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Our follow up appointment was today. We were glad to hear that the cultures of her lungs came back clear. The Pulmonologist then proceeded to tell us that the Dr. running the PH study contacted him and said that Evie's study was one of the worst he has ever seen.
Gulp!!
Im shocked! This means that all these months, she has battled severe acid reflux. Poor sweet baby!
While we have not seen her vomiting, she has been treated aggressively with medication for reflux for months (just in case) which obviously have not tamed the beast. Hers is silent reflux and it is likely that she is aspirating which has caused her chronic lung problems. Its also conceivable that her "failure to thrive" and poor eating is a result of constant GI pain. This could also explain why she still wakes up 3-4 times a night! Hmmmmm....seems like we could be connecting a lot of dots!
Back to Charleston we go to meet with a GI specialist. We are facing a likelihood of another surgery on her stomach and esophagus. This is another incision on her precious little torso. Its another experience on the dreaded vent. Its another healing from a major surgery.
.....but we'll cross that bridge when we get there.
For today, Im grateful...very, very grateful for the Doctors the Lord has led us to who have been so tenacious and thorough. So grateful there are answers and a plan to help our baby-doll heal and grow!
6 comments:
Poor sweet thing! Hopefully you've discovered the issue so it can be treated. The things their little bodies have to go through are heart breaking to watch. How lucky we are our babies were born in a day where there are treatments and tests able to diagnose and correct. She's beautiful and in my prayers!
Yeah...some answers! Praise God. Poor sweet girl...praying healing over that reflux...and loving you all.
Glad to hear you are getting answers of sorts...I keep praying...and watching this story unfold. Love you guys!
So sad to hear that she's been suffering in that way. However, I am grateful that the doctors discovered this and may be able to fix the issue, thus potentially fixing other problems. I'll be praying for your family as you prepare for yet another surgery. The Lord has given you an incredible amount of strength, Mandy. You are constant encouragement to me in the way you live your life trusting Him.
Poor Evie, reflux is so awful...It's always nice to get answers though to all the 'whys'.. At least now they can help her feel better.. I feel your pain though thinking about another operation.. it's so hard to go through them.
We're always praying for your sweet girl..
Glad to hear those results. I've been praying for Evie and your family. You have shown incredible strength throughout. I have ordered something for Miss Evie and it should be here sometime next week. Please get in touch so that I can find a time to get it to her. It's a birthday/Valentine's Day present :O) My email is jessaro77@yahoo.com. Talk to you soon.
Jess
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