The doctor comes in around 6 am and says the same as always. He wants a definite time frame to deal with the fistula because they won’t move ahead with red capping his trach, the next step to removing it altogether. Colin mentions how his leg spasms are happening more often. The doctor tells him he will look at his muscle relaxer dosage. It’s always quick and too damn early. I get up to turn him and he complains about his neck hurting. The RT therapist who came in during the night tightened his trach collar too much. The hose was pulling on it and it caused the collar to dig into his neck, right at the surgery site. I loosened it all up.  I made sure he was comfortable then returned to the cot.

I finally rouse myself when ROM begins at 7:30. My head always fells..swollen? after staying the night. A low grade background pressure headache that does not go away, making me feel lethargic and slow. I feel like I stumble down for coffee.

When I return to his room ROM is finishing. Colin said his neck was still throbbing and asked for some IV pain meds. After they began working I started to get him dressed. Wash his feet and legs, lotions, stockings. I take off the oxygen mist to remove his shirt just as RT comes in fro a treatment. She gasps when she sees he is off the oxygen, preparing to replace it. I let her know I am getting him dressed. She does his breathing treatment, which is now just a vaporized medication without the puff machine. After she finishes I get his shirt and shoes on then brush his teeth, wash his face. He is ready for OT with about 5 minutes to spare.

The first OT session is stretching his neck and shoulders. We give a little resistance to build strength. His right side is beginning to catch up in strength and is much more flexible. Once we finish OT, it is PT on the mat. I do my first of three successful transfers, with assistance, to the chair. He works with 15 pounds on his abdomen again and is doing reps of 20. 2 weeks ago he could barely do 10. He has some more ultrasound on his shoulders. The PT therapist says the wheelchair rep will be bringing a new joystick that he will program to do all the functions from. Right now we change the chair modes with a button he cannot reach. He should be in by 9 am so Colin can try it out during PT Friday morning. I do my second and third transfers to the mat and back in the chair.

We go to the room for a break before his second OT. My husband dropped my lunch off in the car so he wouldn’t expose me to his illness. I take the time during the break to get it. Colin get his feeding and some meds during this time. They try to hook up the antibiotic IV but he convinces them to wait till after OT. OT is in the gym. We take his laptop and hook up the arm assistance then have him type some stuff on the keyboard. He does the alphabet, his name, numbers. It is not the perfect set up but it is a step in the right direction to getting him using his muscles the way he needs to instead of just repetitive exercises. He works at it for 45 minutes then begins to tire. He remains in the chair for another hour then asks to get back in bed. He wants me to rest this time but the people who do the transfer have never done him before.  They do everything wrong, despite protests and instructions. His trach is bashed so badly the inner tube is popped off. He is held by his shoulders instead of his underarms. He is in agony once they leave us. I do my best to make him comfortable. He asks for more IV pain meds to ease the pain. He rests for awhile. I give him some water through his feeding tube. I contact the closing company to make arrangements for the refinance final papers.

He watches TV and has his 6 pm feeding. I stretch his hands and he practices moving his wrists then tries to move his fingers. I set him up to watch more episodes of The Tutors. He begins to feel pain in his right forearm. It makes him cry and I am unable to provide anything other than comfort, but no real relief. I assure him I will be as gentle as possible during the evening routine. We both know there is no way to handle him without discomfort and pain. Sometimes everything I do, no matter how slowly or gentle, results in grimaces and grunts of discomfort. We don’t know how long it will be that way. Too often I feel inadequate and clumsy, hurting my child in my effort to take care of him. It is so much more than I have ever had to deal with on every level.

By 8 pm he asks for more IV pain meds. We get through the night routine slowly, with minimal discomfort.  He is clean and as comfortable as possible for the night. He gets his trach care, his 10 pm feeding then his 10:30 sleeping meds. I turn the IV alarm to the lowest level again and set the TV sleep timer. The TV  goes off at 1045 and he is sleeping by then. I don’t usually go to sleep right away, nor do I sleep through the night, not even at home. My head is too full of worry and sorrow. So much to do, so few to help, so many things can go wrong. I hardly think about the normal I used to have, it will never be the same again. I think about everything I still need to learn, things that need to be in place and wonder who is going to be there along the way.