Houdieno was awake and resting her head on the right bed rail when I returned at two. We just had time to stretch before the cleaner came in to do a “terminal clean” of Janet’s room post C diff. We headed for the sunshine and Janet was reluctant to drive her wheelchair I think because the hallway was quite busy. At the elevator she pulled off another unassisted button push and off to the beach we went. Since we had an hour and a half before her room would be ready I decided to take Janet on a bit of an adventure. We discovered a street (more like a laneway but actually a street) close to the lake that went all the way to the highway right at the east end of the bridge. Lots of new things to look at and a warm summer afternoon to enjoy. Janet seemed very comfy and content and was taking in as much as she is able. She felt so good that she even rolled up her right hand sleeve to expose more arm and a little shoulder for tanning. I pulled up the left one to match as you can see in the picture. I was a little slow to snap as she did have a little smile and was looking at the camera just prior to this. Sorry. An hour and a half later we entered the Centennial Building and I hoped Janet would try and break her distance record. I got something better. I asked her if she wanted to switch glasses like I always do when we get back inside. She did so quickly as she usually does. I then asked her if she wanted to drive. There was a look and I’m pretty sure a shake of the head no. I wasn’t believing it at first so I put her hand on the wheel or at least tried to, she resisted, and put her hand back on her lap. I’m pretty confident there was a head shake no as she clearly did not want to drive. I told her how excited I was about that and we carried on. Half way down the hall I asked her again if she wanted to drive, explaining just to the doors and she did so, then promptly stopped knowing that was as far as she had to go. When we got to the elevator I barely had to ask her and she was all over pushing the up button. High five!

Our walk ended back in her room in time to get into to bed for dinner and for me to go to church. When I got back at seven Janet was awake and hugging the right bed rail. I gave her a good stretch, changed her for bed and brushed her teeth then read a chapter of Anne. She was just starting to yawn as I left for the night after getting amazing smiles and nice kisses. I don’t think she slept at all today. She had her eyes closed for five minutes while lying on her tummy this morning. Her nurse did not notice her sleeping during my break and I saw no evidence of sleep when I got back from church. I told her that was cool but I hope it means she will sleep well tonight.

I could not have asked for a better day on the four month anniversary. Janet looks great, and is showing signs of being brighter and brighter. It’s still a roller coaster and there are issues with the right side extremities and her vision but after today I’m quite hopeful there is significant progress yet to be made. That progress will come by the grace of God through your continued prayers and by Team Save Janet staying strong and active. Thank you all for what you have done so far.

Good news and not so good news with the C diff. being declared gone again. No more gowns and gloves but now Janet is back on the active list for transfer. I feel a little better about it after our visit to Cottonwoods yesterday and with the possibility of bringing her home. Probably the best part is she gets to have a shower! First one in a long time. She’s there right now and I’ll let you know how it went at the end of this update.

Janet was awake when I got in this morning and looking quite relaxed. We had a little chat and said our morning prayer, she held my hand, closed her eyes and opened them on amen. I’ve often wondered what she thought of the praying together thing as its something we only did together at meal times. I think she is liking those moments.

I got a much improved stretch out of her this morning. The left knee was still quite tight but I laid her on her tummy for half an hour and it totally relaxed. She did well when asked to lift her lower left leg up and down and when I asked her to do the same with the right one I actually felt a little downward pressure from her. Interesting.

Janet is back from her shower and despite being a little cold I think she feels good. She sure smells better. She was a little uncomfortable in the shower chair at first but fine when she came back. I thought she might fall right to sleep but she’s still going strong. I’m going to head out anyways as I’ve got to get the pool ready for closing. Sad.

Janet was sleepy when I returned around two but woke up right away. I gave her some time to really wake up then I started stretching her. She was pretty curled up when I got there so she was hard to stretch out. There is more tone in the right leg every day it seems and her right foot is a little swollen. I did manage to get that leg stretched out but I don’t think she was enjoying the workout that much. Her left leg is really tight at the knee but loosened up after a lot of work. I sat her on the edge of the bed for a bit and she made a couple really good attempts at brushing her hair. She stood up nice and tall a couple times then it was into the wheelchair and she seemed a lot more comfortable than when I had arrived an hour earlier.

Apparently she was really comfortable because she fell asleep driving her wheelchair just a few doors down from her room. We went outside anyways as I didn’t think she would go into a deep sleep but she was out for twenty minutes while we sat in the sun. Seemingly awake I decided to take her on a bit of an adventure. We walked up to Cottonwoods. Not the nicest walk but it was sunny and warm and I think the busyness of Pandosy St. and Rose Ave. were good for her. Hard to fall asleep there. When we arrived at Cottonwoods I explained what it was and that she may be living there for a while then we went in to have a look around. I headed right for the daycare but the kids were outside so we continued down the hall to the rehab wing. It was pretty quiet and I have no idea what Janet thought of it all but it did have a nicer feel to it than the hospital. On the way back the kids were back in the daycare and we stopped so Janet could look in through the hallway windows. Two little girls immediately ran over and waved and tapped on the window. Not sure if Janet saw them or not so I told her to say hi to them. She shot me a look then I held up her left arm and said say hi to the little girls. She waved at them. I could not tell for sure she saw them but she waved anyways. All in all it was worth the trek up there even if just to give Janet something new to see and hear.

Back in the room she went straight to laying down and I read her a newspaper article I thought she might be interested in but she was sleeping three paragraphs into it. Still sleeping at six I woke her up a little to get her changed for the night. I didn’t get much of a smile but I did get my goodnight kiss.

Praying for a night of healing, not escaping and a day of progress.

Houdieno successfully escaped early this morning, landing on the fall mat on the left side of her bed. This is the second escape for Janet and this one resulted in a small abrasion on her left hip. She opened her eyes when I walked in just after eight and seemed a little agitated still. She was curled up more than I’d like to see so I started stretching her out as soon as Rhonda and Diana got her cleaned up and dressed. She fell into a deep sleep before I could get to her legs so I took it easy there then let her sleep.

Dr. Sharko came in to ask about the C diff. and if a sample had been sent in. I am not aware of one being done so we are still in gowns and gloves which means Janet is still on hold for transfer. I’m letting this one play itself out. Dr. Sharko is supportive of the idea of taking Janet home and reiterated the concern that there be a large team in place. More to come on this.

Janet still sleeping at eleven so I’m out.

Janet opened her eyes as I walked into her room this afternoon. I let her wake up for a bit and had a chat with Chantelle who had some info on medical equipment suppliers for me. It seems a little premature but I was looking online and found a deal on a bed that would be good for Janet at home. Good to know there is stuff out there I guess. I explained to Chantelle my concern about what info is getting passed on re Janet’s accomplishments etc. She sympathized but it’s out of her scope of work so she promised to mention it to Wendy the Social Worker. Staying with that topic, I met with Cathryn this evening and discussed it with her. She made a good point in that I may be noticing things and mentioning them and the info may or may not get passed on but the bottom line is the Dr.’s and nurses and OT’s and PT’s have to see the behaviors and the behaviors have to be consistent in order to make it into Janet’s chart and be given any serious consideration. The goal is not to have Janet do it once in a while or only at her best time of day it has to be anytime someone asks. Cathryn did test Janet by asking her to take her hand. There was no response so I told Cathryn to use the word hold instead of take. She did and Janet reached out and held her hand. She squeezed lightly on command. Cathryn was pleased but later cautioned that it has been noted previously that Janet has performed this behavior before. Yes, but she still followed your command. Cathryn thinks it’s best we have a meeting with Dr. McCann and she will arrange for that to happen soon.

After a little stretching I got Janet into the wheelchair and out we went. Janet’s driving to the elevators was good but once again she seemed to forget how to push the elevator button and just swiped her hand across it. The beach was absolutely beautiful today and Janet sat comfortably for twenty minutes there soaking up the sun. It must have really energized her because we went for a long walk after that and she never demonstrated any discomfort, never even took off her sunglasses, which is usually a first sign of her getting restless. We came back to the hospital using the new Centennial Building entrance and Janet set a distance record for driving her wheelchair. She did the marathon course of Centennial lobby all the way down the hall to the Royal Building entrance. Well within seventeen feet of it so that means she went a good 150 feet on her own. Huge high five!!She also pushed the elevator button on her own to go back up to the fourth floor. High five!

Back in the room she again wanted to lay down right away so I got her all comfy and read a chapter of Anne to her. I manage to hold it together through this chapter and Janet was as attentive as ever. I would read an interesting line and look at her and she would look at me like “I’m listening”. At least that’s what it seems like. By the time I finished reading there was just enough time to do her mouth care, a little stretch, talk to Cathryn then say goodnight after Jen and Rhonda had changed her for the night. I found it very hard to leave tonight as some of the emotion of all this info coming at me took over and she was smiling at me the whole time I was trying to pray and say goodnight.

I hope everyone reading this will ramp up their prayers for a complete recovery and a quick regaining of the ability to speak. I also hope the Kelowna Team can get back to visiting Janet on a regular basis. Janet really does benefit from your visits and if you hit her at the right time you may even get a smile.

Praying for a restful and healing night and an active and progressive day tomorrow.

When I arrived this morning it looked like Janet had been trying to create another Code White. She had removed a pillow case and tossed the pillow on the floor, one of her booties was up near her head, one strap for her splint was missing, her blankets were everywhere except on her and she did not look happy. The girls came in and cleaned her up and dressed her and as has been the pattern lately, she fell asleep.

Just before ten she started to stir and I got a little stretching in before Tom arrived. We practiced with the sliding board which Janet doesn’t seem to like too much at all. Afterwards we took a spin around the ward in the wheelchair. Janet did fine but was not too alert but she maintained a slow and steady pace all the way around. While we were doing that, Chantelle joined us to say she has a bunch of info on equipment for the house and informed me that the team wants to meet to discuss in detail what bringing Janet home would look like. I will try and talk to her more this afternoon.

Dr. Jones came in to talk to me and started by apologizing that he had much less to say than he thought he would. In summary;
– Janet’s bleed was severe and affected her whole brain. Old news.
– There are parts of the brain permanently damaged. Old news. He tempered this with the common line, “the brain is an amazing thing we don’t fully understand and it can rewire itself.” He was not willing to try and guess what the likely permanent damage is.
-Janet has shown some progress but the critical level to reach is one where she is initiating behaviors like reaching out for a cup of water. He described that as a complex behavior that Janet hasn’t demonstrated yet. I asked about her reaching for the end rail of the bed to pull her wheelchair forward. He was happy to here that and was unaware she had done so.

Based on our conversation I am concerned that Janet has not been properly or fairly assessed. I know there was serious damage done and I’m not denying the possibility that this is as much as Janet could recover. I am with her more than anyone, even the nurses, and maybe I’m seeing things that are going unreported or unobserved by anyone else. I will ask for that team meeting and see if I can get anywhere on that angle. The last time Dr. McCann saw her was for a few minutes when she was sleeping, same with the psychiatrist. It’s not sitting well with me. Dr. Jones is a good guy and he can only go by what’s in the chart. I’m thinking maybe the chart is incomplete.

Praying for a responsive time with Janet this afternoon and wisdom as I filter the information being provided.

No code white this afternoon but Houdieno was in action when I got back. She nearly had her butt past the upper rail of the left side of the bed and was leaning up on it pretty high. Could possibly be from all the sitting on the edge of the bed she’s been doing as the position she was in is similar to where I get her to sit up from. Interesting.

I did some quick stretching with her then got her in the wheelchair so we could get out in the sun. Janet did well driving today again. I think she is quite determined to get better at it. We enjoyed a nice walk to the beach where she looked rather disapprovingly at a little brat who was throwing sand at that female duck. Thankfully grandma came along and stopped him or Houdieno may have had something to say. Actually that would have been pretty cool! On our walks I am trying to find as many interesting things for Janet to touch as possible. I’m concerned about her vision, depth perception in particular, and I think reaching out to touch things may help with that? I noticed today she was way off with the elevator button and in trying to grab flowers that were real close to her she was always a few inches to the left of where I would think you would try to touch if you saw clearly. She is becoming more confident in reaching out to make contact so that is a plus.

Back in the room she had no interest in sitting on the edge of the bed. It was left arm down and the rest of her quickly following with a look of where’s my blanket on her face. I covered her up and she got that really relaxed look on her face right away. While we were outside I kept looking for goosebumps as I know how cold sensitive she is. It was cool in the shade and she had her UNBC little zip up on but I guess that wasn’t enough. Fifteen minutes after getting covered up she was napping.

Janet woke up just in time for dinner and was quite bright all of a sudden. I was getting smiles galour and when I said I was climbing into bed with her, then did, she had a huge smile and gave what I’m calling a breath laugh. I really think she tried to laugh but there was no voice there just a couple exhalations of air. Very cute though. I decided to change the routine a little and give her a lite stretch during dinner, get her dressed for bed and do her mouth care. Jen and Corrie changed her when dinner was done and we had enough time to read chapter 29 of Anne. Janet was tuned in the whole time. Best chapter I’ve read. Anne and Diane got invited to Charlottetown for the Exhibition. It’s a very happy and exciting chapter but I found myself getting a little choked up near the end. Am I losing it?

I left Janet all snuggled into bed with a smile on her face after our goodnight prayer and kiss.

My earlier talk with Cathryn gave me a pretty clear picture of where Janet has to get to in order to enter a rehab program. Here it is in point form, no particular order, just the way it was presented to me.

– Functional improvement potential based on diagnosis and prognosis. Hope to learn more about this from Dr. Jones tomorrow.
– Medically stable. ACHIEVED
– Behavior. To allow for ability to engage in rehab program. Janet is sometimes able to engage but those times are unpredictable and inconsistent.
– Discharge Plan. A clear path needs to be seen to the future. Still too many paths Janet could go down. Time will determine this one.
– Physical Therapy. Be able to tolerate being out of bed for three to four hours a day seven days a week. ACHIEVED.
– Physical Therapy. Must have motivation to significantly improve level of functioning. Be non disruptive. ACHIEVED.
– Cognition. Capable of learning and achieving therapy change. Janet is learning but she won’t do something one day then do it the next when asked.
– Psychosocial. Agree to actively participate. Janet is inconsistent at this time.

The KGH rehab program has a maximum stay of three months and the facility at Ponoka has a maximum stay of six to twelve months. Twelve months if you are in the complex care program which is the type of stream Cathryn thinks Janet is headed for.

Looking forward to my conversation with Dr. Jones tomorrow and praying for wisdom in processing all this information. Thanking God for everything accomplished so far.

As I was locking my bike up this morning the KGH alarm went off and they announced “Code white, Royal Building, Level 4, Room 4119. Janet’s room. I immediately thought Houdieno had finally escaped! Seconds later the code was canceled and I thought maybe Houdieno fell out of bed and they didn’t see her right away and now they found her? When I got to the nurses station Jacquie saw me right away and laughed saying the cleaner’s broom handle had slipped and hit the alarm button. Houdieno was sound asleep and stayed that way till 9:20.

When Janet awoke we did our morning stretch then some sitting and standing. Big high five on the standing! I held both her arms and stood up and asked her to stand up with me. She gave it a real good try and I felt bad asking her to do something I know she can’t but Cathryn assured me it’s good to challenge her that way. I won’t do it often but if she is really bright I’ll throw something like that at her. While we waited for Tom I read a magazine article to her and then she fell asleep again till 11:30. Tom never showed so it’s a good thing I had already given her a good workout.

I met with Cathryn and will pass on the details of that conversation tonight. As far as rehab goes Janet is a long ways away. I also had a chat with Dr. Jones who promised and “good chat” tomorrow, painting a broad picture of what Janet’s future may look like. He emphasized the fact that “we will remain hopeful” and both he and Cathryn are onboard with the idea of bringing Janet home.

Time to head back. Praying for an active afternoon.

When I returned this afternoon it was clear Houdieno had been in action as Janet was lying almost half way onto her tummy on the right side of the bed with her left arm hanging over the bed rail. She was sound asleep after what must have been some solid attempts at escaping. She woke up a few minutes later and I let her come to for a while before stretching her. After a little stretch I figured she was awake enough to call her mom. At one point while Mary/Gaga was talking to her Janet had a big smile on her face and made a movement with her lips like she was trying to talk. I saw that a couple times today. It was then into the wheelchair for some inside touring as it was a little cold for her outside today. Janet continues to impress me with her wheelchair driving abilities. I was talking to Cathy from OT as we went down the hall and by the time we were at the first corner (about seventy five feet) I realized I hadn’t coached Janet once to “push”. She had done it all on her own without stopping. High five! At the elevators she more than made up for yesterday’s lame attempt at pushing the down button as she executed an unassisted reach and push! All I had to do was tell her higher, higher till she reached the button. Major high five! Down on the main floor we headed for rehab and Janet did really well driving the long hallways. There was no one around to help us with the elevator to get down to rehab and it looked kinda quiet in there so we headed back for dinner.

Janet really wanted to sit up on the edge of the bed again so that’s where dinner was served. She was happy there for the first twenty minutes or so. I read some Anne to her for most of the rest of dinner then she got a little restless so I sat her up again and she gave me some hugs and rather naughtily took my gown off. Luckily Jen and Corrie came in to change her before they went off shift or who knows what would have come off next. A little stretch, a change into a gown, booties on, splint on, teeth brushed and a goodnight prayer and off I went as she sleepily tried some Houdieno moves. I don’t think she lasted long as she had been pretty busy for five hours.

On the C diff. front, I spoke to Dr. Jones today and if Janet stays as good as she is now until Thursday when the course of antibiotics ends, he will declare her C diff. free. Yay! There is a little downside to that though. Monika overheard me talking to Dr. Jones and mentioned she wanted to know when Janet is cleared as she has had her on hold from transferring while she has C diff. I half jokingly said we should keep her C diff. positive then so she can stay here. That only got a slight smile from Monika and a “we’ll do what’s right” from Dr. Jones.

I’m still not totally confident in moving Janet to a long term care facility so today started a feasibility study into bringing her home. I talked to Chantelle from OT and she is supportive of the idea and excited by the challenge of seeing if it’s doable. There are a lot of pieces that all have to come together, most importantly, is it best for Janet. Chantelle talked to Monika and surprisingly she supports the idea too. Cathy from OT was a little hesitant but said people have done it. Chantelle has taken the lead on this from the medical team’s perspective and I will do some research into how usable our house is and I will also discuss the idea when I talk to Cathryn tomorrow. Stay tuned.

Praying for an active day of learning tomorrow.

Janet was dressed and ready to go when I arrived at eight. Music playing, hair brushed and everything. Nice job Jen! Janet was trying real hard to sit up so I got changed and sat her on the side of the bed. We went with facing out to the hallway for something different and she was very alert and happy to be up. She would often look out to see who walked by and reacted to sounds out there as well. She sat very straight all by herself and seemed really content. I tried to get some sound out of her after she hiccuped, which she thinks is pretty funny now, but all I got was a slight opening of the mouth. She stayed up for about forty five minutes and I actually had to make her lay down so I could stretch her out before Tom arrived.

It was tilt table day today and once Janet was up at sixty degrees Leanne did some range of motion with Janet. There was a new lady on orientation today as well and I was impressed with how well Janet participated with the unfamiliar person in the room. She worked well with Leanne again raising and lowering her left arm on command both in front of her and to the side. About a half hour in Tom gave the OK to raise her up to seventy degrees. Janet did not like that at all today, grabbing for me right away and getting quite a worried look on her face. Tom left her with me and I tried to reassure her she was doing well. We checked her vitals and she was good with a Heart Rate of 120+. Five minutes later she wasn’t any calmer and her HR had risen to 140 so I let her down and got back into bed. I really wish she could tell us what was bugging her because she handled that angle really well last week. After she had calmed down the girls came in to weigh Janet. A nice 1.2kg gain over last week! Twenty minutes later she was sound asleep but after I got changed to come home for a break she woke up. I left anyways as it was time for her lunch feed.

Looking forward to an afternoon of learning.