Scary

I came back to a very smiley and chatty Janet laying in bed with her lunch feed running at 564ml. I could tell right away that the bottle had not been changed which meant that the dose limit had not been reset. To make double sure I paused the pump and went to the nurses station. The one who started the feed got all panicky and practically ran to Janet’s room. I kept telling her it’s fine and you just didn’t reset the dose limit right? She was so flustered she wasn’t listening to me at all. When I asked her if she changed the bottle she responded with “I need to think this through, give me a minute”. It was all I could do to hold back my frustration. This was not a catastrophic event and I had it all figured out and was just double checking but she was in a total panic. So much so that she started resetting everything again, incorrectly, instead of letting it run to 650ml when I would shut it off since I’m in the room now. I just don’t get how some of these people get through the hiring process.

Janet and I were finally able to continue our afternoon chat and she used her loud voice a fair bit for me. She used it really well for Dr. Jones when he popped in to update me on some decisions that had been made at lunchtime. He was thrilled to see Janet so bright and smiley and to hear her voice. Good timing Janet and a nice achievement on the six month anniversary. As a result of the lunchtime test for eating pureed foods, Janet’s meds will now be given to her crushed and mixed into some of the food as opposed to injected into the peg tube. The 6am tube feed has been discontinued and if Janet eats more than half of a meal that corresponding tube feed will not be given. The bedtime feed will continue so she has enough nutrition until breakfast. Janet ate some of the pureed vegetables and a little of the pureed meat but not enough and not well enough to switch over to those on a regular basis. The nectar thick meals will continue for now. Dr. Jones says this is a big step forward and noted in Janet’s chart that he noticed “remarkable improvement”.

We had a little time to go for an inside walk so I set Janet up to go Bam Bam style where ever she wanted. We ended up in the Centennial Building lobby then rode the elevators to check out the skywalk across Pandosy St. I think Janet enjoyed the view. I took it easy on her going back as she had a busy day and said she didn’t want to drive anymore. She was getting pretty tired by the time we were back in her room. I tried some oral motor exercises with her but she was not interested so we watched some X Factor clips on YouTube and that interested her enough until Cathryn came in for a visit. Janet was pretty quiet and showing signs of getting sleepy so didn’t have much to say to Cathryn. She did scare us though when she swallowed wrong and started choking. She was having a tough enough time clearing her throat that I asked Cathryn to go get help and I actually pulled the alarm as well. Amy arrived right away and Janet was pretty much settled by then. I knew she was fine as long as she was coughing but there were a few seconds of real struggle there so I’m glad we got help. Amy took her vitals and talked to Janet a bit to make sure she was OK. We got some nice loud voice from her to signal all was well.

Cathryn wanted to ensure I was up to speed on the Connect option. She confirmed that things will be reassessed after Christmas then the application process will start if appropriate. Once at Connect Janet will likely be there for a longer stay than most. Their program is three months to two years in length and focuses on activities of daily living. It all sounds positive and I’ll be fine with it as long as I can see that Janet is no longer progressing fast enough at KGH. Ponoka has been ruled out as everything that would be done there is being done here. Dr. Miller used to work there so before I put that one out of my mind I’ll talk to him.

Kiko arrived at dinner time so she could learn how to help Janet at meal times. She plans on assisting with Saturday lunches and Janet is looking forward to that. We sat with Nick, Leo, Alice, Barb and her husband Cliff. Kiko was instantly part of the group and Janet wanted to stay longer after she had finished her dinner as she was enjoying the chatter as well despite being tired. Her nurse came by after the meal with her medication and Janet very obediently took one more spoonful of strawberry Ensure to get the med into her. Well done.

It was definitely bedtime after dinner and by seven, Janet was all but asleep after a busy and productive day.

Praying for a restful and healing night and thanking Jesus for the incredible progress Janet has made over the last six months and for all the amazing people He has put into our lives at just the right time.

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