KGH

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.

Just Floating Along. Janet goes “swimming”. #TSJ

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.

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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.

I Hate Dilantin. Rough day for Janet. #TSJ

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.

Swallowing #TSJ

Janet and I are home for the evening and I’m sure a lot of you are interested to hear the results of her swallow X-ray so here is an update on the day so far.

Lorne took Janet to the gym after breakfast and got her on the Shuttle after some stretching. He reports that she did very well, doing thirty reps with one band and sixteen with two. She only had one melt down during the entire session and it was minor. When I arrived at 11:30 Janet was finishing making her bed and “looking for some after school type work to do”. Since we had to go soon I got her what I hoped would be her last mushy meal for lunch and she ate that quickly while we had a brief chat with Tez. I asked him about Janet being home on weekends and missing a day in the gym. He feels the different therapy experienced being away from Connect is just as valuable as being in the gym and having the weekend off would not be detrimental to her treatment. In light of that Janet will be home Friday and Saturday nights from now on. As to my concern about Janet’s leg work being done in the mornings we agreed to leave it up to the staff as to which workout they could do best with the time available. Tez feels there is no measurable difference between working the legs in the morning as opposed to the afternoon.

We raced off to KGH and despite the expected parking challenges arrived on time for Janet’s swallow X-Ray. She was in and out in twenty minutes with the Speech Pathologist (not Connie) seeming to make a real effort at qualifying Janet for as unrestricted a diet as possible. After the test she couldn’t tell me anything specific as she wanted to review the video recording and as it turns out Connie would review it as well. Janet and I visited the old gang at Rehab which brought out lots of big smiles from Janet and everyone who saw her including Moira, Cathryn, Dr. Miller, lots familiar nurses and especially our long time table mate Barb who is now walking with a cane! The visit there was very good therapy for Janet as she was reminded of how many people love and care for her.

As soon as we got home Connie called with her results from the swallow X-ray. Janet’s diet has officially been elevated to “Easy Chew, Thin Liquids”. Translated that means pretty much anything Janet wants to eat with the exception of tough meats or hard vegetables and fruit. Raw carrots was mentioned as a no no but when I told Connie how much Janet loves baby carrots she agreed to allow those and anything similar including sliced apples. The main precaution with Janet’s eating now is to ensure someone is always with her and to monitor the pace with which she eats. There is still a little bit of residue in Janet’s throat when she swallows but it’s not nearly what it was during the last X-ray and clears with a second swallow. One thing she failed at was using a straw but that’s no big deal. Connie will go to Connect tonight and give them the written instructions so that Janet can start eating real food there tomorrow. For her first authorized meal she has chosen steak fajitas which we are going to start making now.

Praising God for all the good people in our life and for the success of today so far.

Gourmet Puréed #TSJ

When I got to Connect this afternoon I asked Janet how her day was so far. She was happy to report that she “got up this morning”, had a smoothy for breakfast and did not go to the gym. I thought that was pretty good reporting on her part. Turns out she did go to the gym but shortly after arriving a new resident with some behavioral issues came in and disrupted things enough that Janet started crying so Garrett took her back to the “house”. She had some Speech therapy before Rikki made her a colorful lunch of green beans, carrots, cottage cheese and pork. I was surprised to hear about the cottage cheese as Janet had thought it pretty disgusting at KGH but apparently lapped it up today.

Our chat took place in the living room while waiting for Brian to come and meet with us. We talked to him in detail about the wheelchair and now have a plan in place to get Janet’s chair set up ideally for her so I can actually buy the darn thing. Brian offered a few accessories intended to make Janet’s day to day routine easier. Most of them I found to be too compensating and Brian agreed that we need to have Janet learning and re-learning to do things rather than having something do it for her. One useful item is a short easel that sits on top of her desk at an adjustable angle and allows a book or the iPad to be positioned in a more useful way for her. Some of the items were food related and we agreed to leave food prep out of Janet’s itinerary until she is cleared to eat real food. That brought up the question of the swallow X-ray. Connie had emailed today saying KGH has yet to receive the doctor’s order. I phoned her the doctor’s office right away and was told she had some things to do to it before sending it off. Translation, she forgot about it. Grrrr. We had a good long talk with Brian and Janet was very patient throughout and near the end she went off to explore the living room a little. She returned with a pillow on her lap so I invited her to a pillow fight. She thought that was great.

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Janet went for a shower before dinner and we hung out in her room for the few minutes we had before heading down to eat. Rikki made another colorful plate for Janet, carrots, mashed potatoes with a little yam in them, cottage cheese and chicken. The best looking meal Janet has had at Connect and apparently a tasty one too.

Since Janet missed out on the gym this morning I took her in for some leg stretching and got her on the Shuttle as well. I wasn’t able to set it up as well as Tez had it but Janet still got a decent go at it. She was reluctant to try standing so I tricked her a little bit into doing a standing pivot off the Shuttle. She did really well once I got her started towards standing.

Bob was leading a bunch of the residents in a poker game tonight and Janet enjoyed watching for a little while. She didn’t understand the game of course but liked the loud action. She also really enjoyed watching some YouTube before bed and after being tucked in agreed that today was a good day.

Praying for rest and healing and a productive day tomorrow with positive news about the swallow X-ray.

Coming Back #TSJ

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.

KGH 3 #TSJ

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!

Praying for rest and healing.