This one turned into a novel. Grab a cup of coffee. Long, quiet weekend is over and a new week has begun. Lots going on, and thankfully there are “ups” to go along with the “downs”. They changed some of Robins meds a few days ago and now she’s having trouble going to sleep at night, so they’re changing her sleep and agitation meds again today. Last night we were up till 1 a.m. I may have had a minor meltdown around midnight. Quietly. In a corner, in the dark. Maybe. But today is a new day, and more progress has been made. They’ve upgraded her diet from level one (all pureed) to level 2 (soft but not pureed) and she’s gone from spoon-fed thickened liquids to regular liquids from a straw. We have to take the liquids slow to prevent getting too much and choking, but she’s doing great. This morning she shook her head “no” a couple of times in response to a question from the neuropsychologist. That was a first, and she definitely meant “no.” She also moved her right leg and foot this morning, and that was a first as well. They’ve been working to strengthen those muscles and remind them what they’re there for. The goal is for her to be able to assist with transferring in and out of the wheelchair, car, bed, etc. And the thing that’s making me burst out in a happy dance – they’re taking out the peg tube this afternoon! That’s the tube in her stomach that she was fed through for about 6 weeks, and given meds and water through until a couple of days ago. Now that she’s drinking enough water orally and taking her meds with food, they’re taking out the tube… the final thing that she can pull at … the reason she’s had to be restrained and her left hand enclosed in a big padded mitten… the thing that has kept me stressed and on the verge of a meltdown for the past three weeks. There’ll still be a day or so of restraint while the place heals over, but there’s an end in sight! We have several important decisions to make in the coming days. For one, she has facial nerve damage on the right side, which prevents facial movement and keeps her right eye from opening. They can do surgery to try to correct it, but there’s a 50/50 chance it will help, and there’s about that much chance it’ll get better without surgery. So we have to decide whether to put her through another surgery and recovery if there’s just as much chance things will improve without it. At the same time, one of her hearing bones (anvil) is displaced and the ENT feels she would definitely benefit from having surgery to correct that. He’s certain she’s sustained hearing loss and surgery will restore at least some of that. So that will be scheduled for next week. We would appreciate your prayers as we decide what to do when discharged from inpatient rehab (projected date June 25th). We can stay for their outpatient rehab program (4-6 weeks), but that would mean Robin and me living in the hospital’s housing here and driving every day to their outpatient facility 14 miles away. In other words, Robin would be discharged from the hospital and I would be responsible for everything – dressing, bathing, feeding, transportation – everything. They’ve already prepared me that caring for her will be a 2-person job, at least in the beginning, so I don’t know if we’ll be able to stay or if we’ll go ahead and go home for rehab. Which brings me to the next decision – whenever we do go home, whether to go HOME or to a nursing home. She’ll require 24-hour care, and we haven’t got a clue how we can manage that at home, as we all have daytime jobs. If we can’t, we need to find the best place for her, where she’ll be looked after when we’re not there and receive the best possible rehab next to being here. So – lots to think and pray about. Thanks for praying with and for us!
Posted on: Tue, 03 Jun 2014 20:21:34 +0000
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