Rainy morning. We got up late but didn’t really care. I make Cream of Wheat for breakfast, use the dryer (a taboo usually) have breakfast with my husband. He wasn’t feeling good. I got him off to work, rearranged the tarps that had blown off the Jeep and “give away” stuff.
Drove to town in the rain, taking my time. I get to the hospital about 8:15. He is already red capped. He is getting his ROM on his legs. I ask how is night went, he grunts. I remind him I want to wash his hair tonight, he grunts louder.
About 9:40, after feeding and meds, I get him dressed. His hands are so hypersensitive I cannot even get a sheet near them. He is in constant discomfort and his spasms are worse in his legs due to the catheter surgery. I finally have him dressed, washed and ready just in time for PT. I do the chair transfer but they are still assisting me. The PT therapist wants to start having me do it all unassisted to have enough practice before we go home. She does a transfer by herself and then has me do the rest. We still have some kinks to work out but we are making progress. He does some very good PT with his arms and shoulders. He now has 22 pounds on his belly for breathing exercise. His inhale is up to 1500 cc now, with the red cap, 700 cc with the OWV. He works on balance without putting his hands on the mat table. He has discovered it is his hands that give him all the trouble while balancing, not his shoulders. If we can get the hypersensitivity under control, he will be able to practice more.
After his workout we rest in the room. He dozes a bit and I eat my lunch. I finish then go out to the nurse’s station looking for some room supplies. One of the nurses who has had him helps out and tells me “I see you have a discharge date.” My jaw drops, I feel numb. “What?! We do?” She puts her finger to her mouth and takes me to a large calendar on the wall. A discharge calendar. It has Morrill on the 21st. That is a week from Friday. I am not prepared. There is so much left to be done at home I start to write a list in my head. I am overwhelmed. I go into his room and OT is there. I tell him his name is on the board for the 21st. The OT therapist says “What?! I didn’t hear anything about that.” She starts to run through stuff we are going to need to start thinking about. My head is on the verge of exploding. I start to write a list. After talking about things she will order as the OT therapist, she works on his hands. He cringes and nearly cries with each stretch. Once OT is over I continue to stretch his hands. They are getting stiff since he won’t let us touch them.
His next round of PT is met with the same shock. “What?!” She says she will get to the bottom of it. She disappears for a moment then returns. “No way he should be going yet. He is making such good progress there is no need for him to leave so soon. I will talk to the managers.” His name is taken off the calendar. What no one is saying, but I am stressing about is the insurance. It may e that the insurance will not pay for any more therapy. We will have to wait and see.
After PT he is hurting again. His shoulders, arms and hands. He get his pain meds and rests for awhile. I have to go to an doctor appointment, return a couple of hours later.He is still resting. His father sends a text saying he won;t be arriving Friday till afternoon and will leave Sunday at 3 instead of 7 pm, detailing every inconvenience and hardship he will not have to endure. If I change a schedule he flips out, but he can change it anytime. He complains constantly about what he has to do to be here, never thinking about the major life change we all are dealing with. I look forward to the day he disappears again. I know that sounds harsh, but he causes more grief and stress than he alleviates. In the meantime, Colin needs his financial support. Hopefully he can count on that more than the emotional and physical support. We will have to see about that also.
Speech therapist comes in, starts teaching me how to put on and remove the red cap. It snaps in so that part will take practice. She tells us the swallow test is tomorrow at 2. I am not looking forward to it. Every one he has had gave results that were a setback. I have no hopes for tomorrow beyond that.
I wash his hair, do the night program and get his settled for the night. It was not a smooth process at all with his legs spasms and hypersensitive hands, sore arms and shoulders. But after 2 hours we were finished. At 10 I start The Dark Knight Rises so he can finish the last hour before his night meds.
By 11:15 I have the cot out and am trying to sleep. Sleep does not come. I am stressing more and more about being the only one. My husband is my support at home and he will help. But he is also not well. We cannot over stress him or his diabetes shuts him down. Colin’s brother is far away and frankly, still not fully accepting what has happened. He seems to have an idea his brother is ok now. I think the reality is too much for him yet. He comes home next week and reality will be right in his face. Hopefully he will be up to the task because that is the only time I will have to get the house rearranged, cleaned and ready for Colin’s return home. I worry through the night, sleep poorly, wake early with a headache, give up trying to sleep and get up.