Mary Lou was quite pleased with Janet’s speech abilities and participation level in their session this morning. I was surprised as Janet seemed to be quiet and talking a lot of Klingon with me. I came back to her room just as they were wrapping up and Mary Lou had Janet sing Row Row Row Your Boat for me and she did so nice and loud and clear.
Lunch was a bowl of vegetable soup and some med laced fruit lax. I was impressed with Janet’s ability to eat after the shape she was in yesterday. We then headed back to her room to wait for a visit from Brian the OT. Garret brought Janet’s laundry in while we were waiting so I had Janet try and put it away. She was definitely more confused than normal but was very willing to try and put things in the right places. Brian arrived in the middle of all this and watched Janet finish the job. We decided it would be good to label the drawers and cupboards to help Janet remember where things are. Brian then spent about twenty minutes with Janet trying to assess what her understanding of her situation is. He found it difficult to comprehend Janet today and I attribute that to still being in recovery mode from yesterday and hoping its not the anti seizure med. One of the side effects is confusion so we’ll have to see how this plays out over the next few weeks. Brian also commented on Janet’s vision challenges. I had planned on meeting with our eye doctor yesterday but that appointment got preempted so as long as Janet remains stable I will try and meet with him next week to discuss a vision test. I actual left to do some work around the house before Brian did his thing with Janet and before I left we agreed that he would put her into nap mode when he was done. We discussed getting rid of the hospital bed and decided that we would start eliminating bed rails to see if Janet can safely be in bed without them. Brian tucked her in and left the two lower rails down. He left the room at 2:10, Garret checked on Janet at 2:45, she was in bed but not asleep. Garret walked past ten minutes later and Janet was on the floor. Houdieno returns! She was fine, just a little scared and we had a good talk about it when I returned and Janet seems to think she can get out of bed whenever she wants to. She later demonstrated a similar feeling towards her wheelchair as she made two good efforts at getting out of it after dinner. Apparently our idea of a regular bed is a little premature. Oops.
Janet was getting up from her nap, she eventually did have one, when I returned at 4:30. She was being helped by Curtis who used a straight on pivot move to get Janet from bed to chair. I didn’t think it would work as it requires Janet to take a lot of the weight, she did it really well! She was also talking much clearer and I was able to get her to agree it was because she had a rest. One day that will really sink in. Dinner was a bowl of Clint’s chili that he made for everyone today. Clint is in his late twenties and has been a resident at Connect for seven months. He is very mobile and loves to cook so he runs the kitchen apparently. The chili was good. Suzanne stopped by for a visit and brought another care package with her. Thanks! Janet and her and a nice chat with Janet talking reasonably well considering the time of day and what she has been through. We said goodnight to Suzanne, made Janet’s bed and did all the other bedtime prep stuff before climbing in to start reading a book the Dr. Miller lent to us. Slow Dance by Bonnie Sher Klein, a stroke survivor who was just named to The Order of Canada. Interesting read so far.
Praying for more good rest and healing tonight and an active day of learning tomorrow.
A quick update to say that Janet had a restful night with some obvious healing. She got up at her regular time and ate a good breakfast of scrambled eggs after setting the table for herself. She was sitting by the fire having her water when I came in and greeted me with a “how’s it going with you?” So nice to hear real words coming out of her mouth.
Janet looks much better today, still feeling the effects a little and is not fully back to where she was prior to the seizures but is rebounding quite nicely. Garret has her in the gym now for some stretching and Mary Lou is coming in for some Speech therapy after that.
Thanking Jesus for the rest and healing and praying for more.
Janet woke up just after six tonight and slowly started to brighten up. I got a few verbal responses from her but her voice was very quiet and the words she was saying were mostly Klingon. I did get a whispered “yes” and some facial expressions to a few questions. After ten minutes of her eyes being open I sat her up on the side of the bed to see if she could tolerate that and she did well considering how groggy she was still. Janet didn’t outright say so but I got a strong indication she wanted to go back to Connect so I asked the nurses to change her and we got her dressed. Janet put up with the tossing and turning required for all that to happen and before you knew it her I V was unhooked and I lifted her into a wheelchair. The nurses kept an eye on her while I retrieved the car then wheeled Janet out to it. She helped me get into and out of the wheelchair by putting her left arm over my shoulder. That’s a good sign to me.
The car ride back to Connect was slow and steady as the roads were a little slippery but not as bad as yesterday. Janet was visibly happy to be back and gave the gang a little smile when we walked in on their poker night. I wheeled her straight to her room and Dani got a tube feed going for her. Hopefully that’s just for tonight. With Janet tucked in, I laid beside her for an hour till she fell asleep and I expect a good nights rest and a strong day of recovery tomorrow.
I’m very appreciative of the staff at KGH and Connect as their response and action today could not have been better. Janet’s nurse most of the day was a young guy named Chris who was working his first day in the hospital. After a bit of a nervous start he did a great job. Thanks again to Kiko! So nice to come home to a fed dog and a shoveled driveway. You are amazing!
Praying for rest and healing tonight and strong recovery tomorrow. Thanking Jesus for continuing to place the right people into our lives at the right time.
As I write this I’m sitting beside a sleeping Janet at KGH ER. She suffered two mild seizures this morning. The first was just after eight at Connect as she was getting dressed. It lasted about three minutes and was described as mild. The second one occurred at KGH an hour and half later and lasted just over a minute and was milder. Dr Eppler was the ER doctor who saw her and he played it all down and was quite positive the whole day. Dr. Adams, the neurologist said the CT scan showed only the old damage from last May and said Janet should bounce back from this quite quickly. He put her on Dilatin and she may be on that for life now. He said there will not be long term complications from this and it is quite common for ABI patients to have seizures.
Garret from Connect followed the ambulance to KGH and stayed with us until Dr. Adams said Janet could leave. The staff at KGH have been good as usual. Thanks Kiko for all your help!
After shoveling my way out of our driveway and avoiding all the stupid people on the highway I arrived at Connect just as Janet was returning from the gym with Marlisa. She complained that her arm hurt and that she cried during their stretching session but she was telling me all this with a smile on her face so I played it down and Marlisa didn’t seem too concerned. I then got Janet ready for the trip to the doctor with plans to go home after that as there was nothing planned for her at Connect and I didn’t want to be on the road if I didn’t have to be.
We made it to the doctor’s office right on time and waited just long enough for the snow to melt off of Janet’s wheelchair onto the office floor. That’s what they get for doing a crappy shoveling job. Our chat with Dr. Wiese was pleasant and she complimented Janet a lot on how good she looks and how well she’s done so far in her recovery. The doctor did seem to be up to speed on Janet’s situation and did not hesitate to order the swallowing X-ray and wants to see Janet once a month now to keep tabs on her. Janet said to me afterwards that she had no idea that was the doctor she just talked to but she was nice. That’s all that matters I guess.
At home it was lunchtime and Janet had a nice big bowl of tomato soup. Seemed to suit the day well. I also let her have some crackers and cheese just to keep the rebelliousness going. I went out and shoveled more snow after lunch and Janet spent that time exploring the house and getting herself stuck in our bedroom doorway. She thought it was pretty funny and couldn’t tell me why she had even gone down there as she said she was cold but it’s way colder in our room than the family room where I left her. She played with Nash for the rest of the time I was shoveling then we played the Sesame Street Memory game. Actually we played our own version of it as there was some setting up to do so I had Janet match all the character cards as we detached them from their holders. She did really well with everything on her left and struggled a lot with anything to the right.
A little later on we played a game of Spelling Bee Bingo and Janet beat me easily even yelling out BINGO when she got her last letter. I cued her but it was still cute. Joel and Kiko stopped by for a visit complete with a very yummy casserole and massive dessert. It was nice to sit and chat with them in our home as opposed to a hospital room. I just wish we could get Janet talking louder and more.
Janet ate another rather huge dinner and I carried her out to the car for the ride back to Connect. Praying for a restful and healing night and an active day of learning tomorrow.
Today started off with the usual recap of the previous day. Janet remembered going to Toys R Us and house hunting but she really could only talk about the pizzas we made last night. She smiled every time she mentioned it. All dressed in blue for Seahawks game day we headed off to church. Janet really enjoyed the music and I let her have the communion bread this time.
Janet played with Nash while I made lunch once we got home then we made a quick Skype call to Heather before donning our Seahawks jerseys and Skypeing almost all the rest of the family who were gathered at Leslie and Gavin’s for Ukrainian Christmas dinner. Nice to see Rick, Mike and Karen, Karleigh and Madeline make their Skype debut.
The rest of the afternoon was pretty quiet for once. We kicked back and watched a really entertaining football game and Janet even closed her eyes for a couple of twenty minute rest sessions. It was nice to have her just chilling so I gave her the day off from stretching and let her relax. Once again that seemed to really spur her appetite as she ate a large bowl of pasta for dinner and two bowls of fresh fruit and a couple of Christmas squares for dessert. Even she knew she was eating a lot as she laughed when she ordered the second bowl of fruit and the second square.
Before getting ready to head back to Connect we looked at the homes that the realtor thought might suit us. None jump out as ones we would buy but I did request a look at one just to set a base line for future reference. Janet seems a little indifferent to the idea of moving and is enjoying looking at the various potential properties. I expected her attachment to this house to be greater than it is but I guess her memory is rather incomplete and she does find it a challenge to move around the place. As long as she is part of the moving process I think she will be happy.
Praying for a restful and healing night and an informative visit to the doctor tomorrow.
A better start to the day for Janet than yesterday. She had two eggs for breakfast and then a nice shower and was all smiles as I met her coming out of the shower.
The gym was busy so we cut our visit there short and headed out for the day. First stop was Toys R Us to see if we could find some board games to play together. Chutes and Ladders was an obvious first choice and the Dora the Explorer version made it even more exciting. We also found a memory card game with a Sesame Street theme and a Spelling Bee Bingo game that looks like fun. All these games in theory will be good brain exercise for Janet and all in different ways. I’m glad we found some to try but was disappointed with Toys R Us. Quite the dump, reminded me of Zellers.
Despite the snow we held to our plan of doing a little house hunting and went downtown to cruise by some of the potential buildings. On the way we noticed there was a realtor in at the Remax Kelowna office so we stopped in. That franchise is owned by Cliff and Barb from KGH Rehab so I felt OK going in there knowing we are just kicking tires right now. The agent on duty was very nice and has already emailed me a list of potential properties for us so I guess the game is on.
At home it was time for lunch and Janet was all excited to try her first grilled cheese sandwich. I made sure it was toasted really well as Connie has mentioned bread is a big no no. Janet really enjoyed the sandwich and accompanying dill pickle and surprisingly added some potato chips to her plate. Never would have done that before. We watched a little football before Skypeing Leslie. Janet wasn’t too loud but did OK considering it had already been a busy day and she had not had a quiet time. She did have a bit of a rest after the chat with Leslie as I gave her a little stretch.
Since we are breaking all the food rules I decided to go for broke and have Janet and I make our own pizzas tonight. It was really fun helping her build hers and she devoured it faster than she would have before. I even let her have a glass of Pepsi with the pizza but she actually did not like it and was adamant there was “booze” in it. The little of it that she did drink she handled just fine as she did all the other food she ate today. My confidence is high for her swallowing X-ray.
Janet faded pretty rapidly after dinner so I quickly shoveled a path to the car and we went back to Connect and got her into bed. Another solid day filled with firsts. Praying for a restful and healing night and a productive day tomorrow.
Today was a bit of a test for me and Janet. I elected to stay home this morning and get some domestic stuff done and also to see how Janet and the Connect staff would handle things. Both Mary Lou and Tez have provided the staff with instructions as to what they need to have Janet do so I was curious to see how that all would go down. I told Janet last night that I would see her after lunch and she said she thought she could handle that. I had lots to do at home so despite my constant wonder of how Janet was doing I was not tempted to go in earlier than planned.
I arrived just after 1:30 and Janet was in her room listening to music, “waiting for you”. She was in a really positive and chatty mood and I saw no signs of her being too stressed or bored. She gave me a run down of her day which she thought was “terrible” but clearly by what she told me it was not. I went to get Lorne’s take on the day so far and he agreed with Janet on the getting up and refusing to eat breakfast part and the going to the gym then having lunch. Janet could not remember Christi’s name as the one who spent some time in her room writing and reading with her but she did remember someone had come in to do that. Lorne told me he toileted Janet after she asked to go. He left her in the bathroom with instructions to push the button on the call pendant if she needed help and walked down the hall about fifteen meters. His phone rang and it was Janet already. She had peed and was ready to get out of the bathroom. A first time successful call for help!
When I got back to Janet’s room after talking to Lorne, Janet was smiling at me kind of mischievously. I looked closer and could see she had something in her mouth. Turned out to be a candy from the bowl I left on her dresser. We used them as nurse bait at KGH but I haven’t told the staff at Connect about them yet. Janet was able to reach the bowl and help herself. I told her Connie would consider that a big no no and her smile got even bigger. As we talked Janet’s words got more and more scrambled and then she said “if I don’t rest it’s harder for me to talk and think”. Finally! She still didn’t want to lay down despite realizing it’s good for her but I offered to join her so she agreed. This time I think she actually slept for fifteen or twenty minutes and after an hour and a bit of quiet time she was noticeably brighter and we went to the gym for a pre-dinner stretch.
Dinner was a challenge as the staff won’t and can’t allow anything other than pureed. I offered Janet a choice of a few things and she chose the left over pasta I brought in despite my warning it would be mushed up. She ate maybe half of it as it’s no where near as good pureed. I plan on having her home for lunch and dinner tomorrow and Sunday so will feed her well then. The staff are aware of the challenge and everyone is hoping Connie will up the diet after the swallow X-ray. While I was watering her after dinner I remembered the Tootsie Rolls in her room. I offered her one and she was all over that idea. That was the first one she was “allowed” to eat without the chewing cloth. She really enjoyed it.
I encouraged Janet to stay out in the living area after dinner and we played a game of Monopoly Deal. First time for both of us and she beat me. We then watched America’s Funniest Videos and Janet actually laughed at some of them. We agreed that most videos were just of really stupid people. That took us to bedtime and the promise of a busy day tomorrow. Praying for a restful and healing night and thanking Jesus for the progress made so far.
Janet surprised me this morning by greeting me with a huge smile as she sat in the living room at Connect watching CNN. She said she had a good breakfast and was having a good morning so far. In anticipation of the appearance of Tez the Physio Therapist, we headed down to her room and had a little chat and played a math game on the iPad. Janet impressed me with her recognition of patterns and grouping from smallest to largest. I realized we forgot to weigh Janet yesterday so I asked Garrett if we could do that. Janet has gained again so I think it’s safe to say we are done with tube feeds. Next step is to get her drinking water well enough to get rid of the peg tube altogether.
Mary Lou dropped by to see if Janet had any time for a little Speech session. I left them at Janet’s newly installed desk and chair and when I returned a half hour later they both had big smiles on their faces and gave an encore performance of a vocal exercise they had just done. Janet was nice and loud and clear and was very much enjoying the singing aspect of this session. I will try and get music therapy man in soon as Mary Lou thinks that would be really good for Janet.
It was clear by this time that Tez was not going to appear before lunch so we headed to the kitchen and I blended and heated some vegetable soup for Janet. It was actually pretty good and she ate all but a few spoons full. We got word that Tez would appear between 1:30 and 2:00 so we hung out in Janet’s room for a while reading and talking. To speed the arrival of Tez I put Janet on the toilet and like magic he appeared. All I had heard about Tez before was he was an Aussie. Usually I know what that means and I was looking forward to ribbing him about being the last therapist to see Janet and being late today etc. He’s not your stereotypical Aussie and although I think I will eventually be able to give him the gears today was not the day as he was all business.
As the lone PT at Connect it is Tez’s job to create programs for all the residents there. This afternoon was his chance to see what Janet can do and can’t do and figure out what to work on to help her recover the most physically. He came in with pretty much a blank slate, not relying on Janet’s chart and only using a few key things that Moira had passed on to him. Since Janet had just gotten out of the bathroom and was sitting on the edge of the bed it was the perfect opportunity to watch her transfer using the sliding board. We then went down to the gym with Garret and Lorne in tow and Janet transferred onto the table mat. Tez talked to her for quite awhile about what she felt she could do, what she liked to do prior, what she wanted to be able to do and about a wide range of other things. I was very impressed with Janet’s responses to his questions and her engagement in the conversation. I only had to correct her a couple times and elaborate on a few things otherwise she handled it all remarkable well. It was then time for the let’s see what you can do test and after a thorough workout, sometimes painful, Tez said “your going to be fun to work with” and “I usually put together a program pretty quick for people but I’m going to give yours some long thought”. He seems truly intrigued by Janet’s case and I think sees quite a bit of potential for her. His short term goals are to protect the functionality she has now and start building strength in her legs and arms. Long term will be discussed at the coaches meeting next Thursday but likely will be similar to Brian’s. Independent transfers and walking short distances, maybe some use of that right arm. It was a very interesting session and a tough workout for Janet at times but she realizes the importance of it and I think will respond well to whatever program Tez comes up with.
We finished in the gym just after three and I decided to bring Janet home for the rest of the day. She enjoyed playing with Nash again and is getting really good at telling him what she wants him to do. He is learning to put the ball on the floor where she can reach it so they actually can have some decent play time. We sat by the fire and watch the start of the Fiesta Bowl and Janet remembered she was cheering for the Oregon Ducks as soon as I reminded her of their nickname. Dinner was a bowl of pasta and meat sauce which Janet ate with gusto. Ice cream followed and then after helping me fold laundry she had another dessert, one of Laurel’s Turtle Squares.
Bob and Chris were watching the game in the living room when we got back to Connect and Janet wanted to stay and watch with them for a bit. We stayed until the end of the third quarter then got ready for bed. Another busy day for Janet and I asked her to recap it for me before I said goodnight. She was able to tell me most of what she did in chronological order with a few names different than reality. Breakfast was lunch, our home was Ontario and her room was Bolivia. That’s still the best recap I’ve had from her and she is no longer giving the automatic “terrible”, or “nothing” answer to my questions. Nice.
Praying for a restful night and a productive day tomorrow.
These once a day blog updates are shaping up to be the norm as it appears the majority of my time with Janet will be mid afternoon through to bedtime. From what I can tell so far most of her heavy duty activities will be in the morning and early afternoon with things getting quieter by three o’clock. It’ll be a few weeks yet before the true pattern emerges but that’s what it looks like now.
Today started off busy as Sara had Janet in the shower when I arrived and it was after 9:30 by the time she was sitting at the breakfast table. Janet was offered two scrambled eggs for breakfast but chose to have only one. She gobbled it up and I know would have eaten more and I wish she would have as that’s one breakfast she enjoys. It was her call though.
Back in her room I was about to have her put away her laundry when Mary Lou hauled her away for a half hour Speech session. I declined attending as I want Janet to build a relationship with Mary Lou. Janet reported the session was boring but Mary Lou said it went well. She tried an app on her iPad that pops balloons every time you talk loud enough. She thinks this will be a good tool to get Janet’s volume raised and Janet was successful a few times. Mary Lou is concerned about the excessive saliva Janet has and I know Connie is too. We will be helping Janet become more aware of it. Not only did Janet put away her laundry, she also helped rearrange her clothes so it is easier for her to find them. That was a really good exercise to go through and she seemed to enjoy the challenge of remembering where things were and thinking about how to group them in a way that makes sense.
By the time we finished rearranging her stuff it was lunchtime. Garrett was all excited about his beef barley soup but it was a complete fail. I tried saving it by adding some carrot and broccoli and Janet ate a little of it then but I think I’ve spoiled her eating at home so much.
We made our way down to the gym after lunch with Brian and Rebecca promising to meet with Janet there a little later. I had time to give Janet a good stretch on the table mat and was finishing off a stretch of her hand when Brian and Rebecca came in. They spent over an hour with us talking wheelchair, accessible homes, Janet’s vision, the various equipment Janet can use in the gym and how daily activities will be incorporated into Janet’s workout plan. All this will come into better focus over the next couple of weeks. When asked about goals, Brian is confident Janet will become independent transferring from wheelchair to bed etc. and is hopeful she will be able to walk short distances, i.e. around the house. To gauge that possibility he had Janet sit on the edge of the table mat and hold onto a stripper’s (or fireman’s, depending on your gender) pole in front of her. On command Janet attempted to stand up and Brian acted as the muscle for her right leg. She managed to get up a fair ways both times she tried and was clearly frustrated each time that she couldn’t get all the way up. We all praised her effort and Brian was truly happy with her first attempt at that and hopeful he can get her standing relatively soon.
That was a busy day so far and being unsure of dinner I decided to take Janet home for a few hours for a change of pace and some food I knew she would eat. She played with Nash a lot, ate a good dinner followed by a bowl of fresh fruit and a relaxing conversation time. We headed back to Connect for bedtime in anticipation of a busy morning as Tez the PT has promised an early session with Janet.
Thankful for the productive day and praying for restoration of Janet’s ability to walk, use her right arm and hand, total restoration of her vision and the ability to talk loud all the time.