Hallie is still at the long term acute care hospital today. Shes been having seizures and other strange neurological events. She has no memory of them afterwards, which is a kind of blessing. However her memory seems to be getting worse overall, which worries us. Hal was having a bit of trouble breathing, so the hospital has added oxygen by nasal cannula to her regimen. It has helped her at night, and even reduces the pain a little bit. Her pain level is still pretty high but she has been getting the pain medication shes asking for. The facility is a lonely place. Because its more of a hospital then a nursing home there are no gatherings of patients, no entertainment or activities of any kind. Just Hallie in the room with her nurses, techs and family visitors. Everyone on staff has been extremely nice, but as always its difficult to educate everyone about her connective tissue disorder, the dysautonomia, the gastroparesis, the hypermobile joints, the pain, etc. etc. The physical therapist came yesterday and failed to read the document we had left about Ehlers-Danlos syndrome. So, of course she tried to walk Hal down the hallway. The result was extreme pain which lasted the rest of the day. The shower after the walk wore her out utterly. We are still shooting for Hallies spinal surgery on November 8 in Washington DC. However, shell need to get a lot better before she can go, and we dont have a discharge date as yet. In the meantime, we are trying to make the room as cheery as possible. Little happy prints from IKEA helped broaden the color scheme and cheeriness factor a little bit!
Posted on: Tue, 21 Oct 2014 15:46:27 +0000
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