for that miracle, and I thank God for her life with which He has already blessed us!

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  3. I am still praying for Teresa's miracle. She has captured the my heart and the heart of my family. She is such a blessing with her precious smile and sweet spirit.

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  4. HI Ann,

    I am also praying for Teresa's miracle. I offer every mass I attend for her. I also think this hospital idea is a great idea, but I have no idea of how to make it work.
    I agree that many people need to be awakened to the plight of the oprhans and th epoor in other countries. They really have no idea, but it is up to people like you and the rest of us to spread the word about the terrible need to help them.

    God Bless,

    Lee Ann

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  5. Ann,
    Some of the doctors at Mayo (including Abby's own cardiologist, Dr. Cabalka) travel to China and other places to help get heart programs in place. Glenn works with Dr. Dearani (see second link).
    http://www.childrensheartlink.org/home

    http://www.childrensheartlink.org/documents/Improv_Worldwide_CV_surgery_Dearani_PedCardSurgAnn_2010.pdf

    I'm sorry the news from CHOPS was no better.
    Tary

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  6. Tears. Praying. Hopeful for Teresa's life and for the lives of untold orphans in the future who may be helped because of a brave and beautiful girl named Teresa.

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  7. Such sad news, Ann. I'm so sorry. But we will keep praying.
    Another organization to talk to is Shaohannah's Hope (www.showhope.org) and ask them how they were able to fund Maria's Big House of Hope. Perhaps they would partner with you to get this dream off the ground.
    I'm quite certain that the doctors that went to China to do surgery were expecting to actually do surgery, not be wined and dined.
    So sad, and frustrating.

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  8. Oh Ann...I'm so sorry for this news. We continue to pray for precious Teresa...for a miracle healing for her heart and lungs. My two heart babies wouldn't be alive if not for early enough intervention by LWB. It was in partnership with Hope Healing Home, who is also connected to Maria's Big House of Hope. I'm sure someone at LWB could give you some information about starting a heart clinic. Or maybe Lynsay at Morning Star?? You know her, right? She has a lot of heart babies.

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  9. Ann...I will email you tomorrow about ideas. I volunteer with LWB and may be able to help. I feel the same way about our Sammy's burns...never treated, and now he will endure so many procedures (and PAIN!) which could have been avoided if he was treated early on. While, not life threatening, there are so many children that suffer needlessly, and whose lives are shortened....I would LOVE to help you give them a voice!!
    I am headed down to Hopkins again tomorrow, will try to touch base before I leave!
    Love to all of you....and God bless you...I'm praying for Teresa's miracle! Xoxoxo
    Amy D.

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  10. Morning Ann - I so wish the news had been better - how my heart aches...

    I wish I had ideas for you - it's interesting that Marie and I were discussing just last night the 'cultural differences' between our world and China - concerning such things as orphans etc...

    Prayers that your post will bring results and that we get your Miracle!

    hugs - aus and co.

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  11. I love your dream! And if it is God's will, you're right, it WILL happen!

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  12. I SHARE YOUR DREAM, Ann!
    Please email me!
    laineferrill@gmail.com
    This has been on my heart heavy...
    We're praying for Teresa everyday here in Alabama!

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  13. So sorry the news wasn't better. Teresa is in my prayers.

    Do you know Kelly Rumbaugh? She lives near Westminster and she has several kids from China, including Joey who had a very serious heart condition. She also had a dream to start a heart program for children in China.

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  14. I don't have much but if you set up a fund I will contribute something. I am so glad you pointed out to her doctor the lives they are missing on their medical trips. It is so important to realize everyone has value and worth.

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  15. This is on my heart as well! I would love to be involved in a project like this. I don't know where and how to get something like this started, but I know it's SO needed!! courtneyinaz@gmail.com.

    Courtney (MCK)

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  16. I am just so saddened by Teresa's latest heart check. I'm still praying though.

    And your heart, Ann, just could only be from the Lord. I don't know how to start something like that, but I would be honored to help in some way.

    Our daughter did not receive any surgery for her heart in China. Only b/c she had pulmonary stenosis severely … that is what shielded her lungs. I don't know why this couldn't be for Teresa. I often question God and then I realize it is just not my place.

    You did the right thing with the Dr. I am not all surprised to read what you wrote. Saddened but not surprised.

    I hope you all are having a MAGICAL time in sunny Florida. And the doll the CLS made for Teresa … that is just wonderful!

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  17. I have just returned from a mission trip in China. I saw so many kids that needed SHOULD HAVE ALREADY HAD surgery. I am the CEO of a 200 person physician group. If you are working on a solution I would love to help.

    I will be praying for your beautiful little girl who shares the exact same birthday as my daughter adopted from Kazakhstan. Miracles do happen!!!

    PS I am waiting for our daughter to come home from China. She has CP and is getting nothing in terms of therapy. Yet another unnecessary loss.

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