I get in at 7 and he is asleep. He wakes up about 7:35 and we wait for ROM exercises. He says the nurse “freaked out” when his temperature spikes to 39 C. He is having a fever again. He tells me they already drew blood and urine. What we thought was ROM was an x ray.  While they did the x ray, his father sends a new text, another visit schedule change. Now, instead of Sunday- Tuesday, he wants Fri-Sun for 2 weeks, beginning the 7th. I suspect his Monday meeting was cancelled and he doesn’t want to come for a single reason, this is just my own speculation though. I leave it  up to Colin. I let him know the only Friday things I have are scheduled after his therapy, when he is resting. This Friday we are going to switch phone carriers and the following I have an appointment to get another doctor note to release me from work till March. He says to let him come. I text my husband and we ponder how long it will be before his father changes it again.

ROM tech had started when RT returns. It is the supervisor, whom Colin does not like as she treats us like we are stupid and refusing treatment to be ignorant and difficult. The only time Colin ever refused, was when he was sleeping and he won’t be bullied into being suctioned if he doesn’t think he needs it. Some of the RT people have some serious control issues and suctioning fetishes, imo.

She is as abrasive and condescending as ever. She expects me to intervene and convince Colin to get it but I remain quiet and let her deal with him. He makes it as difficult as possible. The supervisor seems rather unorganized. She forgets pieces of the equipment, fiddles with the machine during the treatment and repeats herself unnecessarily  What should have been 10 minutes turned into 40, interfering with ROM and lasting until OT. She kept telling Colin they will start him off slow and increase the duration. He told her he was only going to do 10 minutes. I heard her tell her trainee it would be 20. She seems to think she is in control. I guarantee, it will be 10 minutes and will NOT interfere with any therapies.

I understand preventative care. I understand emergencies and when to act quickly. It seems that 1 day of a fever and the medical staff goes into panic. No one is dying. Why can’t they just step back, take a breath and see what his body can take care of. He isn’t in ICU, or having respiratory distress. He has no rashes, unusual smells, oozing, swelling,etc.  We are right back where we were a month ago. I expect ID to show up again. The most frustrating this about western medicine is the treatment. Not only are patients an infinite commodity, their bodies are too weak and need medical intervention for everything, their minds are so underdeveloped they cannot comprehend, (so why bother to be comprehensible in 30 seconds or less) and when the treatment is questioned, it is met with arrogance, defensiveness and confrontation. Then all the documentation, done by them alone, describe a commutative patient as refusing treatment, difficult to communicate with. The doctors and medical staff are not the gods of our bodies. If they are broken, do what they must but for fucking fucks sake, give the body a chance to do some on it’s own. How else does it get stronger?

OT is successful, I get him dressed and he has another good PT session. He is sore and tires but we hang out in the chair waiting for another OT. During this time we find a $20 inflatable hair wash station so I ordered it from Amazon. I also ordered some washable bed liners. I hate disposable stuff. I even used cloth diapers on my boys, I hated the disposable ones. OT is good. More muscle strength and loosening of the tightened joints.  When we get back the hair wash station is on his bed. YAY! I can wash his hair. He stays in the chair for another 45 minutes, then get back in bed to nap.

Not long after, ID arrives.(Our nemesis..amirite??) They look him over, ask a bunch of questions. They are going to look at the x ray, urine and blood cultures. IF there is no additional fever, they will leave it alone. If it continues, and his other results are negative, they are going to suspect the abscess site and will have to make sure it was properly drained. That means another CT scan. That isn’t so bad. No more MRI though, since the site cannot be seen on an MRI.

Speech comes in after that saying she will try to get the Rehab doctor to write the order for his swallow eval, schedule it asap and get him some solid food soon. “I want to eat so bad” he tells her. She assures him she will do her best to make it happen as soon as she can.

The RT arrives for more puff treatment. Again, the therapist does not listen. He tells her how the last treatment, just warm saline, gagged hijm and he almost vomited. “you are not going to vomit” she tells him. She says he has to do it. What a bully. It is not her decision and she thinks it is. He tells her if he feels sick, she has to stop, and he won’t do 20 minutes.  She turns it on. After 10 minutes he tells her it’s been 10 minutes. She asks how he knows.  He looks at the clock in front of him. It had been 10 minutes and the only reason she turned it off was he was coughing. She hovered far too long, getting in the way of our routine, treating us like we are preventing him from doing her job. We tolerate her instructions  hoping she will just go away. She chastises us for turning off the suctioning machine even though it has only ever been turned on for..well…suctioning. (We do use it to brush his teeth so he can spit like at the dentist). Again, we just wait for her to leave. The supervisor was outside the entire time, ready to come in if he gave any trouble. These RT people need some time away from their job!

He coughs for awhile, always clearing on his own. No deep suctioning. RT returns, does trach care, then he gets his next tube feeding. After he digests a bit, we finally get to wash his hair.  It is not the most comfortable nor lacking in complaints but now he has a clean shiny head of hair.

He rests after the trauma,  my husband comes by and we all just hang out for the next several hours. Colin show off his hand movement abilities and asks me to make sure his hands are placed right so they don’t  tighten up. “I want to be able to grab things”. By 10 my husband needs to head to his parents house. His nephew is watching the animals tonight. I come back and the nurse gets blood cultures from the picc line (Colin refuses to be poked again). He gets his night time meds, I turn him, set the TV timer and call button and kiss him goodnight. He made such progress today. He is in constant pain and discomfort but never refuses his therapies, never stops trying. I am so very proud of him.

I get in a bit late due to traffic. He is already having ROM. During this time I wrap his hands and feet in warm washcloths, then wash them and apply lotion. He gets fed with meds at 8:30. I wait till he is done and start to get him dressed. We are supposed to have 45 minutes to get ready, but then OT comes in at 9:15. She tells us the schedule was changed and she is in there for 90 minutes instead of a 45 minute block at 9:45. During the time she works with his arms and hands I am continuing to get him dressed. The OT helps me with his pants and a fresh shirt, we wash his face  then brush his teeth. He then has about 15 minutes before PT.

PT is once again working on balance and the muscle knots in his shoulders. The PT says they are getting softer, but the ultrasound is painful and causes him to moan complaints. We talk about the chest expansion exercises and agree it has been long enough since surgery to restart those.

He is exhausted and stays in the chair for another 45 minutes, then returns to bed to have his feeding and meds. He rests for awhile, I read some but the light is so poor I give up. I order a book light from Amazon. I ask everyone who I run into if they have seen the hair wash station. Everyone is looking now.

By 5:30 he is woken up for more meds and at 6 Loni comes to hang out with her boyfriend Brian. I leave them alone , go out to the waiting room, but it is packed. I wander the hall and call my mom. I talk to my husband then read under the light of the hallway after finding an abandoned office chair in a storage area. They leave after a couple hours as at 8 pm he gets more feeding and we start the evening routine.  He has his vitals checked and he has a slight fever.  Fuck.

By 8:30 we begin to think we he won’t get fed when his nurse pops in apologizing for the delay. He is surprised we have not gotten the suppository and I tell him we usually wait till after feeding. I let him know there is no hurry and it’s ok if we are a bit later tonight.

Colin is fed by 9:15 and I start the BM program at 9:45. I let his nurse know he won’t be ready for his 10 pm meds at 10 and we shoot for 10:30. Colin begins coughing. He asks to be suctioned and I get very little. He coughs more. I suction again, get a little. I leave him flat and he cough for 45 more minutes, exhausting himself but moving stuff out. He also has a 15 lb BM, I swear. If he had been a baby, I would have been afraid for his health. This was just a big BM at the worst time. It meant much more cleaning and moving, which caused more coughing. His arms are starting to feel pain where he hadn’t before. His feet are also hypersensitive and his legs are  in constant spasms. He is more aware of the catheter and when we use the suppository. Poor guy feels like shit all over. He continues to cough and fell crappy, finally asking for morphine along with his other nigh meds at 11:30.  I suction him once more before I leave, getting a fair amount, but nothing thick and/or green. He starts to relax. I set the TV timer, put the nurse call button where he can reach it and kiss him good night. I leave by midnight, too late to drive home, so I stay at my in laws, missing my husband.