sleep

Cheap Date. Home for the weekend. #TSJ

Knowing I have the whole weekend with Janet I took my time going out to Connect today, making sure the house was in order before bringing Janet into it. I tried again to time my arrival with the last part of her nap time but like before, she was waiting in the living room with a “I didn’t think you were coming today because it’s so late”. I laughed with her then she told me she was having a good day so far but was unsure of what to do the rest of the day. My suggestion of a short nap was rejected immediately. Lorne reported that Janet had a good morning that included a workout with Karl in the gym. He said he was impressed with her Shuttle session. Hearing that good report I ran a couple of scenarios past Janet as to what we could do before going home and after a lengthy discussion she chose to have a little rest, then pizza dinner, then a little leg stretch in the gym, then home.

The little rest turned into over an hour and a half sleep leading right into the pizza dinner which Janet dove into the second it was placed in front of her. When she was done I took her for the usual bio break and noticed that she wasn’t standing very well during the transfer. She acknowledged it too and couldn’t say why. I tried a few more afterwards with her and felt she was lacking some energy so I called off the gym, packed her up and took her home.

Being home a little earlier than planned gave us time to watch a movie. I wasn’t confident Janet would last through it but she insisted she would. After finishing her first piece of pizza at dinner she took a rather long pause. I asked her if she was going to keep eating and she said “how can I when I have no more?”. There were two other pieces on her plate, both way over on the right and when I turned her head she laughed and started eating one of them. With that in mind I wanted to do a little vision test before we watched the movie. I asked her to read what she saw on the TV screen. It was a still frame of the order screen for the movie we selected. She read the upper left portion no problem but said she couldn’t see the right side of the screen. I went up with my hand and she saw that fine after I made her physically turn her head. Prior to that cue she was still looking off to the left even though I was saying look right. Satisfied that she could see the whole screen I started the movie. We watched Life of Pi and Janet made it through easily, enjoying parts of it, finding some of it “upsetting” and overall feeling happy that she watched it. There were times when I could sense she was emotionally into it, a first I think. I repeatedly asked her during the movie if she wanted to have a snack and or a pop, a family tradition, but each time she declined. Cheap date but not quite as much fun.

There was no argument about going to bed after the movie and I’m praying for a restful night that gives Janet lots of energy and strength for tomorrow. I’m not sure what she’ll need the energy and strength for as we have absolutely nothing planned and when Janet heard that she smiled big and said “good”.

A Moving Monday. Janet rebounds a little. #TSJ

Hoping to get answers to Janet’s lethargy and pain I called her doctor’s office first thing this morning and got the impression I wasn’t going to be able to speak to her as she was booked solid. The lab results had arrived and were just faxed to Connect before I called so that was my next call. Jess reported Janet was OK, oddly complaining about sitting up whereas yesterday the complaints came about laying down. She was slowly drinking a smoothy and seemed relatively fine but Jess had no intention of taking her to the gym or anything like that. Nurse Jen and I talked about the lab results which indicate that Janet’s Dilantin levels are within the therapeutic range but at the low end of it. I’m surprised by that and even more concerned now about Janet’s tolerance for that drug. There are a number of things that could be affecting her though, bladder infection and dehydration primarily. Jess just missed a chance at a urine sample before I got in this afternoon and will try again in the morning and as far as the dehydration goes I don’t think Janet is but she can certainly drink more and maybe needs to do so to overcome the effects of the Dilantin.

Jess had just put Janet to bed when I arrived about 1:30 this afternoon saying the first part of the day had gone fairly well and Janet ate a decent lunch before nap time. She was awake when I went into her room and we had a brief chat before nurse Jen came in to examine her a little. Janet’s vitals are normal and there is no evidence of anything wrong other than she’s a little pale and complains of pain from time to time. The problem is she indicates the pain is in a different part of her body every time you ask her. One area that does get mentioned a little more than others is her left butt cheek. I can’t trigger a pain response there but she does touch it sometimes when asked to show where the pain is.

Jen left just after two and Janet was snoring minutes later and continued till 3:30 when Bob stuck his head in the door on his start of shift rounds. Janet fell back to sleep quickly and save for one more brief eye opening slept loudly till 4:50. It took a little while for her to get her speech going but once up in a sitting position started to come around a little quicker. By the time we were in the kitchen for dinner she was pretty bright and happily started drinking her water then ate a large dinner complete with one of Sandrine’s macaron for dessert. Thanks Kiko and Brenda!

I tried getting Janet to make her March Madness picks the way she used to, by choosing the team with the nicest uniforms, but I couldn’t find a website that made it easy to do that so I just had her pick the name of the team she liked best for each match up and she ended up picking Indiana as her winner. A pretty good choice I think. It was movie night in the neighboring house and Janet agreed to go over there with me to watch for a while. Unfortunately the movie was one of the Pirates of the Caribbean sequels which Janet found to be very uninteresting but she enjoyed being there with the other residents and hung in for about an hour. I gave her a bio break once we got to her room and she thankfully and surprisingly had a bowel movement. I was way more happy about it than she was and she says she wasn’t feeling any better because of it. Still a really good sign and hopefully Janet will realize some benefit by the morning. We read some news articles on the iPad for a while after that. I asked her to read and she would get two or three words at a time but no more and was starting to lose her speech and agreed to go to bed at 8:45. I was pleasantly surprised at how long she lasted tonight and by her increased brightness and I must credit the long nap for that. To me Janet is still showing signs of an intolerance to Dilantin and there probably is something else going on but today was much better than yesterday.

Janet’s doctor never returned my call but I’m confident she will tomorrow and I plan on taking Janet in to see her Thursday after swimming as long as she doesn’t get any worse. It certainly appears she’s getting better but we still don’t know the cause of all this. Praying for another restful night and an even brighter day tomorrow.

Permission to Sleep Through a Meeting. Janet does what most of us want to. # TSJ

Janet is really catching onto this napping idea. I encouraged her and the staff yesterday to have her nap right after lunch today so she would be awake for the two o’clock team meeting. I arrived at 1:30, Janet was sleeping after Jess put her down a little before one. I quietly went into her room at 1:55 and she was very deeply asleep. So much so that she didn’t wake up until I came back in after the meeting at 3:20. I can remember many meetings in the past I would have loved to sleep through, not this one though but I’m glad she did. With over two hours of nap time I was expecting a very bright Janet. That’s not exactly what I got but there were some bright moments.

Heather requested a Skype chat and I thought Janet would be raring to go like she said she was. We connected with Heather about twenty minutes after Janet woke up and I think she could’ve used another twenty as she was very quiet and not focused in the conversation at all. She kept playing with the game boxes and other things on her desk and just wasn’t participating so we ended the call sooner than anticipated.

We made our way down to the kitchen to see if Janet could help with dinner. Her laundry was there for some reason so we took that back to her room and she very diligently put it all away. Strange how she enjoys that task so much.

Chris made a nice BBQ chicken dinner for everyone and we had an enjoyable time at the table. Janet wasn’t talkative at all but I could sense she was enjoying the chatter and she certainly ate well including ice cream for dessert.

Janet accepted Garrett’ s offer to go to the gym tonight and I made sure to praise her for that decision. She came back with a little more energy than when she left and Garrett was pleased with how things went, more so than Janet was. She chose to use her energy to watch some YouTube before bed and really enjoyed that and had some good comments about what we watched.

The team meeting today was a good sharing of information and planning for the next couple of months. Overall the team feels Janet is progressing as expected, slowly but surely. We talked in depth about the Dilantin overdose and all agreed they saw signs of its affect on Janet. I still think her levels are high but we won’t know until her next blood test which is next week. There is still concern about the spasticity in her legs and Tez is motivated to throw every available treatment at her to try and gain some improvement. I expect Janet to be cleared for the pool tomorrow and hopefully start some hydrotherapy next week. There may be a way to bump up her Botox appointment but I need some cooperation from CPP and the good folks at Pharmacare first. It was mentioned that Janet is transferring using the sliding board quite well and Garrett reiterated that tonight saying she did her best one from wheelchair to table mat yet. Jess agreed that Janet loves to be involved in household activities and will try and get her doing more. The other big issue of course is the afternoon nap and all agree that Janet needs one and I think finally Janet is acknowledging that as well. Brian will start to transition Janet out of the hospital bed and that might help Janet feel better about napping if its in a real bed. I’m very pleased with the people that are caring for Janet and I think she is too. Yes, she’s progressing slowly but she’s come a long way her three months at Connect.

Praying for a restful night that provides healing and lots of energy for an active day tomorrow.

Good to See You #TSJ

Janet was very bright and cheery this morning when I arrived before taking her to the eye doctor. The dietician had already been and gone and Garrett reported that she had a little conversation with Janet and reviewed her chart and said all looked good, carry on. I was hoping to speak with her but maybe next time. Janet said she slept well and had a good breakfast. She knew we were going somewhere this morning but couldn’t remember where. I was encouraged by her responsiveness.

We had a good appointment with the eye doctor, spending an hour examining and chatting about Janet’s condition and he will prepare a detailed report for Connect over the next couple of days. From what I saw and from what he told me, Janet’s eyes are healthy, they are aligned almost perfectly with the left one maybe very slightly deviated but not nearly what it was a few months ago. There is a large floater in the right eye. This likely occurred at the time of the rupture or soon after and there is no treatment needed for it. Janet’s vision may or may not be affected by it and she may not even know it’s there. Janet is displaying some right side neglect and just how much will be determined when we do a vision field test next week. There was not enough time to do one today and the doctor wants Janet at her best and brightest to give the highest probability of success. Janet’s prescription is fine for now and her glasses are still good for distance as prescribed and she should not wear them for reading. With her glasses on Janet tested at 20/20 or close to it and she was able to read impressively well. As we have known for some time, she often gets stuck and repeats a word or number, she did that today a number of times during the exams and it was interesting to see the visual cues the doctor gave her to erase what she was stuck on and start fresh. Covering an eye briefly, looking up at the ceiling briefly or closing both eyes then re focusing. He would like us all to start teaching Janet some of these cues and feels she can regain a strong ability to read one day. She currently can go four to five words before stalling and that is impressive considering.

Home for a wintertime lunch of grilled cheese and tomato soup was next on the agenda followed by an afternoon nap. Yes, Janet slept for over thirty minutes this afternoon and quite deeply too. I had to wake her up so we could get back to Connect in time for a workout before dinner. We managed to Skype with Mary/Gaga before leaving and enjoyed a good conversation with her. Janet was pretty loud and was able to answer some questions about what she had been doing. I’ve noticed a real improvement in that area lately. Earlier in the day I had read an email to Janet sent to me from an elementary school friend of hers who found this blog and wanted to get in touch. Her name didn’t register with Janet when I first read it to her then when I told Mary/Gaga who very clearly remembered her, Janet’s memory kicked in as well. Her and Karen were close friends in grades five through eight and we look forward to at least virtually reinstating that friendship.

In the gym today we had only a small battle about working on the Shuttle. Janet gave in a worked hard with some good results. It helped to have Phil getting his first workout at the same time as the therapists encouraging him could be heard easily by Janet. Phil was with us at KGH Rehab and is doing really well. Glad to have him at Connect. Janet’s legs are quite tight, maybe tighter than the last time I worked with her but I still managed some pretty good range and she was able to do lots of movement in both herself. She gave two strong attempts at the stripper pole but was pretty tired so was not that successful. All of the transfers I did with her today were standing, except for the car, and she did very well with most of them.

Dinner was another beautiful Rikki creation followed by a nice warm shower, some reading of Slow Dance and a Janet initiated prayer. She was very tired and only managed “thank God for Andrew and his…” The rest was Klingon but I’m sure God understood. We prayed as always for rest, healing, restoration of the ability to walk, use of her right arm and hand, complete restoration of her vision and ability to talk loud all the time. Looking forward to a fun day of recovery tomorrow and a nice sushi dinner at home with Joel and Kiko. Thanking God for them and all the other cool people in our life.