Janet is home for an extra night this weekend as she has a doctor appointment tomorrow morning so this will be a short update.
The last few days have been very positive for Janet. Friday we hosted our wine club and Janet said it was a lot of fun, more so than usual but not because of the wine she drank. She said she just felt more relaxed and able to contribute. Saturday of course was baptism day and that was amazing. I’ll give more detail as soon as I can link you to some video of it, hopefully tomorrow. Janet had a large cheering section, including Cam, and her testimony and courage had a positive impact on a lot of people. Today was pretty chill watching football with Cam and walking to Urban Fare for lunch with him. Janet tolerated the minus three temperature better than Cam and this is the third time we’ve been able to walk in the cold. I think as long as its sunny and not windy we can still go out. Nice!
Not much progress has been made on the picking things up off the floor front but we’ll keep trying. Its just a fear thing. Praying for a good night of sleep and a productive Monday.
And so it begins. Janet is home for the next ten nights, five here then five in Ottawa, and she is very excited. It was a good day of transition for her as she did an express version of her gym routine this morning then went with the rest of the house to a park in Vernon for a picnic lunch. She has a little trouble in figuring out what to wear for outings like that and ended up over dressed for what was a warm day even though it looked cool.
The “ducky” weather is coming.
Getting a head start on nap time.
We packed Janet up after a brief nap and drove to her doctor’s for one last round of power washing her ears. Our car went through a power wash on the way as we hit a massive thunderstorm with some of the heaviest rain I’ve ever seen. Janet was actually a little nervous about it but by the time we hit Kelowna proper it was like it hadn’t rained at all. That’s why we live here folks.
Janet was very brave at the doctor’s and her ears are now squeaky clean. My plan for her at home and on the trip to Ottawa is to do as much walking as possible and use the wheelchair only when necessary. That began nicely as soon as we got home. Janet walked in from the car to the bathroom then out to the kitchen where she chopped veggies on her own for dinner. She seems to be at a perfect height sitting in a real chair at the island for chopping and stirring. Janet did an awesome job tonight and rewarded herself with a glass of wine with dinner.
I thought if we went for an after dinner walk we might see some of the neighbours but our after dinner is closer to a lot of folk’s bedtime around here so no one was out. It was nice to get some air before watching So You Think You Can Dance. Janet made some really intelligent remarks during the show and overall is showing more improvement in the memory and awareness department. Her walking tonight was solid and she did all of her nighttime stuff in the bathroom unassisted, with no wheelchair.
Praying for a great night of sleep and a productive Friday.
During my lunchtime phone call with Janet I encouraged her to have an early nap as we had to leave earlier than usual to get in a doctor appointment before SheLife. No surprise that when I got to Connect, Janet was hanging out in the living room and telling me she couldn’t sleep. Oh well, I was confident the adrenaline would keep her going and it did, she even managed a 23 minute walk down the hallway before we left.
Her doctor doesn’t feel there is anything physiological causing Janet’s “accidents”. She feels it’s more likely Janet is distracted or stressed at the time, which makes sense in a lot of ways looking back on the incidents. The plan for the next little while is to ask and encourage Janet to go to the bathroom more frequently and assure her that it’s OK to stop what she’s doing and go. She reminded us that although Janet is improving overall, the rate of improvement will not be constant. There will be moments of decline but overall the trend will continue upwards. I’m glad we went to the doctor about this and now I can be more patient and understanding going forward. As a side note Janet’s Dilantin levels were nicely in the therapeutic range so it’s safe to say that is not a contributing factor.
The doctor’s appointment ran late leaving us very little time for dinner and we arrived at Trinity with just enough time for a pee break and a quick run through of Janet’s speech. She was pretty amped up heading into this as were her table mates.
After her run through
She did a fabulous job standing at the podium confidently and speaking clearly and loudly. Janet ad libbed a lot of it, maybe in part because I forgot to give her her reading glasses, but mostly because she really wanted to speak to the ladies rather than read to them. It worked and she made all of the points she wanted to make. Here is the video.
And here is her original script. SHELife Speech
Janet was very pleased she made her speech tonight and was surprised at the reaction she got. I’m not. As I said goodnight I told her she was awesome and her reply was, “I’m wasn’t awesome but sure was on tonight”. Indeed you were Janet.
Praying thankfully for all that Janet has accomplished, for everyone that has helped along the way and that this is only the beginning of more improvement.
Jess put Janet through her paces this morning completing all her exercises before I arrived to take her to her doctor appointment. That made the rest of the day a bonus for Janet and she took full advantage of it.
This visit to the GP was for Janet’s first full physical since before her injury and she was a little nervous about it. She was all smiles afterward though saying “that went well”. It did, and she’s doing fine. There is some lab work to be done and we stopped on the way home to get her Dilantin levels checked. That is the med that changed dosage last week as Janet’s levels were too high. Today they are in the proper range but no explanation as to why someone who’s gained weight would need less of a drug than before. Oh well.
Once again Janet was pretty tired after a busy morning and happily flopped into our bed after lunch. She slept for a good two hours and when I went in to check on her she was sitting on the edge of the bed. Her reasoning was she had to go to the bathroom. She thought if she called me that she would get in trouble for not sleeping so she was just sitting there waiting for me. Seems Janet still has trouble interpreting elapsed time and hasn’t fully grasped the level of priority that going to the bathroom has.
With the sun beaming in we enjoyed a nice dinner together before I took the biggest risk I’ve taken with Janet yet. SheLife is on hiatus for a couple of weeks but the work to be done around the church never ends and I had made arrangements to help tonight. Janet was supposed to be watching the rest of The Sound of Music at Connect with Chelsea but those plans had to change due to staffing issues. That meant Janet had nothing to do at Connect and I didn’t want to give up my time at the church so I let Janet stay home alone for the two hours I would be away. I was way more nervous about it than she but I held myself to two phone calls to check on her and when I got home Janet was starting to wash the dishes after singing her way through the Carrie Underwood version of The Sound of Music. Turns out I had nothing to worry about.
Our return to Connect was a bit of a downer for Janet but after a bit of reading she was ready for sleep and is looking forward to Laurel and Raj visiting tomorrow, mostly so she can have a long weekend at home.
Praying that Janet has lots of energy, a positive attitude and a willingness to work hard tomorrow and every day.
Janet was waiting for me in the living room at Connect in anticipation of our meeting with Tez this morning and waisted no time in getting on with it. The AFO seems to fit Janet well, she complained of a little irritation on her ankle bone last night but all was well today as she was wearing longer socks. Tez took her through the basics of getting out of her wheelchair, instructing Janet to get as far forward on the seat as possible before trying to stand. That works every time but Janet often forgets. Although walking all the way to the kitchen last night was a significant accomplishment, Tez wants to return to basics as far as Janet’s walking goes. She is still reluctant to put much weight through her right leg and has very little control of her right quadriceps, if any. We had Janet stand with each foot on a scale and she was putting about thirty pounds on the right leg, all the rest of her weight was through her left leg. Tez believes confidence is a huge part of this issue and has developed some exercises to help build strength in that leg and therefore confidence. For the next few weeks there will be no long walks but a lot of standing, Shuttle, bike and stretching work with the focus being on the right leg. The bike rides will consist of a warm up period using both legs followed by pedalling with only her right leg. Same on the Shuttle combined with everyday use of the Standing Frame and lots of free standing as on the scales. Jess joined us in the gym later and showed me the new mat exercises for Janet. Both involve “bridging” which forces Janet to activate her quads. These can be done at home too as can the standing of course.
That was a full morning so to give Janet a break I brought her home for lunch before her doctor appointment this afternoon. Her transfers in and out of the car with the AFO were excellent and I can sense Janet is more confident in those situations. The doctor visit was good with no major issues to discuss and Janet will return in March for a full check up, something she hasn’t had since well before she got sick.
Back at Connect Janet was determined to get her exercises over and done with so foregoing a nap it was off to the gym she went. After a warm up on the Shuttle, Tez popped in and coached us through what he’d like Janet to do on that machine. It was a huge help and a real eye opener to see just how little Janet has been using her right leg. I’ve always supported that leg while she’s worked on the Shuttle and realized today that that was enabling her to use it in a way that circumvents the quadriceps. Tez agreed that no support and the minimum weight is the way to go now and to try and force Janet to use those muscles. She had a very solid workout and I think will actual enjoy the Shuttle more using it this way. Next up was the Standing Frame and although she was visibly tired, Janet stood nice and straight for forty five minutes. After dinner we were back in the gym for some one legged bike riding. Again, we are back to basics here, at the lowest level and with me assisting on the upward part of each revolution. Janet didn’t enjoy this ride very much and I think measurable goals will be hard to show her for a while. I hope she hangs in there.
Janet was eager to read Open tonight and we were able to YouTube another scene out of the book to bring it to life again. Very cool. She didn’t last long watching tennis tonight after a physically demanding day. Praying for a deep and healing sleep tonight and a productive day tomorrow.
Renovation Day 5 was a dusty one as Randy was mudding and sanding drywall repairs from the electrical work we had done and the two walls that were removed. The best part of my day was pulling staples and nails from the floor in preparation for installation of the new one. Janet and I brought home a sample of the new floor to see what it looks like in its natural environment. Pretty cool,I think.
Jen from Connect delivered Janet to her doctor’s appointment this afternoon and I met them there. This was a routine check up and I didn’t even have a list of questions this time as medically Janet is doing fine right now. I let her discuss things with her doctor, only stepping in if she gave inaccurate info and that only happened a couple times. Janet is concerned about her perceived lack of sleeping at night and the doctor suggested trying to stay in a routine of going to bed at the same time each day and getting up at the same time each day. Apparently that helps regulate your Circadian Clock and may explain the difficulties Janet was having on Tuesdays when she was home on weekends until Monday night. She was going to bed way later and getting up way later than at Connect so when she does finally get a chance to come home I’ll make sure she stays in a more regular routine. This was a great visit to the doctor as Janet did most of the talking for once and handled herself very well. Afterwards she told me she likes her doctor as “she’s very approachable”.
Janet was a big help in choosing the colour for our new blinds today and also in picking out a kitchen faucet. We were quite picky about what we wanted as it has to be something Janet can comfortably use so the guy at Splashes really had to work to find the right thing. Good job!
By the time our shopping was done it was time to get Nash and figure out dinner. Janet wanted pizza so we decided to try Papa Murphy’s and were pleased we did. Janet helped bake the pizzas at Connect for us and both kinds we tried were yummy. There was lots of chatter going on in the dining area tonight and Janet enjoyed the activity while we ate then she helped me clean up by wiping the table and putting stuff away. She was getting very tired but her drive to be productive kept her going until 8:40 when she called bedtime thinking I would read to her for half an hour. She lasted five minutes before snoring.
Praying for a good night’s sleep and lots of energy for tomorrow.
What an exciting day! I knew today had potential and I couldn’t be more happy with how Janet was from start to finish. It wasn’t all ups but there were enough of them to make this a stellar day and judging by the big grin on Janet’s face as I said goodnight she is satisfied with what she did too.
I arrived in time to get her ready to go to KGH Rehab for her session in the pool. She was waiting for me in the living room with a big smile and I could sense she was a little nervous about the swimming thing. Excited but nervous. She took a while on the toilet before we left so instead of being all pool ready underneath her clothes we would have to get changed there. I should have expected the next delays as the hallway to the pool goes right by the rehab gym so Moira and Rob both came running over as soon as they saw Janet and the reunion was on. Janet kept saying she didn’t remember any of the area or the hospital as we approached but as soon as she saw Moira her face lit right up as it did for Rob. I think that gave her a nice confidence boost for the task at hand and she didn’t seem nervous about the pool at all after that. Moira guided us to a bathroom we could change in but it was locked then I remembered one in the other hall so we went there and donned the swimming attire. There are change rooms in the pool area but the only private one was in use and pool guy, Jim, was nowhere to be seen. He saw fit to chastise me for using the washroom we did and told me to make sure we stay in the pool area to change afterwards. He seemed nice when we talked on the phone but after encountering him in person today I think he’s a bored man that needs to find something more challenging to do. I transferred Janet into a waterproof wheelchair and we walked out onto what would become the water. There’s a biblical joke there somewhere. Anyone? Jim gave us a small inner tube so Janet could float and then lowered the floor. Janet started floating long before the floor maxed out and it was very exciting to see. She was smiling and laughing at the sensation and was very relaxed and “at home” the whole time.
I only knew what Tez wanted me to do with Janet as far as exercise goes and Jim just said “float around, get used to it”. Janet was used to it in two minutes so I had her try kicking her legs. That was tough at first especially as her right leg was drifting over her left one which was bent back at the knee quite dramatically. The more time we spent in the pool the more Janet loosened up and for the last ten minutes she was kicking and propelling herself through the water. She instinctively started using her left arm to paddle as well and looked totally at home doing it. I tried standing with Janet a few times. Each attempt was better than the previous and involved her touching bottom with her left foot and me guiding her right to where I could step on both feet and hold her down. I then straightened her lower back slowly and could feel her hips and pelvis move in a way I’d not noticed before. Everything felt more relaxed and Janet said she felt good, no pain.
Our thirty minute session was over super fast and Jim showed us the correct change room to use. Janet was cold as soon as we were out of the pool so good thing I brought her large beach towel to wrap her in. On our way out we went through rehab and stopped at the nurses station where a gaggle of nurses marveled at how good Janet looks. One nurse who worked with Janet on 4b actually started crying when Janet smiled and loudly said hi to her. Awesome moment.
The pool experience deserved a reward and Janet agreed ” it would be nice” to go out for lunch so we went to Original Joe’s and had a very civilized long lunch date. That cut into Janet’s nap time which she protested all the way into bed but was snoring three minutes later. Unfortunately I had to wake her forty five minutes after so we could get to her doctor’s appointment. We made some minor changes to the Dilantin dosage, capsule form instead of liquid, and she has sent a referral into the neurologist. The constipation issue has obviously been resolved but I asked her to instruct us as to how much fluid Janet should be drinking in a day. She pointedly said to Janet, one cup before and after each meal at least. Try to get two more in there somewhere but at least those. I hope hearing it from her doctor will help motivate Janet a little more.
It was just us for dinner by the time we got back to Connect but Garrett and Bob hung around to chat a little then Jess and her little niece came by to encourage Janet to come up to ladies night. Bad timing today but hopefully next week. Janet happily put her laundry away and helped me make her bed after watching a little March Madness. She very contentedly lay down in bed a little earlier than the last few nights after a busy and fun day. This was the Janet of three weeks ago that had Mary Lou all excited about her speech potential. I think as long as the Dilantin levels don’t rise Janet has a good chance of really advancing from here. Praying for a good nights rest and an equally bright and energetic day tomorrow.
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.
I thought yesterday started early, today started at 5:45. Janet woke up in pain making small child birthing type noises. I thought maybe she was constipated so after she told me that’s where she hurt I focused on treating for that. No luck, not that there’s much I can do here for her but at least she was comfortable sitting on the toilet as opposed to laying down in bed. We made trips back and forth and by eight o’clock with Janet propped up to a sitting position on the bed she fell back asleep. I debated taking her to the hospital wondering if it was something other than constipation but each time I almost made that choice she would seem much better and I would stick to the needing to go but can’t go scenario. Her last real movement was Wednesday night and a little Thursday, questionable for most of us but pretty typical for her. I called Connect and spoke to Jess. She offered a suppository if I brought Janet back there and said it was my call whether we went to KGH or not. I didn’t want to go there if all Janet was suffering from was constipation as we could fix that at Connect.
Janet woke up a little after ten and in discomfort but not as severe as earlier. We tried the toilet again with no luck. I called Jess again and said we were on our way. While finishing getting Janet dressed I noticed she was acting very much like she was during the Dilantin overdose. Not speaking well, low energy, just seeming really out of it. As long as she was sitting up she said there was no pain and that made me wonder more about the constipation theory so I decided to head for KGH where we could at least see a doctor. On the way I remembered a walk in clinic close by that Janet had been to before so we went there thinking it would be faster. It was but unfortunately the doctor was unable to confirm any condition that Janet may have as he doesn’t have enough history on her and she is unable to communicate her symptoms. He ruled out another bleed or “anything weird like that” and suggested trying the suppository first to see if that reduces the symptoms. He also hinted at bladder infection and suggested getting a urine sample to the lab tomorrow.
Janet was very sleepy while waiting for the doctor then snapped to life when he came in. She hung in there well for the first half of the ride to Connect then got uncomfortable and cried a little. By the time we got there she was fine and I was able to lay her on her bed so Jess could give her the suppository. She slept for over an hour after that but did not produce the desired result. She did however seem to be feeling much better. She almost angrily agreed to go get something to eat and devoured a sandwich and bowl of soup that Bob made her. A really good sign. She was quite bright for about two hours after waking, talking a little and drinking a cup of water as I nagged her along. By 6:30 she was ready for bed and I noticed more signs of a Dilantin overdose. Confusion, brushing her hair with her toothbrush as an example, and poor speech along with a rapid decent into sleep. The good news is she was able to go to sleep on her back, something she hadn’t been able to do all day.
As I look back on the day I am pretty confident that Janet’s Dilantin levels are out of whack still and the cause of her problems today, possibly enhanced by low water intake or a bladder infection or maybe a little cold. She is technically constipated but she pretty much always is and has never displayed symptoms like this before. Her BP and HR and temp have been fine all day so I’m not worried about anything major and the staff at Connect are checking on her hourly all night tonight. We “refused” the dose of Dilantin scheduled for tonight and if her doctor doesn’t like that, too bad. I expect an interesting conversation with her tomorrow.
Janet seemed the most comfortable she’d been all day when I left her tonight even giving me a nice smile as I kissed her goodnight. I pray for a night of deep rest and healing with lots of energy and answers tomorrow.
Janet was waiting in the Connect living room for me with a smile on her face. She knew we were going somewhere but wasn’t sure where. Jess told me they let Janet sleep in until after nine as the night staff reported Janet was awake at 2:30 and again just after five. Janet told me she ate a good breakfast and was ready to go.
Her doctor and I were both shocked at the high level of Dilantin in her system and the doctor is very confident that all the symptoms I brought to her attention are from the excess of Dilantin. Good news I guess. My suspicion is that there was a mix up in the conversion from liquid to pills and instead of the moderate increase the doctor ordered last time Janet actually got a fifty percent increase. Not sure if the error was with the pharmacy or in the doctor’s orders but something went wrong somewhere. To be safe, I agreed to have Janet go back on the liquid form until we get the right dosage then we can talk carefully about what that looks like in pill form.
Janet was quite drowsy today, even nodding off in the doctor’s office. After that appointment we had a quick lunch next door then met our realtor to look at a couple condos in the same building as the doctor’s office. Neither were to our liking but it was good to have a look.
I offered Janet the choice of a nap at Connect or home, she chose home and went down for a two hour snooze as soon as we got there. All that sleeping meant we only had time for a quick dinner then it was back to Connect for bedtime.
Everyone I’ve spoken to today is confident Janet will snap out of this pretty quick now that we know she was overdosed on the Dilantin. I expect a much improved Janet after a good nights sleep tonight and am praying for such.