May 18 Saturday He was up several times during the night. At 3 am his catheter had leaked. I changed the linens and had him clean, dry then going back to sleep by 3:30. He woke again at 6 needing another blanket. I started his BMP by 8:30 but he had some congestion I had to stop and help him remove. His allergies caused extra secretions. They tended to accumulate in the bottom of his lungs, where he has trouble inflating them. They get tick and it takes awhile for him to get them out. Today he had to struggle. We are not suctioning him anymore. The option will be gone as of Monday.
We finish clearing his lungs, complete the BMP just as his father arrives. We do his ROM, get him dressed, in the chair. They are going to go out for lunch, then maybe up to the mountains for a drive. I make sure they have meds then help them get all his stuff ready. They leave about 1pm.
My husband and I have not had the house to ourselves since last December. We take full advantage. By 4:30 they are back. My husband and I had a late lunch so make dinner early. Then we relax while Colin and his dad visit. I get him in bed by 10, leave the meds out for his dad to administer, get in bed. I still keep the monitor with me in case they need something but otherwise I don’t need to get up at all.
May 19 Sunday His father leaves before Colin is up. I let him rest after the late night. I have him exercised, washed, dressed and in the chair by 2. We go outside for some sun. His friend comes by to hang out for a little bit and my husband and I enjoy some time outside. It’s a nice Sunday with no unexpected complications.
May 20 Monday. I have him awake by 7:30 for his BMP. we need to be leaving the house by 9. After a quick ROM I have him in the chair and we are driving out by 9. The first time we have made an early time schedule.
His trach is to be removed today. Since we must go to the Pulmonary Clinic we expect about a 3 hour wait. We are prepared. After checking in we must wait in the hall, there is not enough room for a wheel chair, let alone a power chair. I get a call from his primary care doctor’s office. She was on vacation so is returning calls. I let her know we still need follow up in the IVC filter removal as well as the Urologist. She says she will get on it and get back to me. Cool! At 10:30, a nurse comes out and calls us in. we are stunned. It’s only been 30 minutes. An intern is in the room within 5 minutes. Something is up. He asks some questions then steps outside to discuss the removal with the Pulmonary doctor. He asks a couple more questions, pulls out the trach and they look for a gauge pad to put over it. All the cabinets and drawers are locked. The docs do not have a key. Fortunately for them, I have spare and hand them over. And finally we find out why things are going so well. Apparently the Pulmonary doc ran into his rehab doc who chastised him about not removing the trach sooner. Pulmonary doc asked why we did not tell his rehab doc we had an appointment. I told him we didn’t know until Thursday, after seeing his rehab doc on Tuesday. Regardless he said we only had to return if there was a problem then we were heading out the door by 11. And we had a ton of time to kill before his 3 pm Neurology appointment. Figures things go well and quickly when we least need them to.
We go have a long lunch, walk around, go get ice cream then make our way to the Neurologist. She began his neural mapping (she checks the electrical conduction through the nerves. It is “sporadic” due to his injury. We knew that already.) Colin was feeling poorly and was not up for the muscle stimulation part of it. The needles in his muscles was the ultimate deterrent. He promised he would be more prepared next time. She gives him a prescription for nerve pain medication and we make an appointment mid June.
We get home, He relaxes while streaming a show. I make dinner. After dinner he wants me to vibrate his feet on the massager. He is tired and is in bed by 9, lights out by 10.
May 21 Tuesday I let him rest since we have no appointments. I give him a bath, change all the dressings do his exercises. He is in the chair on the computer while I make lunch. We go outside for awhile. I went in to get some water, noticed we had a message. It was his primary care doctor’s office. The prescription nurse left a message saying the doc had no idea who prescribed his sleeping medication, and Colin had to make an appointment to come discuss it with him before they would refill it. I was dumbstruck. The doctor is the one who wrote it, after we went in to see him about a change. What the fuck was going on? This doctor’s office had 3 of 12 prescriptions to keep track of (and he wasn’t using the other 2). I returned the call, told her that the office wrote it and they better fill it. I went back outside to vent in the sun. After I settled down we went back in to get in the stander. He was up for an hour, then I zapped his arms and vibrated his feet. We went back outside for awhile in the early evening. We came back in he did Facetime with a friend for about an hour. I made dinner. We ate, he streamed a show while I did some laundry. He was in bed by 9:30, ready to sleep by 10:30. We have had a nice routine now with no illnesses or distress. It is nice to take our time with his exercises, getting some time in for sunshine. He is using his adapters well for his phone and computer so I don;t need to be there to help. I actually have a clean kitchen every day. Sadly, it is the only daily chore I manage outside of his care. Now the old dailies have become when ever I get a chance.
May 22 Wednesday We were able to take our time again today. He is waking around 8:30 so I have little time between when my husband leaves and his care begins. I used to be able to update the blog, now I am lucky if I can get a shower in. This morning he wanted to check out his trach wound in a mirror. I spent quite awhile holding the mirror so he could look at every angle in all light profiles possible.
We get through his ROM, his BMP, wash his hair then get him up. While he is on the computer I leave another message for his doctor regarding the sleeping medication. I also mentioned I wanted an explanation regarding why they can’t keep track of what they do. We go outside, it is rather chilly today, get some sun. Back inside and he is in the stander for the hour he has set for himself. I vibrate his feet, zap his arms and we talk about items for his room. By now it is 4:30 so there is no way the doctor’s office will call me back. Fuckers.
I make dinner. Colin is relaxing so my husband and I go for a quick walk. When we get back he is almost ready for bed. I use the tuning fork on his feet then he is ready for me to stop poking at him. I get him ready for bed, lights out by 10:30. It has been good for us staying at home. The pressure to meet appointment schedules is stressful. No matter how hard I plan, we are always barely making it. I like not rushing around.