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.
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.
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.