Fresh out of the shower, Janet was getting dried off and dressed when I arrived this morning. Her hair was all spiky and cool looking. I might try and keep it that way sometime. I don’t think she appreciated getting up so early and being tossed around so much as she had a bit of a frown on and was not chatty at all. She sat quietly through breakfast and ate only a teeny bit of peach juice. We did get a good stretch in, especially her right arm as it is nice and relaxed today. There are more “new” nurses on the unit today and chaos ruled with Janet not getting her morning meds until after 9:30 which meant we were late for Physio.

Moira and Robyn welcomed Janet despite the tardiness and Janet started to brighten up. They got her rolling around and sitting up and down and doing some yoga type work on one of the table mats. I don’t think it’s Janet’s favorite activity but the stretching aspect of it was very good for her. At the end of the session they assisted Janet in standing from sitting using a wedge under her feet. Janet took most of the weight but didn’t seem to enjoy it as much as previous and I mentioned to Moira that when I’ve asked her if she wanted to stand the last couple of days she has said no. We think she’s reluctant due to the increased tone in her legs. Maybe.

Connie ran Janet through some vocal exercises and then reading flashcards. Janet did reasonably well but still has trouble with the K sound especially. Today is the day Connie will sit with Janet at lunch and have her try some pureed meat and vegetables. I asked Connie if it was reasonable to discontinue Janet’s 6am tube feed as she has not been eating breakfast really and maybe it’s because she’s full from the feed. She will talk to nursing and dietary about that.

Janet drove Bam Bam style back to her room for the break before OT. We had a nice chat with Marlene the social worker there and Janet was quite smiley and bright eyed. Jessica told Janet they were going to work in the kitchen for OT today and Janet seemed quite excited about that as she headed into the kitchen without waiting for Jessica or me. I left them there so I could retrieve Nash from the groomer.

Looking forward to a productive afternoon.

Houdieno made a brief reappearance this afternoon. Janet was in bed finishing her lunch feed when I returned and she was smiley and chatty for about ten minutes. I then when to get changed and by the time I got back she had one leg over the side of the bed and was working on the second one. Fortunately that was her right leg and it wasn’t moving too well today. I teased her about escaping and she smiled. I helped her the rest of the way to sitting on the edge of the bed and gave her right arm and her ankles a bit of a stretch.

Jessica dropped by to discuss wheelchairs for Janet as I would like to get her her own before my extended health plan expires. She has a model in mind but we need to test Janet in a few different configurations before deciding which is best. I asked if it was too early to be doing this in case Janet changes a lot over the next few months and Jessica said there is no real way to tell. It certainly doesn’t seem like Janet would decline in her abilities and that is the more difficult adjustment to make chair wise so we should be good. Jessica also said that toileting Janet is her priority for the next while and I mentioned Janet’s curiosity about our kitchen and how well she had done opening drawers and cupboards etc. She said they have a mock kitchen in OT and she will take Janet there for sure.

Despite the sunshine Janet elected to take an inside walk today and made very good use of her decision. She Bam Bam’d her way all the way through rehab, the cafeteria, then down the long hallway to the Centennial Building lobby. Huge high five! I only had to keep her clear of a few walls and doorways otherwise she was on her own. On the way back she elected to go up to 4B to see who was there. She was greeted by another enthusiastic welcome which unfortunately overwhelms her to the point where all she will do is smile and whisper hi. I really want them to hear that loud voice. It’s coming. We snuck down to 4A in hopes that Brenda was there and she was. She was very pleasantly surprised and excited to see Janet and complimented her like crazy. Brenda was Janet’s nurse when she arrived on 4B so long ago and last saw Janet briefly just as she moved to rehab. Janet’s progress is immense since Brenda first worked with her and seeing her today was very worth the trip.

Before dinner I asked Janet to write on the whiteboard and she impressed me with some very deliberate attempts at writing something. She wouldn’t tell me what it was but the letters S, E and W were very clear and some others like C and P were placed on top of each other. This is the first time I’ve seen such a serious effort to write on her own without prompting, previously it was just lazy scribble. Nice to see.

Dinner was fun with Leo, Nick, Barb and Alice. Janet ate well and enjoyed the company and chatter staying until only Alice was left. Carol gave Janet her muscle relaxer and we agreed that Janet was much more alert this morning as opposed to when she got that med and bedtime. Janet was very tired by this time so off to bed she went. I laid down with her for a while waiting for her dinner feed to finish and hoping she would get a burst of energy but no go. I helped her brush her teeth and get dressed for bed then said goodnight.

Praying for another restful and healing night.

This morning I was greeted by a very smiley and loudly talking Janet. She was still in bed but dressed and just kinda resting with her eyes closed. Much improved from yesterday. We chatted for a bit and it was so nice to hear her loud voice. She said she didn’t want to get up and go for breakfast but I insisted. She must really not have wanted to because as soon as she was up her voice returned to a whisper.

We got out to the usual table with all the regulars plus a new lady, Barb, and her husband Cliff. They live close to CedarCreek and enjoy “our” wines. Janet smiled at everyone as we said hello and she ate a good portion of yogurt and a little applesauce. Breakfast is definitely not her thing but she did enjoy sitting with everyone.

Back in her room for a stretch I was very pleased with her right arm and shoulder. They seem more relaxed than yesterday. Her legs were very tight to begin with but with some time they loosened up reasonably well. We made it to the gym on time after one little melt down that started as she tried to get up from bed. She was all smiles as we entered the gym and she even asked Moira how she was doing after Moria asked her. In a loud voice too. The plan was to start Janet in the peddling machine then stand her up using the parallel bars. She seemed quite excited and raring to go as I said goodbye.

Looking forward to a sunny afternoon.

This afternoon was a busy one and no matter how much time you think you have it’s never enough. Before I headed back I got a call from Carrie to tell me she had a very powerful visit with Janet in between Speech and OT. There were smiles and tears and hugs and prayers and more evidence of Janet’s growing awareness. Thank you Carrie. You are a blessing.

Janet was still enjoying her lunch feed when I got back. I was earlier than normal but still a little upset she was still plugged in but when I talked to her nurse, Ramjan, he said he sat with Janet at lunch, she ate most of her soup and yogurt and when he asked her if she wanted to go, she said “no, stay here”. Ramjan worked with Janet early on in the 4B days and those were the first words she has ever said to him. He was genuinely pleased. I could no longer be mad that the feed was late since Janet was hanging out with Ramjan.

I tried to get her to tell me about her morning and who had visited but despite a better than usual effort, which included trying to tell me five people had visited her, I got no legitimate answers. She was very bright though and it was clear something exciting had happened while I was gone. We chatted until the lunch feed ended then barely had time to get out the door and drive downtown for a meeting with Linda the Notary. I wanted one more shot at some sort of POA with Janet as opposed to the complicated Committeeship. Janet gave Linda some really good answers in a whispering voice but is unable to answer in such a way that qualifies for a POA. Linda was very kind and supportive through this process and I thank her for the effort.

Janet chose to head back to KGH rather than walk around town. I guess it was too cold for her. I ran into Dr. McCann at the water machine so we had a little chat. He told me the plan with Janet right now is to stay at KGH rehab until after Christmas then start the process of transferring her to Connect. He wants her to have the best possible chance at success here and is hoping she will become more participatory between now and Christmas. She seems to have hit a bit of a wall as far as OT and PT goes so he will try harder to get her right shoulder and arm pain free. The rest of it is up to her natural healing rate. I mentioned my concern with her legs and he will look into that some more too. It may be that the Botox in the legs had more of an effect than we thought as it has been around ten or eleven weeks since she was injected and that is when it wears off so the increased tone may be attributed to that. He will check and if so maybe hit her again. I asked about Janet’s vital signs, her BP seems well under control from the Ramapril, but her HR is always high 80’s low 90’s, is that a concern? Not at this time. He thought maybe it was due to a drug he gave her when she first arrived in rehab but I said it’s been high since the beginning of this. He’ll keep an eye on it but treatment would be a beta blocker and that’s the last thing she needs now. I agree and know from experience. Brutal. I reminded him that the efforts to get Janet onto the toilet have stopped and asked if we could get that going again. I also asked if he would write an order that her muscle relaxer be given at dinner rather than bedtime. He thought it reasonable to try. A quick but productive water machine chat.

Janet and I attempted to Skype Mary/Gaga and while we waited for her to get online I gave Janet a pre-dinner stretch. No change anywhere but as I was working on her legs my mind was trampling through all the information of the last few weeks and trying to sort out the future. I got to a point where I stopped and asked Janet if we could pray. She must have sensed a need to as well as she started crying and held out her hand. Hard to pray out loud when your crying but I managed and I think we both came out stronger on the other side. We finally made a connection with Mary/Gaga but it kept dropping and I think that took a lot of the excitement away from Janet so she wasn’t too chatty. We got out for dinner a little late but Leo, Nick and Alice were still there and Janet seemed pleased about that giving smiles to all. She ate all of her cream of vegetable soup and a little yogurt. There was a note of apology on the tray as the soup was a substitute for something they did not have. Can’t imagine what that would be as I/Janet had ordered soup. Hmmmm.

We returned to Janet’s room to Skype with Cam. Dinner must have woken Janet up as she was quite chatty with him although not very loud and a lot of it in Klingon. My mom had called during the talk with Cam and I told Janet afterwards that she had said my dad is not doing well. She turned her head the fastest ever, looked right at me with real concern and listened as I gave her some details. When I was done she said “I don’t want you to be sad about your dad”, then the tears started again. I was amazed at how tuned into that information she was. To fend off the tears I found a clip of George Carlin on YouTube and we laughed out loud a few times during that. Watch it and see if you can guess what Janet laughed at. We watched a few more funny clips then I got Janet into bed and said goodnight.

Praying for a restful and healing night and for a day of learning and happiness. Praying also for my dad (peace) and my mom (strength).

The only time I liked long weekends was when I was in a union job. Mostly they are a costly waste as evidenced by the level of care demonstrated this past weekend at KGH. Laurel and I have never witnessed the staff so disorganized, grumpy or uncaring as the last few days. Not all of them, just the ones brought in to cover the regulars who took the long weekend off and the casuals who don’t have enough seniority to work a stat holiday. You end up with the greedy jaded ones and the quality goes right down the dumper. To back up my point when I arrived a couple minutes before eight this morning Janet was still in her gown and lying in a very wet bed. She wasn’t complaining at all but she can’t really. Her nurses for today came in a few minutes later and got her ready for the day. They are a good crew but clearly were playing catch up from what was left them overnight. Long weekends always result in a downgrade of care and this one was the worst by far. I really don’t understand how the level of care in a hospital can drop just because someone says it’s a holiday weekend. The patient’s needs don’t change. That is my rant for the day. Thanks.

Janet brightened right up when we arrived at her breakfast table. Leo was back from his weekend at home and Alice even greeted us with a smile. Leo had bought a little stuffed toy for Nash and gave it to Janet, she was quite excited. I hope she doesn’t think it’s hers. Breakfast arrived and despite talking directly to a lady from nutrition services yesterday Janet got creamed rice and thickened orange juice along with the yogurt, apple sauce and Ensure. When I explained to the person who brought it out she said hang onto the menu and keep bugging “them”, eventually they’ll get it. Sure.

Janet ate all of her yogurt and a bit of the apple sauce and a couple tastes of the Ensure. This one was a new flavor, butter pecan. Not a hit. I got her back to her room but with the nurses still scrambling to catch up we had to wait for her bed to be made, then her meds to be given before I could start stretching her legs. I had worked her arm a little bit earlier and it seemed nice and loose. The legs were a different story at first but in the limited time I had I was able to get a good enough result to start the day. I asked Janet to get back up and after a few minutes she had not really tried so I helped her up and in doing so told her “your not helping me much here Janet”. She started crying. I have to be careful about saying negative things like that. She may have been trying just not able to then. Janet really brightened up some more when we arrived at the gym. Moira is working with a student, Robyn, this week and they planned on getting Janet onto the tilt table. That will be good for her legs.

Looking forward to what promises to be a busy afternoon.

Lunch went well for Janet with Laurel saying she ate a lot of her soup and yogurt. Yes, I said soup. She finally got some! Laurel hung out until around one then came home so I could get her to the airport.

When I got back to KGH Janet was in her wheelchair at the side of her bed trying to pull herself forward. I got a big smile and a loud “Hi” when I walked in then I asked her what she was doing and she started crying a frustrated kind of cry. I couldn’t tell what she was trying to do. It didn’t make sense she would try and get back into bed but after some reassuring that’s where she ended up as I wanted to see if she needed changing like she usually does by that time. All was clear so I took advantage of the time to sit her up and stretch her arm a little. That went pretty well as did an ankle stretch. Janet choose to do some talking practice instead of going for an inside walk, she said “that sometimes is not fun”. I agreed. We did some vocal exercises and some pronunciation practice as well as a few of the oral motor skills work. Janet was able to produce a pretty loud voice a few times but not consistently but to end the session her and I did a decent duet of the ABC Song. Sorry, no recording available. Back on her bed I gave a good long stretch to her legs. I’m always concerned about those after I’ve been away but they loosened up and straightened out really nice. Good work Laurel!

Dinner was a double surprise as not only did Janet receive the soup that was on her menu (cream of mushroom) but also a bowl of broccoli soup. She had some mango yogurt to start while the soups were cooling then ate ALL the mushroom soup and a good portion of the broccoli. It’s a good thing she is in a wheelchair as I think she was too full to walk afterwards. It took her over an hour to eat all that so by the time we were back in her room there was only fifteen minutes of talk time before her tube feed ended and she started closing her eyes. I got her to brush her teeth then get dressed for bed. It was still only 6:30 and I didn’t really want to leave yet but Janet had had enough so I said goodnight.

Thanking Laurel for her time and efforts in caring for her mom this weekend and praying for a restful and healing night with a strong day of progress tomorrow.

Laurel went in early to get Janet to breakfast and give me the OK is she wanted to come home for the morning. She did indeed so I headed down after shoveling eight centimeters of snow out of the way. Things still are screwed up as far as Janet’s meals go. She got oatmeal again today, no yogurt and no pureed fruit. I will be grateful to have the regular staff back tomorrow to try and resolve this.

Jason had Janet all dolled up with a sweater and scarf and her hair styled so all Laurel had to do was get her jacket and gloves on and out into the snow we went. Janet has never been a huge fan of snow but I think she enjoyed the change it brings. Once we got home I sat Janet on the couch so she could visit with Nash. He really enjoys the attention she gives him now and is not quite as hyper when we come home. Janet wasn’t offering any suggestions as to what to do this visit so Laurel and I gave her a few ideas and she chose to wheel around the house first. I have reconfigured some of the furniture in hopes it would be easier for Janet to move about and so far I think it’s helped. I’ll keep trying different things but the more I watch her move around the place the more obstacles I see. It’s still too early to tell for sure but chances are some major changes will have to be made when she comes home for good.

After a couple of laps around the kitchen and family room, Janet made her way down to the bedroom where Nash found his ball so of course Janet wanted to play with him. I set her up in the doorway and she managed to throw Nash’s ball about four feet down the hall for him quite a few times. When that was over she quite loudly asked Nash “would you like a Scooby Snack”. He didn’t understand her but I did and Laurel, standing in the family room, heard it too. I wheeled Janet into position in front of the fridge and she reached out and opened the drawer where Nash’s treats are kept. She grabbed the turkey sausage, which he gets sometimes, but I had a container of other things for him so had to tell her to grab that. She closed the drawer and then shut the fridge door. Pretty good. I helped her get a Scooby Snack out and she told Nash to sit but said it too quiet for him so I asked her just to hold it out so he could grab it. With that done I asked Janet to put the container away. The fridge door is too hard for her to open but she got the drawer inside open and plunked the container back into it and shut it up. Pretty good again. I asked her a bunch of questions about various things in the kitchen as was surprised at how she remembered where a lot of things were. She had trouble naming objects but knew where to get tea from and soup. She had a little melt down when she could not say what you would use to make tea in. She did say “I don’t know” and I was really happy with that and she said it in her loud voice too. Much better than “nothing” or Klingon. Janet spent quite a long time exploring the kitchen trying to figure things out. I thought it was cool and a good learning experience for her.

For fun we turned the tv on and showed Janet a recorded segment of Andrew appearing on The Morning Show on Global Toronto. He does a five minute segment every Thursday morning talking about entertainment things coming up in Toronto. Last week I remembered we actually get Global Toronto here so I recorded the episode and showed it to Janet. Despite the really bad Skype connection Global used that day Janet knew it was Andrew she was watching and nodded her head when I asked if he had done well.

A little earlier than we expected, Janet was ready to head back to KGH where Laurel will stay with her during lunch then I will take her to the airport for her flight back to Calgary.

Looking forward to some catch up time with my beautiful wife this afternoon.

Update from Laurel:

I returned this afternoon to find Mom all curled up in her blankets, appearing very cozy. Fortunately, she was also much more talkative than this morning for awhile, and I really enjoyed our chat. She claimed she didn’t fall asleep for a nap, but I think the rest in bed really helps her. According to her nurse, Mom had gotten the cord of the tube feed rolled around her and part of the cord disconnected (not the part that enters into her) while I was away during the lunch break. Still not too sure how that could have happened…

We then got in her wheelchair and headed outside for a walk, although we had to spend much of the time inside as it felt pretty cold. Back in her room, we Skyped with Raj and then worked on some speech exercises. The list of exercises involved a lot of tongue movements, and although Mom took a second or two to figure out what to do, I really thought she did well at them. And, can totally see that these will be helpful to practice in order to improve her speech, as Mom’s speech often involves very little mouth/tongue movement.

We then headed out for dinner, but once again the soup had not yet made it onto her menu. Apparently, the first time they attempted to enter it into the system someone made a mistake, and when they re-entered it after lunch this morning it didn’t happen in time to get on her menu for tonight. Fingers crossed that some soup arrives tomorrow, as Mom seems to be growing less interested in pudding and thickened juice. (I think I would be too.) She did, however, enjoy a few more scoops of DQ ice cream after dinner.

Mom had another crying meltdown when in her room this evening, and when I asked her if she could tell me what exactly was upsetting her she couldn’t say anything. When I ventured with “I’m guessing you’re just wanting to get better and get home” she gave a very emphatic “Yes!” Fortunately she appeared to perk up as we both got in bed and watched “Ramona and Beezus” on Netflix. A very enjoyable time – really felt like old times. She watched pretty intently for an hour and then slowly drifted off to sleep. Hoping she gets a good rest and looking forward to tomorrow.