Cold morning, 26 degrees. Everything is frozen solid. The air is dry although there is a dusting of snowflakes on the deck. I get to town slow, not rushing hoping he will get a chance to sleep. As soon as I walk in I know I am wrong. He is grumpy. The nurses seem off today. There are two of them and everything took longer. The older of the two always had some comment. It was irritating and Colin had no patience so close to going home. He let them know how he felt about them each time they entered the room.
“I have been awake since 7:30.” I look at the clock, 8:15. The usual crowd I ask. He nods wanting to sleep. He has a feeding at 9 and OT at 9:45. Between the two I get him dressed, teeth brushed. OT we do his neck and shoulder exercises to prep for PT. By 10:30 I have him in his chair, the one his father bought and delivered yesterday. We do one car transfer then back up to the gym. Today he gets on the tilt table. He only stays standing for a few seconds before his blood pressure drops, but he was on his own feet for the first time in 113 days. He had to go back down to horizontal, then got up to 60 degrees without dropping his blood pressure. He said it was weird.
Right after PT we rest for lunch. OT is more isometric exercises and the wraps were taken off his hands. He rotates his wrists, shaky, not perfect, but he gets some rotation done on his own. His hands look like reptile skin. We joke about taking videos and calling it monster reptile hands or something. I tell him I will take care of his hands tomorrow.
We finish OT and get to pulleys. As soon as pulleys are done we have to return to the room and let x ray know he is back. I am still getting him back in bed, transportation shows up. We are rushed to x ray so we can wait in the observation room until the techs are ready. The x ray takes about 8 minutes. Then we go back to wait for our return. My husband shows up during our absence and waits in the room. We get back 2 hours after we left. The waiting just makes him more irritated. Colin talks about the hip x ray and says he really hopes he gets some good news. He doesn’t think he will, but he really wants to. I tell him I hope so too. I don’t remind him the PT therapist seemed pretty certain he has it.
Once he is back in the room I get him comfortable. A group of nurses are in asking questions. Equipment orders are being finished and medication lists rechecked.
I have to go with my husband to Costco to look at generators, mats and humidifiers. I will be gone for a couple hours and make sure he is ok with that. We go brave Costco on a Friday evening. The generator is one that has been recalled, the humidifier has poor customer reviews. We do get some mats for mud and the entryway runners. I will order the generator online from Costco, a different model as well as the humidifier.
My husband drops me off and I am back up in the room by 6:15. Colin is resting, watching a movie on TV. By 8 I start his evening procedure, we are done at 9. He gets his 9 pm feeding at 9:30 and his 10:30 meds at 10:50. I have him ready for sleep, buttons in place, sleep mode on and leaving the hospital at 11:10. Home by 12:15, icy roads. Shower and get in bed. Set the alarm so I can get him ready for therapy Sat. morning. As always I have a difficult time going to sleep. I am so very tired of being tired. I want to have a time to just rest and relax, but it doesn’t happen. Even if I am supposed to be, I don’t seem to be able to. The worries don’t go away, he questions get bigger, the list of things we need gets longer, the problems to solve more complex. I begin to wonder how long before we feel like we have a new “normal” where things are a routine and we can go about our days knowing the days are not going to change much. The doctor appointments over the next few weeks themselves are overwhelming. I am counting about 12 car transfers right there. I can’t deal with it all so late but I stay awake for too long stressing about it anyway.