My Heart Hurts!!

Maddie was admitted to St. Mary's Hospital on Monday morning. She had been vomiting so we took her to the Dr. just to get her checked out. They thought it could be possible H1N1 and wanted to take all precautions. My husband told the Dr. if she was going to admit Maddie he wanted her tested for everything... that I was going crazy, losing my mind with the 'what-if's', the trips to the specialists... all the tests and procedures. He wanted all the Dr.'s and Specialists to put their heads together, do all the tests they could possible think of; and figure out why our daughter isn't growing/gaining weight the way she should. The Dr. said ok and she lived up to her end of the deal. When we got there they put Maddie on an IV, drew blood, and took a urine sample. The only abnormality was elevated liver enzymes, which they weren't too concerned about because the stress her body was under being sick and all. The neurologist came in to play with Maddie and ordered a round of tests for day two. They starved her... no formula or food for 27 hours. Maddie was pissed... I've never seen her so upset. We spent the night trying to console Maddie who hyperventilated herself to the point of being put on oxygen. I wanted to feed my hungry baby so bad. Her blood pressure escalated to 128 over 70... I'm not good with those kinds of numbers but know enough to know that it wasn't good. I begged and pleaded with the nurses to let me feed my baby. There was no budging. Good thing George was there... he kept me strong. They did another round of blood work early in the morning on day two. Then later that afternoon we had the MRI. No big deal right... just general anesthetics. We waited for 45 minutes when the door burst open, the anesthesiologist, 2 nurses, and a physician came storming out and proceeded power walking down the hall pushing maddie's crib. I stood up... and saw Maddie lying there with tape over her eyes not moving. I panic'd... felt my knees go weak then it was like I lifted out of body and was watching a movie from the corner of the ceiling. Somehow I found strength ...I ran after them. When I caught up a nurse apologized saying they had to do a CAT scan before Maddie woke up. I wanted to hit the nurse. They put tape over the eyes to keep the mucus sockets from drying out. All was okay except my BP elevated. The results from both tests were normal... and I was finally able to feed my precious LO. She downed 7.5 oz... had never seen her eat that much let alone be willing to take a bottle. Then they came up for the barium swallow test. Of course she wasn't hungry for it, but they were able to get enough down to see that her mouth and throat were okay. Next it was an upper GI scan, which she wasn't supposed to eat prior too... oops no one told us. They shoved tubes down her nose... she threw up... so much for finally eating... they postponed the test for day three. Day three (today) consisted of more blood work, the upper GI scan, and an EEG. The GI scan showed moderate to severe reflux (we already knew this), but other than that all was well there. The EEG was an experience. She had 26 prongs connected to her head then as Maddie's screaming just leave me alone y'all have done enough tests, the tech tells me that he needs her to sleep through it.... an hour and a half test. Did I mention Maddie had just woken up from a nap when the equipment was brought it? My anxiety rose, but my hubby was calm and relaxed Maddie to the point where the tears stopped. The tech put Maddie in my arms, told me I needed to keep her in view of the camera, and asked me if I was comfortable. Maddie slowly drifted off... I felt my eyes getting heavy. We woke up, a lamp flashed overhead a few times and the test was over. At around 6 pm our Pediatrician came in. She said the game plan is we're changing Maddie's reflux meds and giving her an appetite enhancer. It'll be 3-4 wks before we get the results from some of the blood work. She said she'd write up the discharge papers and we could be on our way. (Follow-up appt in her office next wk). I was relieved (and a little disappointed.... still no answers). Literally right as we're walking out the door the phone in the room rang. I thought it was financial services and almost didn't answer, but I did. Nope they weren't hounding me for money... it was the neurologist. He thinks it's a possibility Maddie has Rett Syndrome... I can't breathe... the test is one of those that won't be back for a few weeks. I'm so angry... why suggest it... why not stay silent until there's a positive test... some hard core evidence. RETT SYNDROME? I'm back to being a wreck... I need a cocktail! How can I possibly wait weeks for the results... this last hr has gone by so slowly. Why did I answer the phone? I'm exhausted! My poor baby... why you? Why do you have to go through all this?