For the first time in almost a week...we think we're making progress! This morning we met with the GI that is on call this weekend, and boy, what a difference a Dr. can make. He's already been in contact with our regular GI about her case, and he was humble, thoughtful, responsive and obviously really thinking about the "big picture" that is Elizabeth Joy. He had a lot to offer and over about 45 minutes walked us through his thoughts on her short and long term management. He is unwilling to accept her ascities (extra abdominal fluid) and diarrhea as her new baseline...and suggested that we take an "aggressively conservative" approach to getting her "fixed" in the short term, as well as positioning us to manage her clot, the resulting portal hypertension, and GI issues over the long term. All we can say is, "Wow."
So as of today, WE HAVE A PLAN! Over the next 24 hours, they're giving her 3 "aggressive" doses of Albumen and Lasix in order to draw the fluid out of her abdomen and send it to her diaper. :) The first treatment worked - she pee'd almost 1/2 a liter and her abdomen shrank by almost a centimeter. We'll watch her weight and girth for the next day or two and then make some more decisions, including when to "scope her" (give her an endoscopy to biopsy her intestines and take a look at her vericies...all to hopefully give us some idea of the cause of her diarrhea as well as to allow us to plan for the possibility of a shunt...once again on the table). This endoscopy will happen at some point, but if she's responding well to the diuretics and much of her fluid disappears, we can do it while she's "in house" (still in the hospital). We are praising God for giving us the grace and strength to hold on and hold out until Dr. Sheppard came onto the scene. It was a wonderful birthday present, aside from the fact that this PLAN included giving Elizabeth an IV again.
In honor of the GI bug that started this whole thing, we had a little birthday for our "Elizabug" today. Last year you may remember, we threatened to walk away AMA with Elizabeth if she was in the hospital on her Birthday. This year, we didn't have a choice. BUT, despite our circumstances, today turned out to be quite a pleasant one. Elizabeth delighted the entire wing by saying "one, two" when asked how old she was. Our nurses labored all night to make a sign for her door, and our roommate graciously moved to isolation so we could have the entire room to ourselves for the day (seriously, she didn't have a choice and we hope she gets well soon, but we were thankful for the extra space!) We enjoyed some cupcakes at 4:00pm in honor of the hour of her birth, and later got to skype with Grandpa Harms to wish HIM a happy birthday too! We were so thankful that Grandma Harms could be with us, as it made the whole day better for ALL of us. Thanks for your well wishes, cards, emails and gifts. We all feel so loved.
A Family Portrait. At this moment two years ago, I was definitely not standing up and smiling!
"I like the song, but I'm not too sure what to do with the fire or the food."
Proof that she actually ate a piece of Grandma's cupcake
Enjoying one of her gifts: a book about the rainbow...her current favorite subject. (well, second to the ABCs of course)
Skyping with Grandpa Harms