I get in during ROM exercises. I start to wash his feet and hands when suddenly transportation is there to take him for his esophagus evaluation. Much to his dismay, we must quickly get him dressed and down to x ray.

Once there, he is moved to a table, we are briefed on the procedure and I am kicked out. I wait outside for about 2 minutes, watching the x -ray caution light go on and off. I really wanted to see what his neck looked like after the neurosurgeon removed some hardware, but it will have to wait. When they let me back in, he is coughing, getting most everything cleared out on his own. We have to wait after the x ray for transportation to take him back, about 20 minutes. Once back in his room I have to suction him a coupe times before he is clear. Then he has OT. The OT therapist is not very good, compared to what we have had. She does not seem to be very experienced, asking us questions and doing things wrong when she ought to have known. I mean, she is the OT after all. The way she transferred him to the chair was difficult.

She is one who does not listen well to her patients. She asked Colin about a glove she had given him to help with the hypersensitivity and he told her he didn’t want to use it right now. She ignored him and sent her aide to go get it, which meant pilfering through his personal belongings. She brought the glove and his second pair of braces. She had to go through everything to get those.  She did some range of motion on his arms but gave no resistance to increase his strength. We were unimpressed and missed his usual OT. He does understand everyone needs time off so he takes the awkwardness.

PT is on a mission to get rid of the muscle knots in his shoulders. Stretches and now ultrasound therapy, then soft tissue massages. He is in agony after. The PT says he tightens his shoulders to help in breathing, but they are so tight now it is a hindrance to advancing his strength and flexibility. He cries and moans during ads well as long after. He is shaking from the pain when we put him back to bed. His is coughing and clearing but still needs to be suctioned after a bout of coughing. He asks for morphine to help ease the pain.

While he is trying to recover, his dad texts that his meeting is going to happen in the area on Monday.and asks of Sunday morning till Monday at 7 pm, with a gap for his meeting, is ok with Colin to visit. I read Colin the text, he does not respond. About an hour later his dad sends an edited version, admitting that it would not be much of a visit, and says he will stay till Tuesday at 7 pm. I read that to Colin once he wakes from a little nap. He rolls his eyes. We discuss that his father is going to stick to Thurs to Sat, regardless of what Colin requested. I also pointed out that if his dad stays till next Tues, he will not return until about 10 days later, Colin says “He is not doing Thurs to Sat or he might as well not come. That is not acceptable!”

“Well, I don’t think he will do anything else”  I remind him.

“I don’t want him here like that but I want you to have a break.”, he is whimpering now, looking helpless, frustrated, exhausted.

“Don’t worry about that. We do not have much longer. If I need to be here the rest of the time, I will. I do have things I must do, but it will only happen after therapy while you are resting. You decide what you want and we will make it work.”

He has an in bed OT session and the OT is impressed with his progress. Now he can raise his left wrist and hold it, his right is trying, but still weak. Strength and range of motion are all increasing. He has some more sensation in his feet. Worst of all, poor guy, he is now aware of the catheter. He winces every time he is moved, no matter how I secure it to prevent pulling. I apologize and assure him “all is well there”. But, a 23 year old man, his penis is of great concern. While most women would be hoping to have sensations there last, I’ll bet men focus on it far more than necessary  resulting in sensation when they least want it. Men… seriously?

He calms down a bit, sleeps some more. I have to wake him to turn him the his meds are due. I tell him to think about his response to his father so we can get back to him and it is entirely up to him what he wants. With a heavy sigh and submissive voice says “Tell him to come.”  Before I do we look at the calendar. If his father shows up Sun to Tues, then the following Thurs night to Sat evening, that could be the last time we have to accommodate his schedule. His brother will be here by the 19th and then we will only have about 21 days remaining in rehab. At that point, if Colin decides, he either meets Colin’s schedule or does not come at all. I remind Colin he is free to change his mind at anytime and we will always make sure him and his therapies are a priority. I do not want him stressing out about giving me a break while enduring his father when he does not want to. Stress and frustration will not serve him well.

I reply to his father, who texts back again, the days he is willing to come down.  He must make sure we know he is changing the schedule again, this time without discussion or regard to anyone else.

Colin now has a nice 90 minute nap until 6:30. When he wakes I turn on the TV and hunt for food. Cheese pizza and a cup of fruit. It looks better than the wilted salad, the veggie burgers made of cardboard or a cheese and lettuce taco salad. Sad the hospital has more gross meat and fried food choices than vegetarian. They could at least make then equal.

After dinner we do some stretches. He wants to bypass the bowel program and I agree. Everyday on a tube fed diet seems excessive. I comb his hair lamenting that we still have not gotten the hair wash basin for the bed. I want to wash his hair. It amazes me how little things bring me contentment, just like when he was a baby. A good BM, clean bottom, soft skin, combed hair, finger and toe movements, strength and health. These things are no less exciting despite him being an adult. I think I still embarrass him too. Not long after his tube feeding the RT arrives to “check” on his oxygen stats, hoses and moisturizing water. The nurse is in the room too so I go out and call my husband. Once I returned Colin tells me the RT flipped out when he found out I did the suctioning. He didn’t seem to hear that I had been trained. He had no faith in the previous RT therapists.  Another noob on the scene causing a ruckus with their OCD.

We watch a movie together and by 10:15 his nurse brings his night meds. The nurse is a nice guy tonight, not as slow, prompt.  By 10:40 Colin has the TV timer on, has been turned, falling asleep as I left. I was home by 11:45, showered and in bed by midnight.

He had had a tough day, a lot of pain in his shoulders after working on the knots. The pain always wears him out. Tomorrow would be better. We are having more good days than bad, a big improvement over the beginning when everyday was horrible.

Sunday morning, a day of little activity. I go down searching for a real breakfast, return disappointed with coffee. He sleeps a bit longer then I wash his feet, do some leg stretches and start doing the EMS on his legs. I have to test the electrodes on myself first to make sure they are still good.

I wash his hands, apply lotion, brush his teeth. I ask several times through the day for bathing supplies but none ever materialize. He watches a couple movies on TV while I  occasionally chat with my husband as he returns home from SF. Since I was not there, they were able to go out for non vegetarian food…German sausages!

I apply more lotion, due range of motion of his legs,his breathing exercises then we work on his arms. Most of the day is relaxing and I eventually go out in search of a good lunch. I manage to return with a nice salad.

Mid afternoon I receive the following text from his father:

“Colin, I am sorry you are in distress.I wish there was an easier way to ensure everybody’s needs were met with the greatest consistency. I think, given the circumstances it would be best to say that for my visits going forward I will leave no later than 7 pm on a going home day  unless you are having medical issues. The coming week I have a significant backlog of work and we are having our office holiday gathering on Saturday. Therefore, I will not be down Thurs -Sat. It would be my intention to come down Sunday morning and stay till Monday evening, but that would depend on work issues Monday. I should know later in the week if I can miss work on Monday and will let you know as soon as I am able. I am proud of your resilient efforts with rehab and strong responses to the setbacks to your rehab. I will do everything I can to see you next weekend. I love you, Dad”

I read it to Colin. “Asshole” is all he said. I wonder why his father includes Thursday in his visiting time when he hasn’t arrived on a Thursday in weeks, nor does he get here before 9:30 pm. But whatever. He has essentially said his work and holiday party are more important than being an active, supportive family member in his son rehabilitation and recovery form a near fatal accident. What the fuck is wrong with someone like that?

No reason to dwell on the inevitable. We are now on on own to deal with the changes ahead and staying with Colin at the hospital. I won’t leave unless I have to go to a Dr. appointment or sign papers, etc. I will make sure these are done after therapy when he is resting. We won’t have any time to get the house ready for the next coupe of weeks and then only Saturdays, as my husband works. I call my husband and we agree we will work something out. It’s only about 5 more weeks. I may not be able to come home for long, but I will come home more often during the week. We can do a cramming “get ready” session when his brother comes to visit. I can get home around 11:30 – midnight most nights and leave by 6:45 the next day. The only thing that prevents me from going everyday, is gas.

I tell Colin how sorry I am about his Dad, that he deserves more from his father. He shrugs. “If it didn’t give you a break, I would tell him not to come at all.” I tell him that is understandable, I had hoped his accident would change how his father felt about self sacrifice, but sadly it did not.

We did some more stretches and breathing exercises. We watched ‘The Walking Dead” and some 30 rock. By 9 I started his nightly routine and by 10:45 he was cleaned, fresh bedding, meds and ready to fall asleep. I was home by 12 am, took a quick shower and crawled in bed next to my snoring, passed out husband. The sausages had gotten to him I bet. It took a awhile to fall asleep. I am so saddened by his father’s actions, even if not surprised. Colin deserves a father who will do anything for him in a time of need. Where nothing is more important than being with him, learning how to care for him and what he needs to do to be healthy and strong. That is not his father though, and why I divorced him when the boys were very small, Colin just 4. I never wanted them to think that behaving in that manner, especially towards a family member in need, was ever ok. It is wrong and selfish. Colin deserves better.