Dilantin

A Moving Monday. Janet rebounds a little. #TSJ

Hoping to get answers to Janet’s lethargy and pain I called her doctor’s office first thing this morning and got the impression I wasn’t going to be able to speak to her as she was booked solid. The lab results had arrived and were just faxed to Connect before I called so that was my next call. Jess reported Janet was OK, oddly complaining about sitting up whereas yesterday the complaints came about laying down. She was slowly drinking a smoothy and seemed relatively fine but Jess had no intention of taking her to the gym or anything like that. Nurse Jen and I talked about the lab results which indicate that Janet’s Dilantin levels are within the therapeutic range but at the low end of it. I’m surprised by that and even more concerned now about Janet’s tolerance for that drug. There are a number of things that could be affecting her though, bladder infection and dehydration primarily. Jess just missed a chance at a urine sample before I got in this afternoon and will try again in the morning and as far as the dehydration goes I don’t think Janet is but she can certainly drink more and maybe needs to do so to overcome the effects of the Dilantin.

Jess had just put Janet to bed when I arrived about 1:30 this afternoon saying the first part of the day had gone fairly well and Janet ate a decent lunch before nap time. She was awake when I went into her room and we had a brief chat before nurse Jen came in to examine her a little. Janet’s vitals are normal and there is no evidence of anything wrong other than she’s a little pale and complains of pain from time to time. The problem is she indicates the pain is in a different part of her body every time you ask her. One area that does get mentioned a little more than others is her left butt cheek. I can’t trigger a pain response there but she does touch it sometimes when asked to show where the pain is.

Jen left just after two and Janet was snoring minutes later and continued till 3:30 when Bob stuck his head in the door on his start of shift rounds. Janet fell back to sleep quickly and save for one more brief eye opening slept loudly till 4:50. It took a little while for her to get her speech going but once up in a sitting position started to come around a little quicker. By the time we were in the kitchen for dinner she was pretty bright and happily started drinking her water then ate a large dinner complete with one of Sandrine’s macaron for dessert. Thanks Kiko and Brenda!

I tried getting Janet to make her March Madness picks the way she used to, by choosing the team with the nicest uniforms, but I couldn’t find a website that made it easy to do that so I just had her pick the name of the team she liked best for each match up and she ended up picking Indiana as her winner. A pretty good choice I think. It was movie night in the neighboring house and Janet agreed to go over there with me to watch for a while. Unfortunately the movie was one of the Pirates of the Caribbean sequels which Janet found to be very uninteresting but she enjoyed being there with the other residents and hung in for about an hour. I gave her a bio break once we got to her room and she thankfully and surprisingly had a bowel movement. I was way more happy about it than she was and she says she wasn’t feeling any better because of it. Still a really good sign and hopefully Janet will realize some benefit by the morning. We read some news articles on the iPad for a while after that. I asked her to read and she would get two or three words at a time but no more and was starting to lose her speech and agreed to go to bed at 8:45. I was pleasantly surprised at how long she lasted tonight and by her increased brightness and I must credit the long nap for that. To me Janet is still showing signs of an intolerance to Dilantin and there probably is something else going on but today was much better than yesterday.

Janet’s doctor never returned my call but I’m confident she will tomorrow and I plan on taking Janet in to see her Thursday after swimming as long as she doesn’t get any worse. It certainly appears she’s getting better but we still don’t know the cause of all this. Praying for another restful night and an even brighter day tomorrow.

I 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.

Energizer Janet. Party all night long? # TSJ

When I arrived at Connect early this afternoon Janet was working on a bowl of chili for lunch. I had to help her speed up the process a little as we had an appointment downtown and I wanted to stop at the lab first for her Dilantin test. While she was slurping away, Karl’s puppy, Charlie, came to the table for a visit. I picked him up so Janet could pet him and I’ve not seen such a happy face on her for a while. She had a huge smile while Charlie kissed her and ate the bits of spilled chili off of her shirt saver. Apparently they have developed quite a relationship as a couple days ago Janet was sleeping in her comfy living room chair and Charlie was sleeping on her lap. Karl says he’s pretty hyper with everyone but Janet, he loves snuggling with her.

Our afternoon appointments went well and we even had time for a nice walk through City Park before going home. Janet didn’t remember being there before until we got right out to the lake where you can see the bridge. That was familiar to her. It was a beautiful day here and I’m glad we got out to enjoy some of it because when we got home it was nap time.

Janet didn’t resist the nap at all today and would have had a great one if she wasn’t woken up twice by Nash barking stupidly. I wasn’t sure how long she’d last tonight based on the sporadic sleep but it didn’t seem to phase her at all. In fact she set a record for staying up tonight and was very much engaged the whole evening.

Wayne and Brenda had invited us for dinner with Joel and Kiko and Ramona and Felis. I was confident Janet would enjoy the company but had no idea she would do as well as she did. She was smiling pretty much the whole time we were there and laughed loudly a few times and engaged in conversation a couple times too. She ate well and hardly spilled anything, she drank water, wine and coffee and gobbled up a delicious dessert. Brenda had kindly agreed to start the evening early for Janet’s benefit so we were all there by 6:30. I thought Janet would be good till maybe nine or so, it was 10:35 when we got in the car and we’d only done that because I didn’t bring her Dilantin thinking we wouldn’t be out that late. Janet was very chatty during the drive home, was in no hurry to go to sleep once we got there and in fact didn’t start snoring until about 12:30 which is why this post is so late. It was a really fun night with everyone and especially fun watching Janet enjoy herself so much.

Praying for a restful night of healing and a fun day tomorrow.

Green Lights. Janet moving forward. #TSJ

According to Janet I “got here just in time” today. She said it with such a big smile on her face I thought I was in for some big news but it was just her way of saying she was glad I was there. Jess said they’d had a busy day so far. Shower, breakfast, gym, clean room, laundry, label drawers and cupboards, lunch. I know that pace is good for Janet and she was happy to hear all those things listed off and recanted her comment that she was having “a weird day”.

Brian met us in her room and we had Janet transferring from wheelchair to bed and back a number of different ways as well as laying down then getting back up again. Tez even dropped by and offered a few pointers. Janet worked really hard and did a great job with everything. We even tried a transfer disc that she stands on then you spin her to line up with wherever she’s going and plunk her down. She’s not ready to do that routinely but Brian will procure some better discs then have that incorporated into Janet’s gym workouts. The standing transfer I’ve been using is not very good for my back and has no therapeutic value for Janet so I will use it only for toileting. Janet does really well with the sliding board and the focus is on that now as its something she’s close to doing completely on her own.

Nurse Jen stopped by as we finished with the transfers to have a look at Janet’s former peg site and without hesitation gave Janet the green light to go “swimming”! I think I’m more excited about this than Janet is but am confident she’ll enjoy it and it also means she can have a bath instead of the showers she’s complained about.

After a lot of ups and downs and rolling around it was time for a nap. Janet welcomed that opportunity and was snoring within minutes. I used that time to call Jim the KGH pool guy. He was very open to times that Janet could go there and suggested Thursdays at noon as that is a fairly quiet session which is probably good for Janet to start with. He mentioned a routine that made it clear to me he didn’t know any details about Janet’s condition so I filled him in and we agreed that the first session would be just floating and familiarizing with future sessions leading towards leg and arm exercises. Tez agreed and suggested trying to get Janet to float on her back and kick her legs. We’ll see how it goes next Thursday and Tez will try and drop by.

In a further conversation with nurse Jen I told her Janet’s Dilantin levels still seem high and her next blood test isn’t until Wednesday. She looked at the requisition for that test and noted there is no date on it so I’m taking Janet tomorrow. Hopefully her doctor will have the results Monday and we can chat about the situation. I will also ask for a referral to the neurologist as there are too many unknowns out there for me to keep going like this. Janet has lost learning opportunities because of the overdose and its time to get this straight.

Janet’s across the hall neighbor, Clint, is moving out tomorrow so I had Janet present him with a happy face lollipop. She started giving it to Karl first then clued in and said some nice words to Clint. Good to see her talking to others. Curtis took a brave Janet to the gym after dinner and had a good workout with her after I assured her it would not be a big one as she’d already worked hard today. She came back pleased with herself and seemingly realizing some benefits to all this. We sat on the couch in the living room watching TV while she munched on an apple before bed.

The afternoon nap was Janet’s last sleep in a hospital bed, he writes with confidence. Brian found a regular bed and frame for Janet and with some modifications from Ray she is sleeping tonight in a real bed which she says is very comfy. It is also the perfect height for transferring her to and from her wheelchair. Another step forward.

Today was a good one and I think Janet gained some confidence through all the activity. Praying for a good rest in her new bed and a fun day tomorrow.

Permission to Sleep Through a Meeting. Janet does what most of us want to. # TSJ

Janet is really catching onto this napping idea. I encouraged her and the staff yesterday to have her nap right after lunch today so she would be awake for the two o’clock team meeting. I arrived at 1:30, Janet was sleeping after Jess put her down a little before one. I quietly went into her room at 1:55 and she was very deeply asleep. So much so that she didn’t wake up until I came back in after the meeting at 3:20. I can remember many meetings in the past I would have loved to sleep through, not this one though but I’m glad she did. With over two hours of nap time I was expecting a very bright Janet. That’s not exactly what I got but there were some bright moments.

Heather requested a Skype chat and I thought Janet would be raring to go like she said she was. We connected with Heather about twenty minutes after Janet woke up and I think she could’ve used another twenty as she was very quiet and not focused in the conversation at all. She kept playing with the game boxes and other things on her desk and just wasn’t participating so we ended the call sooner than anticipated.

We made our way down to the kitchen to see if Janet could help with dinner. Her laundry was there for some reason so we took that back to her room and she very diligently put it all away. Strange how she enjoys that task so much.

Chris made a nice BBQ chicken dinner for everyone and we had an enjoyable time at the table. Janet wasn’t talkative at all but I could sense she was enjoying the chatter and she certainly ate well including ice cream for dessert.

Janet accepted Garrett’ s offer to go to the gym tonight and I made sure to praise her for that decision. She came back with a little more energy than when she left and Garrett was pleased with how things went, more so than Janet was. She chose to use her energy to watch some YouTube before bed and really enjoyed that and had some good comments about what we watched.

The team meeting today was a good sharing of information and planning for the next couple of months. Overall the team feels Janet is progressing as expected, slowly but surely. We talked in depth about the Dilantin overdose and all agreed they saw signs of its affect on Janet. I still think her levels are high but we won’t know until her next blood test which is next week. There is still concern about the spasticity in her legs and Tez is motivated to throw every available treatment at her to try and gain some improvement. I expect Janet to be cleared for the pool tomorrow and hopefully start some hydrotherapy next week. There may be a way to bump up her Botox appointment but I need some cooperation from CPP and the good folks at Pharmacare first. It was mentioned that Janet is transferring using the sliding board quite well and Garrett reiterated that tonight saying she did her best one from wheelchair to table mat yet. Jess agreed that Janet loves to be involved in household activities and will try and get her doing more. The other big issue of course is the afternoon nap and all agree that Janet needs one and I think finally Janet is acknowledging that as well. Brian will start to transition Janet out of the hospital bed and that might help Janet feel better about napping if its in a real bed. I’m very pleased with the people that are caring for Janet and I think she is too. Yes, she’s progressing slowly but she’s come a long way her three months at Connect.

Praying for a restful night that provides healing and lots of energy for an active day tomorrow.

New Janet? Big change from yesterday. #TSJ

Apparently all the sleep Janet has been getting lately is paying off. Hopefully the reduction in Dilantin is helping too. I say this because the Janet I hung out with this afternoon is much improved from the one I saw over the last week or so. Jess told me Janet was laying down when I got to Connect and she had chosen to nap before I came to visit as she wanted to hang out with me. She had been down for an hour so I left her for another hour then went in to wake her so we could Skype Cam. Janet immediately started laughing about how she wasn’t sleeping and was expecting me. I could tell right away that she was way brighter than yesterday. Her voice was loud and the words she was using were real words that I could understand. It sometimes took her a few tries to get the right words but there was no Klingon present.

Our Skype conversation with Cam went really well as he was able to tell Janet about his sports successes and discuss his school plans for the next few months. Janet was tuned in and engaged the whole time needing very little help from me. It was very nice to witness.

Keeping the momentum going I asked Janet if she wanted to go to the gym before dinner or after. She of course said neither but with only a little reasoning she agreed to go before. Rikki took her and Janet returned smiling and saying she had a good workout. Rikki hadn’t worked with Janet for a while and was excited about the improvement she sees. She gave a glowing report which was really encouraging for me to hear and I’m sure Janet benefited from hearing the positive news as well.

Dinner was ready, so down to the kitchen we went and Janet obediently drank her cup of water before eating. Who is this person? With a little prompting she even talked to Fred, especially after he guessed I was fifty and Janet was forty. New best friend.

Our evening Skype call to Andrew was not quite to level of the one with Cam but still pretty good. I can tell Janet is processing information better now, maybe not retaining it any more but in the moment she seems to understand things better. She was wearing out after talking with Andrew and wanted to watch a little TV before bed. She actually told me at eight o’clock that she wanted to stop the TV and go to bed. Very responsible.

Today’s Janet really brightened my day and restored my hope that she can deal with this Dilantin crap. This Janet is the one that can work hard at getting better and make progress and I pray she is here to stay. Praying also for a restful and healing night with lots of energy for tomorrow’s tasks and learning opportunities.

Memory Lane. Janet visits the old job site. #TSJ

Today was a more typical Janet day than the last few. I mean that in mostly a good way. She was waiting for me in the living room at Connect with a big smile and a laugh. Her first words through all that were “I haven’t really done much today”. I wonder if she was rehearsing that knowing I always ask her what she’s been doing. Hope so.

Wanting her awake for later in the day I decided it was nap time before we did anything else. Janet didn’t argue about it but didn’t really sleep much either. Lorne got her meds ready for me and we were off for the weekend. First stop was Sandrine’s. It had been too long since the two of them had seen each other and Janet felt good in the store saying she remembered some things about it. Sandrine let us try her new vanilla macaron and it is incredible.

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Seeing the smile on Janet’s face and the obvious familiarity of the place I will make a point of stopping by more often for her.

At home Janet had a long play time with Nash while I got most of dinner ready. She then helped make the salad and set the table. Well done considering the lack of a nap and the fact she is still coming down from the Dilantin OD. After dinner it was time to change finger nail color to St. Patrick’s Day green. That color was not cooperating with me tonight and the process took way longer than it should have, right past bedtime. Janet fell asleep in a hurry even while I was packing for our road trip to the coast tomorrow. We are really hoping we reach our destination this time and are looking forward to a good sushi dinner with Jim and Nancy tomorrow and a yummy birthday lunch with my mom Sunday. All in North Vancouver so it will be interesting to see if any memories are triggered there.

Praying that the peaceful sleep Janet is in now continues all night and we have a safe and enjoyable trip to North Van. tomorrow.

Suspicions Confirmed. A path to improvement. #TSJ

Janet was waiting in the Connect living room for me with a smile on her face. She knew we were going somewhere but wasn’t sure where. Jess told me they let Janet sleep in until after nine as the night staff reported Janet was awake at 2:30 and again just after five. Janet told me she ate a good breakfast and was ready to go.

Her doctor and I were both shocked at the high level of Dilantin in her system and the doctor is very confident that all the symptoms I brought to her attention are from the excess of Dilantin. Good news I guess. My suspicion is that there was a mix up in the conversion from liquid to pills and instead of the moderate increase the doctor ordered last time Janet actually got a fifty percent increase. Not sure if the error was with the pharmacy or in the doctor’s orders but something went wrong somewhere. To be safe, I agreed to have Janet go back on the liquid form until we get the right dosage then we can talk carefully about what that looks like in pill form.

Janet was quite drowsy today, even nodding off in the doctor’s office. After that appointment we had a quick lunch next door then met our realtor to look at a couple condos in the same building as the doctor’s office. Neither were to our liking but it was good to have a look.

I offered Janet the choice of a nap at Connect or home, she chose home and went down for a two hour snooze as soon as we got there. All that sleeping meant we only had time for a quick dinner then it was back to Connect for bedtime.

Everyone I’ve spoken to today is confident Janet will snap out of this pretty quick now that we know she was overdosed on the Dilantin. I expect a much improved Janet after a good nights sleep tonight and am praying for such.

OD? Janet does not have a cold. #TSJ

I called Connect fist thing this morning and Janet was in the shower. Good sign. Jess called me after the shower to say Janet was awake when she peeked in her room around eight and agreed to have a shower. Another good sign. While Jess was talking to me Janet was eating a piece of toast. Good sign number three and enough for me to think Janet was certainly no worse than yesterday. Jess said nothing unusual was reported from overnight and Janet seemed fine.

An hour or so later I called nurse Jen for her take and she said she didn’t notice any big change in Janet and acknowledged that I see way more of her so would notice things better. All was well as far as she is concerned. We talked a little about my concern with the Dilantin levels and she suggested I bump up Janet’s doctor appointment to as soon as possible. We agreed to discuss things in more detail when I got in this afternoon.

Janet was in bed when I arrived, having been there for a couple of hours. She was awake and greeted me with a little smile. There was good color to her face and her eyes were nice and sparkly. Her speech was decent and she agreed to get up and have some lunch. Jess told me Janet refused lunch from her and hadn’t felt like doing any of her usual activities. She wheeled down to the kitchen and chose to have some roasted red pepper soup which she ate with only a little help from me at the end. Jen came down to chat just as Janet was finishing and we went back to Janet’s room so we would have a better chance of hearing Janet. Her speech remained decent to my disappointment as I wanted Jen to hear the Klingon. She had done a little research into Dilantin as I had and we agreed there are some signs of Janet’s levels being too high or the presence of some side effects. I will take Janet to the lab tomorrow to test those levels and then discuss them with the GP Wednesday morning. Jen assured me she sees nothing to be overly concerned about and said Janet for sure does not have a cold. She cautioned that sometimes side effects appear at the outset of using a drug and then they diminish as your body adjusts. Solid point. I’ve been there.

Still with some energy Janet wanted to watch some TV. Luckily there was a repeat of a pretty good NCAA basketball game on and we enjoyed watching that with Fred and Karl. We especially enjoyed teasing Clint who would come in and try to diss the game of basketball and promote his favorite game of hockey. He stood no chance. Some of the jabs thrown brought a smile to Janet’s face. Another good sign.

Dinner was chili and Caesar salad and Janet did a great job eating everything dished to her. I was impressed with how long she was staying awake for and never saw any signs of fading until half an hour after dinner. She helped wash some dishes, rejected the offer of a tootsie roll for dessert and started her rapid decent to sleep. After brushing her teeth and getting her PJs on she was asleep before I could cover her up. Seriously. She was so soundly asleep that she never flinched as I got my jacket out of the wardrobe, which is very noisy, said a prayer and kissed her goodnight. Didn’t move a muscle except those needed to breath.

A definite improvement over yesterday but I am ever more convinced that her Dilantin levels are too high or it just isn’t the right drug for her. Praying that the sleep she was in when I left continues through the night and she is ready for a productive day tomorrow. Thanking Jesus for the accomplishments of today and the people that are caring for Janet.