The Doctor comes in at 6 am to talk to Colin. Colin is not awake. I listen while he talks about the new catheter. It will go in Monday and they can get “that darn thing out of your penis.” Colin mumbles “yeah”.

We are awaken at 7:30 by RT who refuse to put his treatment off till later. He then asks the aide who comes in for his ROM at 7:33 to wait. This request is honored. I get up, close up the cot and go to clean up in the RR. There are just too many people in the room now. I gt into the RR not feeling awake, rather groggy and achy. Then I know why. My period, again. I just finished a 10 day extra heavy flow like 6 days ago. How many years I have asked her to go away, I don’t need her anymore. But no, she still shows up at the worst times and now more often, staying longer with a much bigger print. Fucking bitch. I grumble down to get coffee, thankful I have enough emergency supplies to get me through the day.

After ROM the ST comes in and red caps him. This means the inner canula (tube) is removed and a red cap is snapped into place. He is breathing completely on his own, through his proper channels. The OWV he breathes in through the trach tube, out through his nose. There is no nasal moisture in so he needs the mist. With the red cap he does get the moisture from his nasal passages so does not need any oxygen mist.  His stats stay good for the 45 minute trial. He does not drop below 98.  She will do a trial again tomorrow. The next step will be keeping it on through therapies and monitoring his stats through that. He will probably go home with a red cap so if he does get sick during the flu season, we can make sure his airway stays clear. The most important thing is proper hydration so his secretions do not get thick.

PT is mostly fitting him with devices and programs that he can use. There a 2 techs from the wheel chair team who are making adjustments and recommendations. He needs our insurance information so he can order Colin’s chair. The chair order will take months to get finished, with the insurance company putting up blocks along the way. He can change settings with a button he hits, can go forward, turn and back with the joystick. He will need the head array to get him in and out of pressure relief.  He cruises around, gets in and out of the elevator and turns around well. We are walking down the hall, I am next to him watching what he is doing instead of looking ahead. I run right into a wall extending out. Colin laughs hysterically while everyone else is demonstrating a shred of concern through their chuckles. At least I can still entertain him.

PT releases us and we go around the floor for a bit. We have been given a pass to leave and go outside but Colin is due for feeding and meds so we go back to the room.  “I’m baller”  he says when he zips in the room, turns around and parks it. We are watching WWII stuff on History channel since it is Dec 7. I go get some lunch and we head over for OT right after his feeding. He is full so we start to talk about options for the bathroom and getting him into the tub/shower. There are chairs we can use. Of coarse, the insurance will only pay for 1 chair, the power chair. We will need a manual back up and the bathroom buddy as well. We will also need to upgrade the bed but maybe not the mattress since he has already had a pressure ulcer. We will have to see. Once he feels less full, his neck is starting to hurt in the chair, as usual after about 5 hours. He does his OT exercises anyway, even in pain. By 2:45 we head back and he wants out of the chair. He is put back in bed, barley adjusted and his father arrives. The ID enters. They talk about re imaging the area next week sometime, talking about an MRI. I ask why an MRI when the abscess site cannot be seen with that scan. They look at me blankly like I am an idiot. I reiterate exactly what Neurosurgery told me, still blank looks and whispers. Colin and I look at each other, his father looks uncomfortable and disapproving that I even dare open my mouth. Whatever, they are getting a CT scan, a swallow test but no MRI. The “attending” physician goes over their plan and says it will be at least 6 weeks, maybe more on antibiotics. They are talking about a bone infection, unconfirmed, and how they do not want to remove the hardware. More threats, fuckers.  He continues on about how a bacterial colony may still be hanging around, even with the massive amounts of antibiotics he is getting constantly. Super bugs come to my mind first , but I hold my tongue. I am going to have to research this and now I want a definitive answer as to whether there is a connection between the abscess site and the surgery site. Last we were told, there was not. ID is acting s if there is, that there is bone infection and it is moving into the hardware. I don’t like ID. I thought they would disappear when the fever went away. Apparently not.

We endure their banter and they finally leave. His father rushes to his side, showering him with kisses as if he is the saving grace. I just want to get away now and Colin puts up with it well. His father asks about his progress as it has been nearly 3 weeks since he “saw him in action.” I just tell Colin to rest and have OT show him the stretches for his hands.

I say goodbye for the next couple days go get Colin’s contacts transferred to his new phone, go to a doctor appointment, get gas and go home. Since my husband has been sick, well, we have no clean dishes. Or a clean house. But at least the dogs are fed, fat asses that they are. 10 minutes after I get home, the contractor arrives with the plans for approval. It all looks fine, we sign the agreement. I notice the $85, 500 price is in bold type along with my agreement to pay. Eeek.  I let him know I sign the closing documents next week and I will let him know when I have the money so they can purchase materials. I fix some soup and tea, my husband shuffles out weakly to sit having some with me. I change the bed, take a shower then Facetime him in the office that I need him to show me the new set up. My husband, true geek that he is, in his ill state, could not manage to do any chores, BUT he set up an entire new entertainment system in from of the bed. Speakers, raised TV, Roku, blu-ray player. Nobody has ever been so entertained while ill.

He comes in and wants to watch The Exorcist…wtf. I go to sleep.