Chad here. Today was a hectic day for the Wagner family, and a long day for Sue. Kim flew out for a short trip out of town, so I spent as much time as possible with Sue. Unfortunately, that was broken up by work events and a band concert that Samantha tonight.
I arrived before 9am and Sue was up and dressed and seemed to be doing pretty well. She is having trouble communicating with the nurses, and I blame both parties. I think that Sue is not as clear as she thinks that she is, and the nurses are not spending enough time trying to figure out what she is actually saying. For example, when Sue asks for water, what she really wants is a sponge in water, but since she is not allowed to have liquids, the nurses just say no. Sue likes the door half-way closed, but when it is all the way open and she asks them to close it, they close it all the way. Very frustrating for Sue, but not fair to blame that on the nurses either. Just another thing that we need to work through and address.
I spent a couple of hours with her and got to see her through most of PT. She worked on her standing (with assistance), and then did STEM on her left leg. I had to leave, but she worked out on the exercise bike after I left. While I was gone, her friend E came and went (which was apparently a nice visit), and her friend R was there when I came back right after noon. I promised to bring this small exercise ball that I got for her hand, but I forgot it. Sue wasn’t having any of that, and sent me back home to get it, saying that she wanted to talk to R anyway. đŸ™‚
I returned less than an hour later and she was in speech therapy. She was working on swallowing honey-thick liquids and apple sauce. She did okay with both, but not perfect. She still has issues with aspirating (things going down the wrong pipe and ending up in her lungs – coughing and wheezing). I spent a few hours with her and she seemed really tired. She blames the sleeping medicine that they give her at night, but it is the only way that she sleeps all the way through the night. She was tired before because she was up all night. It is a tough situation with no good answer.
I had to leave a little after 4pm for a work function, and then off to take Samantha to her concert. As soon as the *long* concert was over (after 9pm), we headed back to see if we could say goodnight to Sue. Much to our surprise, she was wide awake! She had just been changed for bed and given her meds, so she drifted off over the next half hour, but it was nice to be able to see her (and have her see Samantha all dressed up and looking so pretty). We said our goodnights, and stayed there until she was sleeping, and then raced home for dinner and homework and bed. Hopefully, we will find some of our lost time tomorrow…
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Good afternoon sweet Sue,
I went to the farmer’s market yesterday and bought some nice rhubarb. I made several jars of strawberry rhubarb jam. I will share it with you when you are ready.
Today is rainy but it will clear up. I am going out to do errands as soon as the sun shines. Let Kim know if there is anything I can get to bring to you and I will pick it up for you.
My little grandson is struggling with his cast arm. Poor little fellow gets frustrated when he cannot rip it off. I spend time with him every day to play with his trains and cars. He needs help to move things along the tracks and I do my best to assist him. It is a very long time since I played with trains.
Here comes the sun. I will write again tomorrow. Hugs and kisses, Debbie