March 9  Saturday  He slept through the night but woke up sad and grumpy.  Sad because of “Shitting myself again and my shitty friends.” he said crying. He has one friend who comes to see him, the rest have either stopped any contact or have made verbal commitments to visit that never come to pass. He cries about his lack of friends and his painful bottom. All I can do is wipe both our tears and try not to wipe his ass so much.

We have a tough morning. Both of us crying, difficult to get things done between clean ups. I am frustrated that I cannot keep the diarrhea at bay, hurting him every time I take care of his skin.

I have been having recurring concerns, that are getting more like screaming voices in my head. I worry about something happening to me. We are alone all the time. He would not be able to call for help or help himself. He would be stranded and unable to do anything.  The need for another care taker is becoming a frantic obsession it seems. It keeps me up at night.

All of the frustration and stress takes it toll this morning. Nothing I do makes things improve. Every morning I wake hoping for a better day only to be faced with another challenge. His tears and despair this morning break me. I sob in my husbands arms, break down while I feed Colin his breakfast,  and feel like a weakling for not holding it together.

By noon I have decided he will get in the chair. I will use the last of my night pads, line his chair with extra pads and get him up. I do all his leg ROM, his hands then get him up. I better start menopause soon or buy even more supplies for us both.

I zap his triceps for the afternoon, give him lunch, iced coffee and we have a better afternoon than we did morning.

My husband has pulled the old stove out, waiting for help to put the new one in. There will be a little cutting, but not much. Nothing we cannot work around with minor alterations. By evening my husband has made he and I a couple Kamakazees and Colin is feeling better. I know someday he will have more friends and maybe even some old ones will re surface, but right now he gets so lonely and I cannot change how things are. It breaks my heart to see him suffer even more knowing support of his friends is so important to his recovery. Like he said earlier, “Maybe in a year or so it will be better.” Damn I hope it doesn’t take that long.

March 10 Sunday  His morning meds were given late due to DLS.  This was not a good day to lose an hour, but when is? It took almost over 3 hours to get him up. Every time I had him cleaned up, he would have another large BM. This happened 5 times. Each time I had to man handle him, he would cry more. I would cry too.  I didn’t get him up till after 3. By then he just wanted to be left alone. The entire morning through early afternoon was nothing but cleaning and putting fresh bedding down. I managed ROM on his legs, but not much more.  Once he was in the chair he asked for no more moving, touching, talking. I took the time to clean up his area, the kitchen and put laundry away.  By 4:30 he was feeling better and by 5 I started dinner. We ate by 6:30 watched Game of Thrones, prepping for season 3. I didn’t give him meds till 11, which was 10 I guess. DLS is so disruptive is should be considered a health hazard. I was in bed by 11:15 but awake by 2 with my own issues to deal with.

March 11 Monday  My legs began cramping badly, then my stomach, abdomen finally my hips. My stomach was upset, the cramps came is waves, I could not sleep. I had bad diarrhea by early morning when I had to give him his meds. I went back to bed till 10. Still cramping through the morning I had a very large clean up waiting for me. Colin did well all yesterday afternoon, no more diarrhea even at bedtime. It happened this morning. Feeling ill, weak and with my stomach cramping I cleaned him up, got him in the chair. He is crying again, tired of shitting, tired of feeling bad. I am too, being tired of things going poorly even though I try to assure him they will get better.

He has his friend coming to visit this afternoon. I am lazy and get little done. I sit with him while he listens to music, then watches TV. We go out in the sunshine which makes us both feel better. I keep waiting for diapers t be delivered. I actually just tossed the briefs he had on last night so covered they were I did not want to deal. Now I feel bad, but not bad enough to go get them.

I try some food (toast) around 2, then some tea. Still cramping but not as bad. Hopefully this will pass quickly so I can keep up my strength.

He has little appetite, his legs are bothering him. His friend will be visiting tonight so he wants to be up for that. I help him rest, sit with him while he watches a show. As soon as he starts to feel better he gets a couple of texts. The first brings the tears again. An old best friend from HS. They used to play together. He asks Colin to come out to where he is for Easter to jam. He doesn’t know about the accident or Colin’s disability.  Colin remembers how much he loved to play the drums and how he wants to play again so badly. He knows he must text back and tell his friend, but he just can’t find the words. He cries. I cry with him knowing this is one of many many disappointments he must face.

The second one is from another friend who didn’t know. He is able to tell her, sounding hopeful. If nothing else he is hopeful still, despite all the setbacks. We get through the texts then the nurse arrives. She checks him over, his BP is low and she shows some concern over the area of his neck where he had the drain and central line. The puncture from his central line, which was taken out in September, had been seeping. I washed and covered it. It wasn’t bad but the area was close to the drain scar, which means there could be a small abscess growing if it doesn’t close up and heal. Fucking abscess.  Do those things ever just stop?

I have to keep an eye on it, make sure it doesn’t get swollen, pussy or he gets a fever. She takes the stool sample and heads out. I help him relax and rest before his friend arrives.

My husband is bringing a pizza for everyone for dinner, sans me of coarse. I am still not interested in food. Once his friend and the pizza are here, his mood brightens, they visit, listen to music. I have some tea and toast, relax with my husband for a couple of hours.

Colin’s visit is over around 10 and I get him transferred to bed, cleaned up, meds given and lights out by 11:15. It was another difficult day emotionally. We need to get him over this diarrhea so he gets his strength back, so he can work hard again. We have barely maintained his progress but we have to push past this plateau and make more gains.

March 6 Wednesday  One of my co workers was killed yesterday. I am so saddened by this devastating event.  My heart goes out to his family. I see with too much familiarity the ER, the waiting room, the hospital.  That is such a hard way to lose someone. I am so grateful Colin is still with us, despite the changes it brought.

He gets his 7 am meds then sleeps till 9:30. I am trying to get him on a schedule so we have one to give a care giver. I get him up by noon, fed and in the chair. We work on his hands, legs, breathing. He has had minimal suctioning the last few days, clearing most of it himself.

We listen to music, watch some videos, text his friends and do some Facebook stuff, which I hate. It isn’t hard, but that site just gives me the creeps. I used it minimally to communicate with his friends while he was in the hospital, now it’s all him.  He posts a new picture, some song links and comments. We have lunch and hang out. It’s cold and raining so we can’t go outside. We zap his arms, work on his triceps, stretch out his legs.

His legs have been bothering him more. Spasms and nerve pain keep him up at night. He is maxed out on the medications for these issues so there is not much I can do for him. I can get up at night, uncover his legs, rub them gently, but not much else. He takes a little nap in the chair. The hospital calls to schedule his ultra sound and filter removal. The ultrasound will be the 15th at 1:30. She tells me the cath lab, which will do his filter removal, only schedules early mornings. She says we will need to be there by 6 for an 8 am procedure. I let her know that will never happen. She asks if I am refusing the procedure. I tell her no, that there is just no way we can make it to Fresno anywhere any day ever at 6 am. I let her know how long it takes us to get ready and travel. She calls back later with an 11:30 arrival time on the 26th.

We have a nice dinner, my husband is at a DJ show tonight so won’t be home until late. I talk with my sister then he does FaceTime with his dad. I have him in bed by 11 and I am up gain by 1, then 3. He is just not sleeping well at all.

March 7 Thursday  It’s another rainy day, I start a fire. His diarrhea has returned. And the incontinence people have not delivered supplies so he is out of diapers. Fuck us. I do his leg ROM, zap his calves then get him fed and dressed. I put a pair of briefs on him, line it with my most heavy duty overnight menstrual pad, put liner pads on the chair and get him in. We do some exercises, listen to music. I find a free camera mouse software so he can use his head movement to move the mouse.  I order some page turners so he can type on the keyboard. My goal right now is for him to be able to use a pager turner to activate Siri on his phone. So if he is in his chair, he can call his friends, update Facebook or call for help if something happens to me. I need to print the voice activated phone application from the state, get a doctor to sign it then send it in for approval in 5 years.  I make a schedule for him that includes all activities in the twelve hours he is usually up.  I include all PT and OT times as well as exercises for each and goals to work towards. He is not enthusiastic. He is tired all the time, having trouble getting motivated. His legs begin to bother him early afternoon, which makes moving around uncomfortable.  We need to get him back on a PT/OT schedule and he agrees.

“Mom, just make me do it.”  he sighs.

I am pushing for taking all his meds and water by mouth as we expect the PEG tube out by the end of the month. He only has me grind them for the early morning and night doses. It will be a battle getting him up early to eat and take his morning dose. I will have to start soon.

I have to get him back in bed earlier than usual to clean him up. He has a couple more loose BM’s but I have a system for a quick and minimal movement clean up. I will no longer be intimidated by a little bit of shit. I just hope our supplies keep up with the demand.

We have a nice dinner, he eats well. I keep him on his side so his ass gets a break. He wants to sleep that way so I bring out the pillows and make the PillowMan comfortable. He does not sleep well again, his legs and now his right arm keep him up. His right arm keeps bending onto his chest. This is from his bicep being so much stronger than the triceps. Now his arm won;t go straight when it used to. He is bothered by that. I get up several times to straighten his arm, put a weight on it, uncover his legs. Sometimes I just hear him whimpering, refusing to call me so I don’t have to get up. I tell him ever time, I can hear him and I will get up anyway.

March 8 Friday  I clean him up and give him his morning dose. I tell him to try to rest some so he can be ready for whatever we are going to do later. I call the incontinence supply place, have to leave a message. I order back up supplies. I start to search Power of Attorney. People want us to do it but Colin cannot sign the forms. I think I need two other witnesses but I have to call a notary to find out. I do and she confirms I need 2 witnesses and as many originals as we can afford.

He is awake by 9:30 so I get him comfortable, start zapping his calves. When we first began the EMS nothing would happen. Now I can get his muscles to contract where I place them. He feels the electrodes sporadically.  I don’t know if it means anything, I just know it’s a change.

We decide against getting him up without a diaper so I spend the day zapping him all over. I get him on his side to zap his ass and give it some relief. He clears his secretions well almost no suctioning. I am able to do laundry and clean the kitchen  make dinner and then relax with Colin and my husband.

Around 10 I get him comfortable, clean, change his trach and PEG tube dressing then get him his meds for the night. I tell him to sleep well, he needs to rest. He is to call me for anything, no matter what. He says he will and I go to bed by 11:30.

He sleeps through the night.