Today got off to a difficult start. Janet was just returning from the toilet as I arrived and we did our usual routine in preparation for breakfast. She was smiley but quiet and seemed fine to start the day. At the breakfast table things were fine at first but deteriorated in a hurry. I quite excitedly offered her a cup of coffee. She smiled and nodded her head but when it arrived she wanted nothing to do with it. I had to convince her to try some which she eventually did but only one sip. Her breakfast tray came and the only thing on it she would eat was yogurt and as she took the first spoonful, the sip of coffee she had a few minutes earlier came streaming out of her mouth. I was not impressed and told her so. She smiled and proceeded to try and “drink” her yogurt from it’s container. She completely ignored my instructions to use her spoon and kept trying to drink it, laughing as she did so. I believe the laugh was not a funny laugh but a I’m confused and don’t know what to do laugh but I was getting mad at her. Breakfast could not have ended soon enough and back to her room we went thinking I would let her drink her water rather than have me inject it. That was a disaster as well as she seemed to have lost her ability to swallow altogether. She started crying and that’s when I figured it was time for a restart. I sat her real close to me and told her we were starting the day over again because I wasn’t happy with the way this one was going so far. We prayed and I read her a bit of the Christmas story and we pretended the day had just begun.
Luckily this all happened on a Tuesday because this is the day Moira is always late getting back from Rounds so we didn’t have to worry about being late for Physio. Janet Bam Bam’d her way to the gym and lifted a few weights then played catch with me while we waited. She seemed a lot more with it after the restart and got a big smile on her face when Rob nearly fell off the mat he was kneeling on onto her lap. Finally a funny reason to laugh.
While Janet was in Physio I got a chance to speak with Dr. McCann. He is confident the timing is right for Janet to go to Connect and understands my concern about Physio. He said Janet has done better than he and other people expected her to do but probably isn’t getting full benefit from an hour long intensive Physio session now. If she shows signs of recovery as in close to walking again then she would be welcomed back to Rehab for a three or four week period. He feels the odds are against her walking again but she has fought her way through a lot already so you never know. He agreed that it is worth another try at Botoxing Janet’s legs and will do so before she moves to Connect. We are to continue with the passive stretching each day in an effort to maintain her range of motion and by the time we hit the one year mark we should have a clear picture of where Janet will end up physically. At Connect Janet will receive less direct physiotherapy but more active therapy from the staff. In other words, her day will be more active all around rather than busy busy for a short period of time. I asked about hydrotherapy and Dr. McCann is totally in favor of Janet coming to Rehab as an outpatient for that as soon as the peg tube is gone and her toileting improves.
Cindy the nutritionist stopped by next and we talked diet. Janet had another nice weight gain and is now in her proper BMI range. I explained that the lunches and dinners are going well but breakfast is a challenge. There are not many choices for breakfast on Janet’s diet so we will attempt the porridge one more time tomorrow and Cindy will try to dream up something else. Based on Janet’s weight and willingness to eat the pureed foods Cindy agreed to stop the late night tube feed for one week and see how Janet does without it. If her weight holds we can start thinking about getting rid of the peg tube provided we can hydrate Janet orally. Good news.
I picked Janet up from OT as she stayed after class to discuss the outfitting of her wheelchair. Another OT was working with Jessica and they came up with a few modifications to help Janet be positioned correctly in the chair. We then went for lunch and sat at our own private little table so Connie could join us and observe Janet’s eating habits. Lunch was a block of pureed beef and mashed potatoes along with a bowl of soup and some fruit, Ensure and pudding. There is no way I would eat all that even if I thought it was good so I’m not sure how they expect a patient to eat it all. The meat looked like dog food and I was really concerned that Janet wouldn’t go for it but thankfully she did. In fact she ate it all along with most of the mashed potatoes, soup and a little fruit. Connie was pleased with how Janet did. There were no swallowing issues other than a couple of delays and Janet did well feeding herself this time too. She kept a nice steady pace. Big steps forward.
Despite saying she didn’t have to go I some help to get Janet on the toilet and she went. I used that opportunity to get her into bed for an afternoon rest and told her I was leaving and Laurel would hang out with her the rest of the day. She didn’t believe me but stayed in bed at least until I was outside and past her window.
Thankful for all the information gathered today and the progress Janet is making.