Fall Back

What is all the talk about the summer solstice being the longest day. Bah!. The longest day was yesterday, the day the clocks go back. And of course that’s the day the nurse cancels. So, we had a long day together. It was fine, there was nothing scheduled. We just had to entertain and care for Maggie.

That should be no big deal. After all the excitement of Halloween, she was wiped out on Saturday. It poured rain here and she just stayed in. After a day in the house there was no way she was going to stand for a lazy day around the house.

We headed to the new Academy of Sciences again. It’s only six or seven blocks from here. The rain was gone yesterday, so we hoofed on over there. Last week was so ridiculously crowded we stayed for only a couple of minutes. This time we took advantage of the first “members only” hour. Or at least 15 minutes of it. (We were a little slow getting going). Once there we ran into Maggie’s speech therapist/augmentative communication specialist and her kids. That was great fun. Maggie always has more fun with other kids around. The tunnel of fish and the Cave of eels were particularly enjoyable. The Cave was just large enough to fit her wheelchair, both height and width. Steve pushed her through on his knees. Once inside, even Steve (6’4”) could stand up to view the eels.

We are on a short leash when we go out because Maggie needs various procedures done every three hours. She also needs tube feeding every two hours. The feedings I will do anywhere, the other stuff, not so much. We have to be home or somewhere private, accessible and convenient to do the required procedures. We came home and took care of all the necessary matters. However, it was still only 1:00PM. There was a lot of day left. If we didn't find somethign else to do Maggie would start her new favorite trick.

Maggie has developed this behavior of pulling out her trach to get attention. It is not good. It is frustrating and exhausting. She does it over and over again. You have either to hold her left hand down, or put on a “glove” that prevents her from getting at it. Of course, she can easily pull off the glove, so it is a never-ending struggle. We have tried getting angry, frustrated, acting disappointed and everything else. What she wants is attention and she gets it no matter what we do. Hence, she is rewarded for this behaior. We cannot ignore it because she will pull it right out. We needed more activity.

Steve needed to get some work done so we headed downtown. He went to his office and Maggie and I shopped in downtown San Francisco. It is a shopping Mecca. I know times are hard, but you sure would not have known from the crush of people downtown. It was invigorating and fun. Maggie kicked off her shoe as I was pushing her across Market Street, but fortunately, I saw it and retrieved it before it was run over by a streetcar.

Back home for the next round of procedures and then Maggie helped me cook dinner. She threw dishtowels and anything she could reach out of the drawers. I was exhausted. She was not. We finally sat down to dinner and she was bored. She succeeded in pulling the damn trach out just as we were finishing dinner. We jumped into action, cut the ties, re-inserted it and re tied it.

This is not my idea of a relaxing day. We definitely had fun, but the pressure to keep Maggie from pulling out her trach took so much energy, and then she did it anyway. Not sure what we are going to do about this going forward. It seems to be something Maggie just does at home, and 75% of the time just when I am home. Isn’t that special? It’s a little something just for me.
I was extremely happy to see the night nurse arrive. Waking up today in the light was so much easier than last week. In addition, it’s Monday. And my sweet daughter goes back to school. Whoo hoo!