I have a very hard time getting up. Usually I am up first but not this morning. I drag myself out after my husband has showered. Coffee helps. I am heading to the hospital before 7 and get into the room by 8:10. He has a 9:00 OT, the same time he gets fed. I have to skip ROM on his legs so I can make sure to show his nurse the bed wound. We barely get him dressed in time. OT works on his wrists. He can rotate them in a circle well as long as his hand is perpendicular to the ground. If he works against gravity, it is more difficult. He works hard, gets more motion on his right and can hold hie left longer every time we do it.

For PT we are trying to get him in the chair before the therapist arrives. We are in mid transfer, head of the bed up, air mattress deflated, Colin sitting up, scooted to the edge of the bed. The trauma PA comes in. We have to stop. He pokes at Colin’s neck hurting him. Tells us the scab over his drain hole is a scab. Colin asks what the status is on his eating and can the doctor please come by. The PA says he will try to get the doctor and then leaves. As soon as he leaves, neurosurgery PA comes in. She is new, we have never seen her. She asks about the drain and the surgery site. She has us lie him back down so she can look. She peels off the steri-strips from his neck complaining they are gross and yucky. We tell her everyone was told they would fall off. She said not if someone is not showering. She then complains about the  nurses ans their ability to comprehend basic instructions. She says no matter how many times you tell them you can wash and pat dry a wound, they just “don’t get it.”  She was unprofessional and condescending towards nurses who just follow the orders given by the doctors and PAs. We did not like her. The PT therapist comes in just as we are asking about a bone infection. She says he doesn’t have one. We all look in surprise and his PT therapist says there are numerous references to a T1, T2 bone infection. She says she will have to look at the notes. Shouldn’t she have done that first?  WTF do these people do? Some seem so half assed in their approach. She tells us she will get the answers from the neurosurgeon and get back to us. Once she leaves his therapist says she is glad she was here to witness that. She then starts to talk about the limited range in his left side. She is suspecting extra bone growth in his left hip and wants an x ray. She says if there is then it’s more medications to prevent it from growing further, then surgery later to remove it. Well fuck. I ask if the medication will speed up the bone loss. She says no, that has already happened. He has lost bone and it will continue unless we do something to prevent further mineral loss. Well shit.

We do the transfer to the chair and head down to the car. The car transfer goes rather well this morning. Remove foot rests from wheelchair. Line up the chair so his hips are even with the back if the seat. Remove the chest strap and change the waist strap from around the chair to just around him. Remove the arm support from the left side of the chair. Pull his left hip forward, place the slide board under his thigh. Lean him forward, get low with my shoulder below his chest, my head on his left. My right foot in the car, slide him across a few inches. re position, stay low, keep his hips from hitting the side of the car, slide him straight across, move my leg up on the center console, lift his left leg, push his left hip back. Bring both his feet in, my foot out. Straighten his legs, adjust his hips. Straps across his waist and chest, around the seat for stability, then the seat belt. Ready to roll. Getting out is the opposite, slide board, left hip forward, feet out, bring him forward, stay low, my head on his right side. Slide him out in 3 moves, position him back, lift his knees pull him back, get him lined up. Straps around the chair and him to support his chest and waist, then head inside. She evaluates his hips both lying down and sitting. She is convinced he has extra bone in his hip. She will make sure the rehab doctor orders the x ray.

We finish and have a break before pulleys. he dozes during this time and I start to research bone loss prevention. Besides pills, there is limited research supporting EMS. The other is standing therapy. This means a mechanical stander that has him in a standing position with correct posture. The active pull of gravity stimulates mineral deposit to prevent further bone loss. Muscle movement will encourage bone growth so we would have to simulate movements somehow. Another puzzle to put together later.

Pulleys go well then we are back in the room. We hang out then by 4 he is ready to get out of the chair. Just as we are ready, my husband comes in. He helps us get him into bed, all adjusted an comfortable. His nurse comes in to give the 4 pm pain meds. He starts to doze by 5 so I walk my husband out to his car. We walk around a bit since he isn’t due at his beer gathering till 6:30.  He will be hanging out with several guys, drinking Pliney and watching Batman. He will be staying the night to be safe.I say goodbye and return to the room. Colin is ready for more Boardwalk Empire so I set him up. I continue to research standers and learn I need a doctor to sign a prescription, the PT therapist to do trials and a representative for the manufacturer, all conveniently located here on the 6th floor. I will ask about a stander tomorrow. Even if the insurance declines it, which I am sure they will, maybe having it be officially recommended will encourage his father to help get one. I can only start the process and see where it takes us.

Around 6:30 a transporter comes in to take him for a CT scan. He refuses saying no one told him anything about a CT scan and he wants to know what it is for. The transporter talks  to his nurse saying he is refusing. She laughs and jokes, “Welcome to Colin’s room.” After making some calls she finds out it is neurosurgery that wants the scan. “Fine” he says,” they can come tell me why.” His nurse agrees.

By 9:30 he is fed and I have the cot out, lying down surfing nothing important. By 10:50 he has had is night meds and his episode is over. I put away the computer, turn him, put the TV on sleep mode for 30 minutes, down the IV alarm volume, turn out the lights and get on the cot.It is not comfortable but I am so tired I fall asleep soon. The IV wakes me up around 1:30. The nurse turn it off at 2.  I use the restroom, turn him and go back to sleep till 5. After the 5 am feeding, he is turned and I sleep until 6 when the rehab doctor comes in. I am totally awake at 7:30 when the PCA takes his vitals and get up for the day by 8. Six more days. I have started counting.