I wake only a couple times through the night. 4 am is my usual time to wake for about an hour. I empty the water trap on his mist line around 6, just after the doctor sees him. At 7:30 ROM begins so I get up, clean up the room, change and get some coffee. He is complaining about his trach collar being in his throat again, which it is, so I loosen it. Overall he does not feel good today. He is having pain in his neck, his arms, warm sensations in his feet and legs. He is irritable. He gets his feeding and some IV pain meds around 9 and I start to get him dressed. We have our final SCI education and my in laws stop by for a quick visit. They bring a nice little live Christmas tree, which livens the room, no pun intended. A general surgeon comes in to tell us the plan is to wait for the fistula to close and they are recommending he go home with the trach for safety reasons. She leaves and he rolls his eyes. “She didn’t say anything new” he sighs.

I transfer him to the chair, still not smoothly, but learning more. The PT therapist demonstrates transfers with a lift, which Colin does not like. He gets some arms exercises in, with weights, and the therapist says she can tell he is getting stronger. The weekly roundup (“re check”) happens and the doctor tells us he is asking for a supra pubic catheter. This discourages Colin. He doesn’t want another tube in his body. They are already talking about the trach being long term, now another tube out of his abdomen plus a stomach tube. He is almost crying. The the doctor continues he has no plans to remove the stomach tube either. He may come home with that as well. The speech therapist will be giving him red cap trials, but for limited times under supervision with no plans to remove the trach anytime soon. We finish PT and I transfer him back to the chair. It is a bit uphill as the mat is lower than the chair. Again, not smooth or discomfort free, but a successful transfer. He is depressed. More every day he must face how much his body cannot function. How much he has to do and keep doing every day. I try to remind him much of this can be temporary, but he is despondent saying he doubts it. He does not have any OT today so we go back to his room. I make him as comfortable as possible, try to encourage him not to give up no matter what, but he is sad and unresponsive. He is tired. He sleeps in the chair for about an hour before returning to bed. The chair is not made for his size so he begins to have shoulder neck and arm pain after about 5-6 hours. Then he has to be able to relax enough to do more work after getting out.  We wait about 30 minutes after a request for him to get back to bed.  After he recovers from the transfer we work on some exercises.

He rests some more then we Facetime with his brother. They laugh and enjoy seeing each other. Ian says he will stay with him at the hospital when he visits over Christmas and learn how to take care of him too. Colin always feels better after interacting with others outside the hospital. I think he feels like he won’t be left alone up at the house, that someone will be willing to learn how to help him so he can go out and be social. I hope that happens.

He is much more responsive after his chat with Ian. I get him to do some neck and breathing exercises then settle him down to watch TV. I read and then Facetime my husband, who is still groggy in bed. I have to go home tomorrow and disinfect the house. That’s after I go to Costco, the doctor appointment for another medical release note, meet with the contractor and go to the grocery store. I hate to leave him with his dad when I know it will be the nurses doing his care instead of a family member, but I have got to get stuff done.

I try to read more but am too tired. I doze until Colin is ready for everything to be shut off. I turn him through the night, turn off lights left on, call the nurse for his IV alarm and generally sleep poorly. I am stressing more everyday about being the only one right now who can take care of him at home. The therapists here are aware I will be alone more often than not, my husband at work, and are trying to provide as many options to assist as possible. It is still incredibly overwhelming. I can’t get hurt or sick or do extra work. That sounds as impossible as it is. I just hope I can stay healthy and uninjured until we have a support team in place.