I get up and get coffee. Colin is still sleeping, we agreed to 8:45 ROM. I hear some people coming in and assume it is RT. I look up and it is the neurosurgeon plus 4 members of his team. He tells us his bone infection numbers are coming down, they are pleased with the results. I confirm he has an infection and it is clearing up. He says it is getting better but it takes a while to clear up. Colin will be on antibiotics until the numbers are to the doctor’s satisfaction. His blood will be tested once a week. He says the CT scan will let them know how the bones look as well as how his neck is doing after all the hardware is removed. Colin says ok.

We finish getting him ready for OT. He has more isometric exercises for his hands and wrist. I have him in the chair, ready to go for PT. He is in the manual chair since we have more car transfers today. Two if he is up for it. I ask the therapist about standing therapy and she says that is something we can try.  She knows the insurance will probably not pay for a stander, but we can always start the process and see where it takes us. I also ask about the x ray to check for HO in his hip. She says she will remind the doctor during the round up.

We do the two. Going in is good, but out has problems. There is no place for my feet. Maybe the chair is an inch closer to the door leaving one spot to pull my foot out of the car and place it, without looking, while supporting him as he is halfway into the chair. It was difficult, but not the disaster of the previous attempts. We then go back up for the round up with the doctor. We find out he will not be on blood thinners once he leaves next week. Antibiotics have not been ordered to be extended so a doctor needs to order that. Equipment is being ordered as we speak, medication and supply lists are generated. All will be explained to us before we leave next Tuesday. She reminds him to order the x ray.

He finishes PT with some arm exercises. The afternoon OT we use the Mobile Arm Supports. I ask what alternative exercises or activities we can do since we will not have the MAS at home. The therapist makes some suggestions, all cost money, but not the 2k for a MAS set up. We will have to improvise that also.

We finish with OT then have a 45 minute break before pulleys. We are going to need a set up for pulleys type exercises as well. The list is getting longer.

Once we are back in the room we watch the last of the Boardwalk Empire. By 4 he is ready to get out of the chair. As soon as he is transferred back in bed, transportation shows up for the CT scan ordered by neurosurgery. CT scans are pretty quick so we are out and back in half an hour. We relax while I have dinner, then we do his night routine. He is really tired tonight and asks for his sleeping meds by 10. He is dozing before that. I get him set up, warm up the room against the cold snap outside, set his sleep timer and am out the door by 10:15. I am counting the days. Five. I am looking forward to being out of the hospital, home every day making up a routine that works for Colin I am worried about his health, his bones, his muscles, his eating. I can’t sleep well with so much marching through my head everyday. How to prevent, treat and/or manage the systems of his body so he has minimal future ailments. My broken boy, I cannot fix him completely but I can figure out a way to stop debilitating conditions while stimulating progress. I need more time, more information, more equipment, more insurance, more money, more of everything I am running out of.  I am afraid.