By process of elimination, Evie has been diagnosed with Pulmonary Hypertension. This means that she has increased pressure in the pulmonary artery into her lungs and this is why her Pulmonologist believes she has been having such severe desaturations at times. As pressure builds, the heart must work harder which eventually weakens the heart muscle. Evie's PH is not severe yet. A normal persons pressure is below 25. Hers is 40. Evie's condition may be related to her heart defect, or it many be an entirely separate anomaly. All the research we have done indicates that PH is treatable but not curable. Needless to say, this is weighing heavily on our hearts right now.
They are starting treatment with Viagra (yes you read that right) to dilate the pulmonary artery. We have been advised to have a second opinion, so we have been referred to yet another doctor in Charleston to look over her history and advise us on how to proceed.
Specific prayer points:
-Evie is scheduled to go to Charleston while C is in Ukraine in December. Pray for an earlier cancellation opening so that C can go with us.
-Unity among the doctors. We have been blessed with WONDERFUL doctors, however, the mixed messages and discrepancies are frustrating. Pray for wisdom and discernment for C and I.
We have seen the Lord work many wonders in the life of this little one. We trust that He is able. We know that He is good.
Psalm 73:26 - My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever!
4 comments:
Praying, friend...
Love the hiney pose! Thanks for making my day!
Love you~Rebecca
Such a beautiful Evie!!!! You are in my prayers!
I had been thinking of you...
Amanda
Praying......What a sweetheart!!!
Well, if you want that second opinion.....I agree. Actually, they were going to give Viagra for the same reason but because she wasn't able to stay off the ventilator and start feeds (because you have to eat something with it.....can't be administered through an iv) they didn't and then took down her hemi operation. My point is that is what they were going to use to treat Lindsay here at UofM too. Hope that is helpful!
Love to you and thanking God for the receptionist that moved your appointment for next week! WHOO HOO!
Love, Suzie
SUzie
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