When I get to the room they are both asleep. Colin has no ROM again and he wants to doze until feeding time at 9. I have 45 minutes to get him dressed. Ian sleeps through it all. We do the morning exercises during OT. She wraps his left hand to try and decrease the swelling. He is doing well with his wrists but the puffiness decreases his mobility.

He still won’t let me transfer him with the drain in his neck. PT therapist does it and we go to the gym. He supports himself for 5 minutes today. His brother missed it.  He did make it for the round up with the doctor. They are starting to order equipment. We were given a month prescription for a suction machine rental. If we don’t use it, we return it. If we do they will refill the order.  The bed and chair are ordered. Supplies are a big issue. There are so many I cannot keep track. Trach care, bed linens, pillows, stockings, DVT cuffs, IV care, catheter care, catheters, wipes, towels, bed pads,  stomach tube care, tube feeding supplies, diapers, dressings, antiseptics, alcohol wipes, and it goes on. I do not know how much is covered, how much we have to cover. I know there will be nursing teams for IV, catheter and tube feeding stoma care. PT will be in town somewhere and OT also, I hope. Doctor appointments, therapy appointments. All require  car transfers, which I have not started yet. The PT therapist talks more about what we need to do with him. I guess a floor transfer is one, where I get him off the floor into the chair. The he needs to start turning himself as well as prop on his stomach. Rather overwhelming again.

The break during lunch I eat then buy Ian some lunch. I tell him I am disappointed he is missing his brother’s treatment but he doesn’t seem to think there is much to do. We head to the gym for OT. Ian stays in the room and plays Garage Band again. Colin works with the mobile arm supports and manages to lift a soft block up by himself. It may not seem like much, but it is another step forward. Ian missed that also.

We get back to the room and Ian takes off to hang out with a friend. Colin and I talk and he complains about Ian not being around. I told him he needs to let his brother know it is important to him, not just tell him “it’s all good.” He agrees.

I do his ROM and we work on his hands. The wrap is making the one unwrapped finger with the oxygen sensor swell badly. We unwrap his hand. We start his night procedure so I can leave before the roads freeze. His nurse tells us there is an esophogram ordered. We all wonder why since the last one didn’t show anything of value. “I bet ID ordered it.” I said. Colin and I discuss it and agree since no doctor has come in to discuss it with us, it is not going to happen. We complain about doctors and other nurses. She feeds him, gives him his evening meds then I finish getting him ready for sleep, all cleaned up with a fresh gown and bed linens.

His brother gets back about 7:10 then his night nurse comes in. She is new but very professional and courteous. She asks some questions and I head home. It is very cold and we already know the pump will be freezing tonight. We get the tea and coffee pots filled, take showers. The older dogs are inside now while the young ones must brave the cold in their doghouse. They have blankets, and would have alot more if they would stop using them as toys.

We all hunker down for a freezing night. I have trouble falling asleep but at least I am warm. Eventually I stop stressing long enough to drift off. Soonwe start day 100. For the few breaks I have gotten, Colin has had none. 100 days he has been there, dependent, helpless in pain and discomfort. I know he is making progress but I still feel his pain.

My husband drops me off at about 7:30. I get into the room, both boys are passed out still. I ask his nurse’s aide for a schedule. He brings it at 8. He has no ROM and OT is scheduled for 8:15. PT at 9 and 945 then OT at 1030. We have no time to get dressed since he still needs a tube feeding and morning meds. I start to get him ready and OT shows up. I let her know we are not ready so she reschedules for later.

After his feeding I finish and we are ready for PT. I don;t do the transfer since he still has a drain in his neck. He gets his stretches, leg ROM and strengthening exercises during PT. He supports himself for nearly 2 minutes even with staples and a drain in his neck. He doesn’t complain once. Ian has gone to Starbucks and is gone for his entire PT session.

We are back in the room for a break before OT. He gets a breathing treatment and Ian shows up with a bagel for me. I ask Ian if he has put any apps on his iphone 4S yet, but he says no. After a few minutes he asks what the ipad is. I tell him his phone but bigger without the phone and Siri functions. He takes a look and spends the next 3 hours on Garage Band.

OT we do arm strengthening. He works as hard as ever with a few grunts. He is good to tell us when he needs more resistance so he gets stronger. The second OT session we go to the gym and get the mobile arm supports on. We try different set ups with the stylus and it is better, but not great. I will need to look for a different stylus or  maybe several different types. During OT a couple of friends drop by and visit. They stay for about 90 minutes. The my husband arrives to get me so Ian and I transfer Colin back to bed. Another disaster, scrunched up at the bottom. The chair was too far forward as we did not have enough room. Trauma over, he had another friend drop by. I made him comfortable and we left the guys to hang for another evening.

My husband took me to a nice dinner, we stopped by the grocery store and headed home. Colin received his Medi-Cal card in the mail along with more bills totaling in the thousands of dollars. I still am trying to figure out how to get us by on $1300 per month less for 3 months. I can’t trim that much out of our budget, so when I see these astronomical medical bills they seem absurd.

It was raining hard while I fed the dogs. Then we had tea and hung out in the office with a heater on.

By 9:30 I was ready for bed. It was cold in our room but after being under the down comforter for a few minutes we are warm and cozy. We talk about stuff and start to drift off. Another day, still doesn’t seem like the holidays. It was my 52nd birthday today and I think I am starting to feel my age.