Thursday, November 27, 2008
We met with Pulmonology in Charleston today. Aside from it being the busiest travel day of the year and a nightmare to be on the road, it was a good visit!
We spent nearly three hours at the hospital and feel that Evie’s case was reviewed in detail. Doctors concur that when Evie gets sick, her symptoms indicate Pulmonary Hypertension and Congestive Heart Failure. The good news is that when she’s well, she is a beautiful, happy, thriving baby! The plan as of today is to carry on and continue meds. We will not introduce Viagra at this time. Routine ECHO’s will give us indication if her pressures are continuing to rise, but the hope is that this too, time will heal! We were urged to keep her away from crowds and healthy through the winter months as even a common cold sends her spiraling down. She is plumping up (her pediatrician commented on her cute dimpled thighs this week:-) and the hope is that weight gain and growth will accommodate healing! Time will tell.
We had the sacred privilege of getting to deliver some Annabelle Baskets to PCICU while we were at the hospital. (See Angel Annabelle on sidebar – this is a precious girl and ministry that is very dear to my heart!) My friend Rebecca began this ministry to heart-babies and allowed me to deliver a dozen baskets that she assembled to celebrate babies in ICU over the holidays.
Turning in tonight very thankful.
Full of thanks!
God has been gracious again and we know will continue to see us through any rough waters ahead. For today, we praise the Master Physician for His continued hand upon her life.
Bubbles!!
Friday, November 21, 2008
Just had to share a direct answer to prayer…
Yesterday I spoke to a receptionist in Charleston about Evie’s appointment for the second opinion with Pulmonology. She was somewhat unaccommodating, saying that there was no room to get Evie in during the week that C is home from India before he heads off to Ukraine.
I cant really blame her.
She has a schedule to keep and said that new patients are especially lengthy because of the intake and initial paperwork.
No can do.
I was prepared to just take her myself.
But prayer can move mountains.
I spent a few minutes this morning browsing the internet for info on “progression of Pulmonary Hypertension”. Not a good place for me to dwell! God knew I needed a reminder that He is in this! Imagine my surprise early this morning when the same receptionist called me back! God had softened her heart. She told me that she had come into the office this morning with Evie on her mind and she was just going to double book the schedule the day before Thanksgiving so that Evie’s daddy could be there too. I was shocked.
It may not seem like moving mountains to you, but no one can deny that God is making straight the path before us. Thank you for your prayers for us again!
Evie has just mastered the trick of pulling her bow out and we just cant have that…
…thought we’d start the day with the upper hand:-)
Wednesday, November 19, 2008
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!
