Les Miserables. A night at KGH

I promised to post updates whenever a worthy event occurred but I never said they’d all be positive events.

Last night at around 8:15 after enjoying a nice sushi dinner and half an hour into the movie Les Miserabless, Janet started complaining of pain in her stomach. I immediately thought she had to go to the bathroom as she hadn’t gone since Friday morning. She vehemently refused to go to the bathroom and reluctantly accepted the chance to lay down. With no consistent easing of the pain I decided to take her to KGH in case something serious was going on. We arrived at KGH at 9:45 and began the waiting game.

Janet was called quickly for blood work and an ECG. The ECG surprised me but they wanted to rule out all possibilities and apparently heart pain can be transferred to other parts of the body. Both those tests came back normal and Janet and I waited for the next event, X-rays. After an I V was installed and a pain med given, Toradol, Janet was wheeled to X-ray at 12:20am. As with the last time we went through this I had to help position Janet for two of the pictures to be taken on account of her right arm. One of the techs worked with Janet last time so that made things easier and with me wearing the lead vest we got the shots needed and were out in twenty minutes.

Sleep came easily to Janet after that and she got a good couple hours in before nurse Trevor tried an enema with no results. Janet’s X-rays showed lots of stool build up high in her abdomen again so no surprise the enema didn’t work. Both Trevor and Dr. Paul Cleave were unfamiliar with the Restoran that Janet had been on. He did promise to re order the “urgent” colonoscopy that was ordered May 9th. Hopefully that happens soon. We were offered a bunch of options we’ve already tried without success so we left KGH at 4:15am with a prescription for more Restoran and with Janet rested and reasonably comfortable.

We both got up around 10:30 this morning and Janet has had a good day so far although she’s a little tired. Jen at Connect was able to find a pharmacy that could fill Janet’s prescription today and as soon as we got to Connect Janet had a BM. She reluctantly went for a bike ride and is now in the standing frame before we go home for dinner.

Praying for comfort and resolution to Janet’s toileting challenges.

A Steady Climb. Janet continues to move in the right direction. #TSJ

It feels a little strange to be writing again after almost a week away from blogging. Thanks and welcome to all of you who have joined me on Twitter. That’s where you can now keep up to date with Janet on a daily basis.

This past week has seen Janet steadily moving ahead in a lot of areas, with Friday marking the beginning of the end of her BM challenges I hope. We finally got the medication started that Dr. Agnew said would work, and boy did it! Janet felt relieved afterwards and I still don’t understand how she never felt any pain or discomfort during the long period of time where she wasn’t going. That may be part of why she wasn’t going and hopefully while at her colonoscopy appointment, Dr. Nash will be able to explain what’s happening. As of today all is well in that department.

When I first met Janet she was challenging herself to become more assertive. As the years went by she learned to make sure her voice was heard very well. I’m starting to see a return of that strong personality now as she voices her opinion on things and has taken a few verbal shots at me. The funniest one being last night while watching basketball. I had been nagging Janet all afternoon about drinking water but hadn’t said anything for a while. Since it was nearing bedtime I casually suggested she needed to drink more water. She very quickly and sharply (smiling though) said “why don’t you drink more water”. Bob and I both laughed out loud along with Janet who promptly had a few big sips of water. I like what I’m seeing from her this way and although she still lacks confidence in her physical abilities she is clearly gaining a better understanding of her situation and the moment she is living in.

Speaking of physical abilities, Janet continues to impress not only me but her therapists as well. I’m praying she soon recognizes herself how well she is doing. Friday’s sessions at the KGH pool were strong with Janet doing some good balancing and “walking”. In our pool on Monday Janet “swam” on her back for ten seconds on two separate occasions. I’m calling it swimming because she continued kicking her legs and moving her left arm to keep her face out of the water. There was some propulsion but hard to measure in such a short period of time and I was so excited I kept thinking how I could get video of it all. No luck with that yet. Janet was pleased I was excited but doubtful she had done anything that exciting. The hot tub continues to work its magic on Janet’s stretchability and she looks forward to those relaxing sessions now. If we could get her that interested in the Connect gym we’d be set. Janet is performing well there but still argues against going each time. The staff and I keep emphasizing the benefits she is seeing from all her hard work and I think we’re gaining ground there. Should be easy to do as Janet is getting measurably better on the bike, the standing frame and the parallel bars almost daily. On Monday she set a personal best riding the bike for thirty minutes and traveling .82 miles. Janet is tolerating the standing frame for forty minutes to an hour now and it’s so weird having her standing tall I can’t sit beside her when she’s in the frame as I’m not used to looking up at her.

Meal prep and household type chores are something Janet strangely enjoys. She eagerly puts her laundry away and helps me make her bed. I still have to prompt her to look at the labels on her drawers to see where something goes and she needs a lot of guidance with kitchen duties but her willingness to try is cool and she really does concentrate fully when given a task.

Janet and I went for a nice long walk Monday evening to explore the neighborhood. We saw a nice development with some single level homes for sale but decided we don’t want to live in Lake Country. I tested Janet’s vision while we were out by asking her to read signs and find certain objects. She can see things for sure, her challenge is in sorting out what she’s looking at and zeroing in on the key thing. It was a fun walk and Janet seemed to enjoy the challenge of finding things to look at, kind of like eye spy.

The following is the first in what could be a weekly feature of the blog. This interview was shot this afternoon and its purpose is to allow you all to see and hear Janet for yourselves instead of just reading my words. We hope you enjoy.

Praying for continued improvement and acceptance by Janet in how well she’s doing.

Anniversary. KGH revisited. #TSJ

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

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

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

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

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


No Smiling. Chef Janet helps again. #TSJ

While bathed in the morning sun I woke Janet up around 8:30 this morning so we didn’t have to rush through breakfast before going to church. It has been well over a week since Janet’s last BM and with no action overnight I decided I’d really try and get her more physically active today in hopes that would get her going. With that in mind I had her do as much of her morning routine herself as possible. That included a few standing attempts with her pulling up or pushing down her pants. She excelled at that again today. As Janet finished her breakfast she turned to me and asked, “if it’s OK with you I’d like to go to the bathroom?” How could I say no? That turned into her most successful bathroom trip in over a week and I gave her a standing ovation. Not even sure if I gave my kids one back in the day so Janet’s pretty special.

The morning success paved the way for a positive and enjoyable Sunday. There was singing and laughing at Trinity with Tim’s talk being on sex and Janet thinking that was pretty funny. I finally got her to sign her passport renewal form so after church we went to the dreaded mall to get some pictures taken. It wasn’t that hard for Janet not to smile for the camera but it was super hard for her to control her blinking. Thank goodness for digital cameras. She did a great job and took the best passport picture I’ve ever seen. We stayed there for lunch then went home for a really good stretch and a nap. I got both of Janet’s legs the straightest I can remember after working them for a good twenty minutes. The left leg especially still seems quite tight but once you get it going a bit it loosens right up. Janet didn’t argue about her nap today but did say that she doesn’t sleep during her naps or snore. I told her I would record some video of her sleeping and snoring during this nap if she would believe me then. She agreed, fell asleep for two hours but only snored a couple times so no video. Next time, and it’ll get Keeked.

Janet was such a big help with dinner yesterday I wanted to make something today she could help out with as well. Cinco de Mayo is coming up and we were discussing what to do for it and decided to warm up for it by making enchiladas. Janet chopped an onion, opened cans, poured, stirred and scooped and was very willing to help in anyway she could. Cooking this way is actually becoming fun and I hope we can keep it that way. You can see her scooping with a smile on her face on Keek, @larrylatour.

After dinner we watched a little basketball and halftime came just at the right time for a quick stretch. This one wasn’t as good as Janet was getting tired so I took it easy on her wanting our evening to be fun. She had a little problem with the Dilantin tonight in that I neglected to get her to drink a lot of water after taking the pills. I thought since we were sitting watching TV she’d sip on her Fresca enough to get them all the way down. Wasn’t the case and she started complaining her throat hurt. Turned out to be nothing more Fresca and a little ice cream couldn’t cure then it was a bowl of popcorn and The Voice before bed. Janet actually called her own bedtime tonight. The Voice ended about 9:40 and she started wheeling away mumbling something that turned out to mean she was ready for sleep.

Praying that Janet has a restful night that brings lots more healing to her legs and right arm and provides her with energy and strength for tomorrow.