Peter had a few really good days (over the weekend) which were a lot to do with getting more sleep. However, the last couple of days he has had less sleep and is feeling more exhausted as a result. He has also developed some nausea which is proving difficult to ease and this, coupled with the need to cough up phlegm "plugs", means he has been draining energy reserves and finding it difficult to recover. I am hopeful that he might have got some more sleep last night but he says he is "scared stiff" at night and as he has only 1 functional hand, he is in difficulty often at night because he needs 3 hands to help him hold a sputum bowl, wipe his mouth and hold his oxygen mask. Unfortunately the night staff are busy and don't offer Peter the kind of support he needs so he has escalating stress at night.
I spent the early hours of Saturday morning with him after he called me at 1.40am. It was a long day - 12 hours through Friday, then 3 hours sleep and then another 11 hours, before going home on Saturday afternoon for a couple of hours sleep and returning for another 3 hours until a volunteer could arrive to be with him overnight.
Meanwhile we continue to work on his feeds with the nutritionist, who is a joy to work with; and today, if Peter is up to it, he has asked the physio if he could take some steps using the "Forearm" walker and 3 people to assist so he can do more than walk on the spot. We have to be careful as his calf muscles have shrunk away and so he needs to be supported and gradually built back up if that is at all possible.
Doctors still think this is a gradual downward path. I remain "pragmatically optimistic" about daily gains and hope I can get Peter home in some weeks.
Leanne
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