Rough day for Lily Grace. I returned to the hospital this afternoon after a blissful respite at home thanks to Mimi (Karol). Lily was thrilled to see me, and I even got a few smiles and giggles for my first hour back. The happiness was quickly exchanged for pain. As predicted, her Protein Losing Enteropathy (PLE) has flared back up from the trauma of surgery. Lilys weight is up 5 lbs, and she is miserable. Since she is almost 2 weeks out post-op, her Fentanyl has been weaned off. The only thing Lily is on for pain is IV Tylenol...which is laughable. Lily lives in constant pain, so I have been trying to differentiate between that and something more serious at this point in time. Unfortunately, that is proving to be very difficult. The goal is to get Lily back on all of her home medications, and to the Heart and Kidney Unit. Prior to the PLE flare up, we were hopeful for a quick discharge from HKU. Now that is all very uncertain. My gut feeling is that Lily needs to be home. She has not been herself in two weeks. Lily needs to find her will to live and fight again. Please pray us HOME
Posted on: Mon, 26 May 2014 04:08:45 +0000
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