So close....yet so far away.
Lillie's Colonoscopy/Endoscopy was scheduled yesterday (to be done this morning), and Chad and I were filled with hope yesterday after meeting with the Pediatric Gastrointerologist. He was extremely confident we'd have a diagnosis after the procedure...and at the very latest, he was sure we'd know what was causing her chronic diahrea, vomiting and infections by Friday (once the lab results came back from her procedure this week). There is a list of 30 possible stomach disorders he was going to be looking for, and basically told Chad and I yesterday that she wouldn't go home without a diagnosis.
HOWEVER...after he left, the Anestesiologist came in and informed us that due to Lillie's RSV 6 weeks ago, we were going to have to postpone the procedure for another two weeks. (Insert deep breaths and a LOT of forceful calming thoughts.....)
We came home last night discouraged. After spending a week in the hospital, we had envisioned going home with a baby who was WELL...not a baby who is dehydrated and puny. So, we could really use prayers for two weeks of miraculous HEALTH. It is imperative that Lillie not get an upper respiratory infection in order for her to be able to have this procedure. We also could use prayers that she not get so dehydrated that we wind up back in the Emergency Room. It's hard being so close to a diagnosis and then having to wait, but I'm trying to find comfort in knowing that we really ARE close and within 2-3 weeks, we should know what's been making her so sick.
We know she does NOT have:
*Chronic issues due to Antibiotics
*Chronic issues due to a bacterial infection or viral infection
We're waiting to determine if she has:
*Pancreatic Disfunction (ex: Cystic Fibrosis)
*a number of stomach disorders
We were also informed that she needs to be getting out-patient care from a Speech Therapist (she was diagnosed with a chronic oral aversion this week - she won't and never has eaten anything from a utensil and has steadily decreased what she will eat to bread. They've told us this goes much deeper then just normal "pickiness".) On top of that, we've been told she needs to see a Physical Therapist (an Occupational Therapist came in to determine if she was delayed developmentally due to all this sickness and noticed that her hips are overcompensating, and her knees aren't in alignment with her feet when she walks). I however cannot even begin to focus on any of this until she's well...it will be placed on the back burner this month.