Recovery

Important Announcement. #TSJ

After a full year of daily updates (sometimes multiple updates a day) on Janet’s progress I am switching to a once a week format.

Janet continues to make progress and I have high hopes for the future. I think you can all appreciate from what you’ve been reading lately that most days are pretty routine and somewhat repetitive. Therefore blog updates will be published every Wednesday evening and as events warrant.

I will Tweet on a daily basis, with pictures and video, so if you wish to stay in touch up to the minute, follow me at @larrylatour In fairness to my Facebook friends, Twitter updates will no longer be posted to my Facebook account so my newsfeed will be much cleaner.

Those of you reading updates via email only will still receive the weekly updates and any special posts but will have to follow me on Twitter if you want more.

I thank you all for your continued support and hope this new format provides you a more interesting read.

Anniversary. KGH revisited. #TSJ

Janet was at it early this morning working out with Tez doing some standing and walking at the parallel bars. Janet still says it’s difficult but she isn’t quite as emotional about it all as before. She still has not had a BM even with the Peg-Lyte so nurse Jen recommended a trip back to ER and that was suggested by Janet’s GP as well. I had hoped to delay the return until tomorrow in part because today is the one year anniversary of Janet’s aneurysm and the last place I wanted her to be was the hospital. However it was the right thing to do.

Lorne took Janet from Connect to KGH and I met them there, saving me a trip out there and back. Janet was in good spirits and seemed OK with the idea and prepared to wait. The ER wasn’t nearly as busy today so I had high hopes we’d be in and out pretty quick. Last time was five hours, today two and a half. Dr. Eppler saw Janet today and he confirmed that it was good we brought Janet back in but at the same time he wasn’t ready to bring out the dynamite yet. He consulted with Dr. Agnew, the GI, and he recommended a drug that Dr. Eppler had never heard of and the KGH pharmacy didn’t have in stock. He seemed super confident in it though and also ordered Janet to be on a slightly different formulation of the Peg-Lyte she’s been drinking and that should help Janet stay regular once she gets cleared out. He gave Janet a dose of it as we left and she drank it quickly on the way back to Connect. The plan now is to try this new drug along with the new Peg-Lyte and if there’s no result soon Janet will go back to the ER for the dynamite treatment.

It was dinner time when we got to Connect and Janet ate heartily. Not sure where all the food is going but she seems fine. Garrett negotiated a bike ride from Janet afterwards and she performed her best ever. The deal was more than twenty minutes but less than thirty. I went in to see how she was doing and she just eclipsed the twenty five minute mark. I didn’t let her know I was there and she continued until she went over twenty eight minutes. Garrett and I showered her with praise hoping it sinks in that she is improving. The praise continued as Janet took a much needed bio break and produced a very small BM. Something is better than nothing and I credit the long bike ride with moving things along a little.

Janet was quite insistent that the rest of the evening be fun and she elected to lounge while watching basketball in the living room. That was a perfect way to end another busy yet productive day for her.

I thought about a lot of different ways to acknowledge this anniversary. A video timeline or a re posting of key events along the way. A photo montage showing the very obvious progress Janet has made or having her say stuff on camera today. As I thought about it and talked about it with her it became clear that celebrating this day would be inappropriate. Janet still gets very emotional thinking about the past year and even though she doesn’t remember much it still brings tears. I don’t want to generate more tears. I also realized that the anniversary probably means more to those of us who have been alongside Janet during this journey than it does to her. So in that regard I want to thank all of Team Save Janet for your continued prayers, visits, virtual visits, care packages and words of encouragement. Janet and I would not have managed to get this far this well without all of you. Looking back at how much has changed in the last year I have nothing but optomism for what the next year holds. God continues to place the right people in our lives at the right time and through His grace all will be well.

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Walking Tall 2. A stand up day for Janet. #TSJ

Janet’s day got off to a busy start as Tez got her into the walking sling as she stood at the parallel bars. He showed me some video of their session and I can see why Janet said it was very difficult. She was doing all the things we do in the pool but without the support of the water. The sling supports her of course but it’s a totally different sensation, much more real I think. Janet did very well and hopefully will use this as a way to realize how well she is doing.

I got to Connect this afternoon just as John was wrapping up his sing along session with Janet. They both seemed to be having fun and they gave me a little demonstration before calling it a day and Janet was certainly taking a leading role and singing well but she still needs to turn up her volume and keep her throat clear. It was nice to see her smiling as she does with John.

I convinced Janet to have a little nap after her sing along session as long as I stayed in the room with her. She didn’t sleep much and each time I tried to sneak out she opened her eyes so after an hour I just got her up. It was time for our meeting with wheelchair man anyways so off we went to meet Brian and Jared. It was a very productive meeting with Jared making what I think will be some of the last modifications to Janet’s chair before we strike a deal to buy one. The improvements were noticeable right away as Janet was able to clear some bumps she had difficulty with previously.

Next up was the weekly Skype chat with Mary/Gaga then a trip to the kitchen to see how dinner was doing. It was well under control so Garrett invited Janet to the gym for a bike ride. I think we’ve made a little progress as far as Janet’s willingness to go to the gym goes. She was quite adamant at the start that she wasn’t going but after being reminded that the bike is helping make her legs stronger she agreed to go “as long as that’s what it is”. I’m hopeful she is starting to realize what each exercise does for her and that should help her see the benefits of each more clearly. Garrett reported a successful ride with Janet’s goal being twenty minutes and she stopped on her own at 20:09. She’s smarter than we sometimes think.

Rather than put her in lounging mode after dinner Garrett brought out the standing frame and Janet was able to stand pretty nice and tall for more than twenty minutes while watching some basketball.

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There is a Keek of me “walking” her where you can get a better idea of how she’s standing. @larrylatour Her habit of staying up late has not diminished at all and she was quite alert as we watched the election results with Bob and Garrett until way past her recommended bed time.

The biggest concern with Janet right now continues to be the lack of bowel movements. It’s been over a week now and the Peg-Lyte clearly isn’t having an effect at all. If nothing happens by Thursday morning I’ll take her back to the ER so they can dynamite her.

Praying for a good sleep tonight, success in the bathroom tomorrow morning and lots of energy for an active Wednesday.

Water Baby. Lots of pool time for Janet. #TSJ

Janet must’ve known it was Monday as she was in no hurry to get up this morning which normally would be OK but we had an appointment before swimming today so up she had to get. Her right leg on the other hand stayed asleep most of the day. In the pool it was doing its own thing most of the time despite a real effort from Janet. She did manage some good balancing and floating and over all both pool sessions were worth the trip. Even more worth the trip was a reunion with nurse R J as we passed by the Rehab nurses station. He was very excited to see Janet and could not believe she was talking to him. He was as excited as a little kid on Christmas morning and Janet thought the whole thing quite funny.

Unsure of what to do for lunch and with Janet announcing she had to go to the bathroom once we were in the car, I decided to take her home for the bathroom break and a quick lunch. I really need to stop referring to meals as quick with Janet as they never are. It was three o’clock by the time we were done and Janet was clearly getting quite tired. She would have nothing to do with the idea of a nap either at Connect or home but I offered to lay down with her and she accepted that. Asleep within five minutes and still sleeping at 4:30 I called Connect to say we’d be back after dinner. When she woke up after five Janet was refreshed and totally up for a hot tub. That warm water worked its magic on Janet again as I was able to get excellent stretches on both legs and some good work on her right arm and shoulder. With the cooler air temperature and the fact we weren’t in the overheated pool before going to the hot tub we were both able to stay in longer than yesterday and Janet was very relaxed when we got out. Her right leg seemed a little more responsive towards the end of the session and while doing some squats I could feel that leg working a little. Janet later executed some really strong standing transfers that I think even she was happy with.

No longer rushing to get back to Connect we had a good Skype chat with Andrew then a decent dinner before making the half hour drive to Lake Country. Bob had a good basketball game on when we got there so we stayed up too late and watched that but Janet wasn’t really that tired until the end. Regulation time ended at around 9:15 or so and I tried to fool her saying the game was over but she knew it was going into overtime and so she got to watch the whole thing.

Lots of time in the water today, a fun reunion with R J, a nice chat with Andrew and an extended stay at home made for a fun day for Janet. Praying for a good night of sleep and healing and a productive day tomorrow.

Mother’s Day. An emotional day for Janet. #TSJ

Mother’s Day. Janet and I don’t usually make much of Hallmark holidays but I sensed this one would be special for Janet and it was. As we were finishing breakfast I read, or at least attempted to read a poem written by Laurel and emailed to Janet this morning. Laurel really should know how difficult it is for me to read sappy things like that and when Janet started crying five words in, that was the end of me too. It seriously took me twenty minutes to read fourteen verses to her in between the watery eyes and running noses. I tried to laugh through it to get Janet to laugh but no. Tears tears and more tears. And that was just the start of our day.

The service at Trinity was of course designed to honor moms and following a very entertaining take on Queen’s Bohemian Rhapsody, the message was delivered via a table discussion with four next gen members of our church. They told stories of what it was like growing up in their homes and some of the comments resonated deeply with Janet and brought more tears. The comments that really hit her were about values and practices that Janet always fought hard for as a mom and to hear them validated by a group of young people was very powerful. She was still in tears long after the service ended and it took a visit from Kiko and Joel to cheer her up.

At home the Skype marathon began with Cam who we have not been able to connect with for a while. Janet was surprised that he remembered it was Mother’s Day. Heather was next followed by a voice call to my mom. Determined to avoid a nap Janet agreed to go for a swim and a hot tub. Knowing the Rehab pool is 36C I brought ours up to 32C hoping Janet would be comfortable. I think there’s something wrong with my thermometer because that 32C felt more like 52C but Janet of course loved it. I quickly learned that I need some different exercises for our pool as its only three feet deep in the shallow end and slopes dramatically to the deep end so there’s not enough water to work with in one end and too much in the other. Janet did manage to float on her back all by herself for five seconds today even recovering twice in that time when her face dipped below the surface. Next time the water will be cooler and I’ll have a better routine for her.

The hot tub’s 38.7C felt cooler to me than the pool I think because its supposed to be hot where I’ve always liked the pool to be refreshing. Once again I got a really good stretch on both Janet’s legs in the hot tub and set her up nice for a long lounging session this evening in her wheelchair. That came after a Skype chat with Laurel who apologized for the tears this morning then a voice call to a surprised Mary/Gaga.

Dinner was take out from our go to sushi place where Brian and his family were having dinner when we got there to pick ours up. Brian went out to see Janet and she identified him as Gary. When I got back to the car she told me Jimmy came to say hi to her. Oh well.

Janet was determined to watch The Voice with me tonight and I could see her fighting to stay awake for it all. She managed barely and was asleep before I finished our goodnight prayer. Today was an emotional day for Janet. It was also one of those days where you look back and think it was really busy but it seems like you didn’t do much. What we did do was great though. We are proud of our family, blessed by our friends and our church and grateful for the progress Janet is making. Praying for a healing and restful night providing lots of strength for tomorrow.

Spring Fling. A fun in and out of the sun day. #TSJ

Today was Spring Fling day at Connect, the brain child of staff member Jess, and what a great idea it was. Technically it is Spring but we continue to enjoy summer like weather here, so much so I’ve had to resurrect Janet’s sun hat from last year. She still looks cute in it. She was also cute with her shirt saver on and a flipper in her hand as she helped Jess make pancakes for brunch this morning. For some reason she didn’t think I was coming to see her today and I’m not sure that she was upset about that at all. She seemed to be having lots of fun without me. Jess does a great job with Janet, always making sure she’s busy.

The staff set tables up in the parking lot and hired a guy to play guitar and sing while everyone enjoyed the sun and food. It was really nice to have all the residents and staff together with friends and family in a really positive environment. The highlights for Janet besides making pancakes were meeting Brian’s baby daughter Olivia and playing ladderball with me. There’s a Keek of her excellent throwing abilities. @larrylatour

By the time the Fling was over it was after one which meant either a nap then shopping and stuff or shopping and stuff then a nap. Janet of course chose the latter hoping to avoid the nap all together. She actually nodded off a little in the car on the way to the mall. Yes, the mall again. I realized we should have bought her a few more shorts when the girls were here as she doesn’t have any at home and I also wanted her to have a pair of sandals. After quick and successful stops at The Gap and Urban Trail we were headed home for a quick nap. I would have been happy with Janet resting for an hour or so then getting up for Church and a sushi dinner. She exceeded expectations and slept for over two hours which meant no Church and no sushi. We BBQ’d salmon instead, enjoying it outside then I got Janet into lounging mode while we watched Silver Linings Playbook which we both really enjoyed.

It was definitely late when I got Janet to bed but after her late nap today she did just fine and should have a good sleep. She continues to show improvement cognitively, saying some really intelligent and unsolicited things today. On the physical side, I’m not liking her left leg right now but will at least get her in the hot tub for a stretch tomorrow and see if that improves things. Janet drank all her Peg-Lyte today with no results yet. Sunday was her day last week so here’s hoping. Praying for a good sleep tonight and continued healing.

Waiting Game. A bit of a long day again for Janet. #TSJ

All reports this morning had Janet feeling good and not bleeding. She showered and ate breakfast and seemed ready for action. Apparently Connect has a policy whereby they cannot administer anything to a resident without a doctor’s prescription or order. The Peg-Lyte I was given at KGH yesterday did not come with any paperwork so the staff were unable to get Janet started on it this morning. Lorne volunteered to take Janet to the nearby walk in clinic to get a doctor’s note and over two hours later they returned. Successful but only after waiting a ridiculous amount of time for something as silly as that. In the last two days Janet has spent over seven hours waiting and it clearly affected her. She was hungry when she got back to Connect and devoured an apple as it was too close to dinner for anything else. Happy hour consisted of her first 480ml glass of Peg-Lyte and I have to praise her for drinking it as fast as she did. There were lots of funny faces but she was persistent and had an empty glass a half hour after starting. High five!

There was no immediate effect from the Peg-Lyte except for a boost in hydration. I don’t think Janet’s ever drank that much of anything that fast. It may have affected her head as well because she agreed to go to the gym and ride the bike before dinner. When we got there she was surprised that she was getting on “that bike”, she said her bike “is out there somewhere”, pointing outside. I got her set up and she ended up doing about twenty two minutes with a few stops along the way. Considering the day she was having I thought she did very well.

It’s Derek’s birthday today and he requested a roast beef dinner complete with Yorkshire Pudding for dinner tonight. The Yorkshire Pudding was a challenge for the staff but they pulled together and got it done. Janet enjoyed it as much as Derek did but the highlight was the cake Jess made. Yummy. I’ve been asking Janet if she wanted to try standing at the parallel bars for a while now, always getting a no. Tonight she agreed as long as I did it with her so up to the second floor we went. I demonstrated what I wanted her to do, which is pull up perpendicular to the bars, plant her feet, scoot forward in her chair and use her left arm to pull herself up to a standing position. She needed a couple of attempts and a kick start from me but on the third try she was able to stand pretty tall and with me barely touching her to keep her from falling backwards. I could really sense the effort in her legs that time and for once she didn’t cry when she accomplished something. I’m going to try and do this everyday with her now.

After all that it was time for lounging to watch some basketball. Janet’s right leg remains nice and loose but I sense an increase in the tightness of her left leg. Could just be the lack of activity the last few days so hopefully we can hot tub at home and hit the pool on Monday to get her going strong again. All the talk around Connect is about the Spring Fling tomorrow but Janet is still not sure about the whole thing. Jess promised to put her to work helping with pancakes in the morning and I know Janet will like that. Praying for a good sleep tonight and lots of energy tomorrow.

Lack of Movement. Tough day for Janet. #TSJ

Garrett was helping Janet off the toilet when I arrived at Connect this morning and toilet talk would dominate our day from that point on. On my way to Janet’s room Lorne informed me that they had noticed a little blood in Janet’s pad when they got her up this morning and then a little in the toilet when they put her on there first thing. They did a quick check and asked Jen to look as well and it was determined that it was something to keep watch of but not a huge concern right now. Janet was in good spirits and not complaining of any pain at all. Off to the pool we went with a plan to return to Connect as soon as possible so Tez could work with Janet at the parallel bars.

We always get changed in the only washroom in the KGH Rehab Pool area and I sit Janet on the toilet while I change her partly to give her a chance to pee before swimming. We got all changed and I waited for her to try and pee but it was a no go so I stood her up to pull up her shorts and noticed blood in the toilet along with a very small stool. Janet was feeling fine and had no idea what was happening, there was a drip of blood every ten seconds or so and nothing else. I cancelled swimming got her dressed and called her GP. She of course was booked solid all day and suggested a walk in clinic or the ER and since we were already at the hospital we went over to the ER. That turned out to be a good decision and five hours later we were out with a prescription for a stool softener, one that works apparently, and a jug of Peg-Lyte, a colon cleanser. The doctor that saw Janet had an abdominal X-ray done and that showed everything as it should be except for a lot of stool build up, hence the two parting gifts. He also ordered a colonoscopy as soon as possible as the blood is coming from inside somewhere. He gave no indication as to what may be wrong but at the same time didn’t seem overly concerned and said Janet can carry on with normal activities unless the bleeding increases. Then he would want to see her back in the ER.

Janet was a phenomenal patient today. Staying awake the whole time and not complaining at all. I kept giving her sips of water even though there are signs all over the ER saying no food or drink until you’ve seen the physician. We didn’t get any food at all though but I think I felt that one more than Janet did. Janet was asked her birthdate by a lady taking a blood sample from her and she said it loudly and correctly right off the bat. I was impressed by that and by a few comments she made along the way like, “you must be getting tired of waiting here” and “Isn’t the doctor supposed to come and talk to us now?” She is a real trooper.

At 5:15 we were in the car (no parking ticket surprisingly) and calling Connect to let them know we were on our way back. Bob had held off cooking Janet’s salmon so ten minutes after arriving she was eating a nice meal. A few minutes into it she asked to go to the bathroom and had her first of two small bowel movements of the evening. There was blood associated with both but not any that was constantly dripping and Janet is not in any pain at all. She finished her dinner and an orange then half ways agreed to go for a bike ride. I really insisted on trying that as she had been sitting all day and we missed the pool and the workout with Tez. I didn’t push her at all once on the bike as it was late and it had been a long day. She still managed sixteen minutes of pedalling at mostly thirteen rpm. High five!

Surprisingly she wanted to read before bed so out came Slow Dance and into lounging mode went Janet. I read while she sipped water and wound down. By the time I turned out the lights it was 9:45 and Janet was finally ready for sleep. That was a tough day but I’m confident we will now get some good answers as to what’s going on or not going on with Janet’s bowels and hopefully start on a path to improving that situation. Once again the staff at KGH could not have been better (a little quicker perhaps) and we continue to get good support from the team at Connect. Praying for a restful night for Janet giving her the awareness to drink her two cups of Peg-Lyte tomorrow morning and to have a much better day than today.

Reluctant Progress. Janet grins and bears it. #TSJ

Tez had Janet in the standing frame again this morning and by all accounts it went well. Mary Lou did her usual Speech session with Janet as well and after some negotiating with Jess, Janet agreed to have a nap. She says she didn’t sleep but Jess checked on her an hour in and she was snoring away. By the time I arrived Janet was watching TV in the living room and seeming quite happy. She had trouble telling me about her day but with some prompting got the major points out. She did know she was watching Dr. Oz and he was talking about Aspirin. High five. I told her some good news from Dr. McCann’s office that I got this morning. I had given a report on the effect of the Botox and also mentioned I had not noticed any negative reaction to Janet being on a lesser dose of Methylphenidate for the last three weeks so he agreed to discontinue it all together. One less pill for Janet to swallow!

I took Janet out in the sun for a walk before our first order of business, the weekly Skype chat with Leslie. We walked around part of the neighborhood we have not explored yet and agreed we don’t want to live there. It would have been nice to stay outside to Skype but the wifi connection was too slow so we had to go to Janet’s room. Before we could get back out Garrett offered to take Janet to the gym to ride the bike. I was disappointed that Janet fought the invitation the way she did. I felt she did really well yesterday and that she seemed very comfortable on the bike. As the argument progressed it became quite apparent that Janet is really lacking confidence in doing the gym activities. She feels she should be better than she is and doesn’t see the progress she’s making. The great thing about the bike is it shows you exactly how you are performing and once Janet reluctantly agreed to go, Garrett and I were able to show her the numbers to watch. She made a steady twelve rpm for twenty two minutes today. We didn’t measure yesterday’s session but today’s seemed better and Janet was reasonably happy afterwards. I don’t want her to focus too much on the numbers as some days will be better than others, today was better but I got a sense she was being obedient rather than fully participatory. We’ll see how it goes tomorrow.

The bike ride definitely gave Janet a boost of energy and appetite. After dinner we went for a walk to Beasley Park and watched the last twenty minutes of a soccer game. It was really nice sitting in the sun doing that but it was hard to see as the grandstand is on the east side of the fields and at that time of day the sun is shining right in your face. Still lots better than watching soccer in the North Vancouver rain like we used to.

Janet wanted to read when we got back to Connect and we got a good chunk of Slow Dance done. Almost finished. My cousin Sharon, shared a video with us that features a really cool bike that I could use with Janet. More importantly the video is a beautiful story of love. Janet and I both teared up watching it. Your turn.

Praying for a solid night’s rest and an energetic tomorrow.

She’s a Real Stand Up Kind of Girl. A day of successes for Janet. #TSJ

Today was one of those days where everything seemed to go right for Janet. It started this morning in the gym with Tez, Joel and Lorne.

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That’s Lorne with Janet as she stands in the standing frame for the first time at Connect. Tez was pleasantly surprised at how well Janet can stand and weight bear through her legs. She is really improving in that area thanks to her hard work in the gym and the Botox. Tez even had Janet standing on her own, balancing herself with her butt up against the edge of the table mat. I’m really impressed by that one and will credit the work in the pool with helping her to figure out how to do that. Lorne took Janet for a walk outside in the standing frame so she wouldn’t get bored as Tez wanted her in there for twenty minutes or so. I remember seeing Fred and Chris use this apparatus and hoping Janet would get a chance one day. I didn’t expect it to be this soon.

I had a good chat with Lorne, Jess, Tez, Brian and Joel when I arrived this afternoon and everyone seemed excited for Janet’s achievements with Tez wanting her to use the bike this evening as he believes she’s ready for that. He recommends keeping the pool sessions going and trying to get Janet into our hot tub as much as possible. They are two different types of therapy and Janet will benefit from both. To simplify our schedule I will see if we can change the Thursdays to Fridays so we can just go home from the pool. Jess said she put Janet to bed amidst much protest over an hour earlier so I quietly entered her room to see how she was and this is how I found her.

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Not exactly Houdieno but if she starts believing she can walk, watch out!

Janet was in a very good mood as she gave me her account of the day. She still downplays her achievements but not to the degree she has in the past. Tez stopped by to show me how well she can stand using a slightly different technique than I was using. It gives more responsiblity to Janet and Tez suggests doing it as an exercise a few times a day.

We made it outside for happy hour and a Skype chat with Mary Gaga. Garrett then suggested Janet go to the gym to try the bike before dinner and Janet accepted with no argument at all. There is a Keek of her first pedals, @larrylatour, and as you can see in this pic she was quite comfortable on the bike and had a really good first go at it.

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Ideally she’d be able to pedal without the arm assist but for this session and probably the next while she will need it. I reminded her it’s not that different from the elliptical machine she used to use but she says she doesn’t remember that. As well as she did on the bike Janet didn’t seem all that impressed with herself but hopefully her attitude will improve with some more successes.

After her bike ride Janet BBQ’d herself a couple pieces of steak for dinner and gobbled them up along with her first corn on the cob in over a year. She loved it of course. We then had a little Skype chat with Andrew before reading some Slow Dance while Janet lounged in her wheelchair. I turned the lights out on a very content Janet tonight and pray she has a good night’s sleep and is ready for an active day tomorrow.