Tuesday, January 20, 2009
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!
Tuesday, January 20, 2009
For my blogging friends, no, Im not usually a Not Me Monday participant…but this day centered around the adorable antics of a two year old had to be documented. (And, I needed a “lighter” cause for posting today!!) For those not familiar with this, Not Me Monday is a chance for moms to (confess) …ahem…I mean pass the buck and clear any misconception about what they absolutely did not do. That being said, without further adieu…
No, I would never let my child play out in the rain or swing an umbrella around with the dangerous spokes as though it were a golf club.
And…since it is universally known that two-year-olds hate naptime, I will have to assume that my daughters ever compliant, even eager attitude to take her afternoon siesta is a direct result of my careful training. Not because I use coercion and bribery and she knows she gets to share a a hand-full of chocolate chips with mommy at nap time every day. Nope. What kind of mom would stoop to such tactics? Not me!
And you know those little kid crafts with the peanut butter and the bird seed that you hang in your yard and attract birds? I absolutely did not find the one that was lovingly created two weeks ago within Isabelle’s clutch outside today and tell-tale signs of an afternoon snack all over her face!
ooh gross!
Since Im sure that all you “with it” moms out there have never has such moments, Im glad I don’t have to clarify that it was NOT ME!!
The jury is still out on Evie. We meet with the Pulmonologist tomorrow who conducted her surgery, so please keep praying we’ll get answers and a game plan!
Thursday, January 15, 2009
Surprised and relieved… the surgery actually went through without a hitch. An anesthesiologist, nurse anesthetist, physicians assistant, two nurses, and two doctors (who showed this time) attended to Evie in surgery. The doctor team met with us to confirm that all had gone well. Her lungs look better than expected. There is slight compression on the left side, but it is believed that this is due to her original heart defect. Biopsies of both lungs will be cultured and should give us more information.
I got to be with her coming out of anesthesia in the post-operative care room. She woke up throwing her weight around and promptly kicked off most of her leads and nearly pulled her PH probe that is supposed to stay in overnight. From the probing of her left duct, she was crying blood-tinged pink crocodile tears! Oh so sad!
We were told to expect her to be back to herself by this afternoon, but she is far from that. Judging from the 7 hours she has slept today, I think she’s still feeling the sedation. She is most upset about the restraints they have on her arms to keep her from grabbing the probe in her nose. She has developed a fever which has made her heart rate spike and she’s thrown up several times. I think we’re in for a long night. She’s a tummy sleeper (which is covered with EKG lines) and loves to cuddle her blanket (which is impossible in this “straight jacket”).
She was feeling up to a couple visitors this evening. Levi (aka Scooby-Doo) is a “therapy” dog (a whopping Great Dane who weighs more than I do) that makes rounds in the children’s wing. Our favorite Richland nurse Judy (who actually worked on Evie in the ICU the night we almost lost her) came by for a visit this afternoon. The precious Butcher family brought me dinner and Wyatt was Evie’s honorary big brother tonight and even got a couple giggles out of her while playing peek-a-boo. Grandma and Mrs. Brenda came by with a beautiful birthday balloon for the princess. So here we sit, holding court:-)
So many memories in this place…kissing her and the overwhelming smell of medical tape on her face, the constant beeping of monitors, dry hands from harsh antibacterial foam, a tangle of wires and probes that quickly form a jumbled mess and that sad little face that doesn’t understand why she’s going through so much. What a day.
Thank you for praying her through another valley. God has again been gracious and we have felt carried today through your prayers and support! May her tiny life continue to bring glory to her Creator!
…and may this year be a bit easier on the little munchkin!
