September marks the transition to full time work for me, full time caregivers for Colin. I have no time to work on the blog. No time to relax. It is work, home to care for him, any work I might have a chance to do, sleep sometimes, then start all over again, I am a robot with a predetermined schedule programmed for years in advance.  That is what it feels like. Weekends I do laundry, zap him when he is up for it, help with whatever my husband is doing around the house and any work I have left to do so I am not a complete loser on the job.

Colin has struggled with nerve pain for most of the month. We have modified his pain medications weekly until he has more numbness than pain. For most of September his pain kept waking him up at night and he did not go back to sleep. When he is awake, I am awake. I lie in bed listening to his discomfort, heavy sighs and soft tears. I cry with him from the other room wishing I could do something more than turn on the TV. I am up several times every night, sleeping a few hours then helping him rest how ever I can. We are not sure if the increase in neural pain is good or bad. The balance between pain and numbness worries him. He does not like feeling less but more pain is the alternative.

He can get through the day now and is even doing thera-band therapy at home with A. His therapies are going well. He can now balance without his hands and is getting ready to roll over. He is working on helping with transfers. He is getting stronger. He is gaining weight. A lot of weight. He is on a diet. We have decreased portion sizes and cut out the candy.

He sees the Neurologist once a month to re evaluate his medications, his new and improved Primary Care doctor as needed. We still have not found an orthopedist.

During this month we marked the one year anniversary since his accident. 365 days had passed since I got the call late that night that changed our lives forever. To often I still watch him struggle, remember how he used to be and hurt for what he has lost. He remains optimistic while I worry about his future and how much longer I will be able to physically care for him. I feel my age undermining my efforts every day as I drag my ass up the steps at work. My knees, back, shoulders and hands balking at everyday tasks. The lack of sleep makes each day seem like an eternity. The day that never ends.

The night of September 17, 2013 I made him a dinner of his choice. Grilled Salmon, garlic potatoes and a salad. We ate late since I spend about 45 minutes chopping garlic for the potatoes but we celebrated his advancements, laughed about the hospital bullshit and made fun of nurses we didn’t like. We had shots of whiskey. We made plans to go see the Rehab people so they could see how much progress he has made. We celebrated surviving the last year.

During September we finally got the van fixed. We finally got an appointment with a vascular surgeon to deal with his IVC filter and it’s removal.  The appointment was on the 19th, a day I was scheduled to attend District training. I arrived late, left early. I met D and Colin at the office, we checked in at 1 pm. At 2:45, fucking 2:45, we finally get in to see the little surgeon I will call Dr. F for fucking asshole. I had been trying to get this taken care of since March. He walked into the exam room with no clue who  Colin was, he had not even bothered to read his chart or look at the CT scan done in early April before entering the room. He left to go do his fucking job. When he returned he said it was no big deal if it remained in and if Colin wanted it out they would make another attempt. I started to talk to him, he pulls out his phone to let me know my talking is interfering with his schedule. I don’t give a shit about his fucking life, let alone his schedule. I waited for him to finish checking out his phone then asked why it had taken so long (he had no explanation) and why the trauma Dr. seemed to think it should come out (he was only interested in his opinion) and why we came all the way down and waited for nearly 2 hours to be told nothing new (he didn’t know). He did say that the problem Colin had the last time was common for quadriplegics. That was my red flag that this was a Dr. who did not do his homework. This is a guy who begins assuming he knows everything, then reacts when  something different happens. He was never prepared until AFTER a situation changed. He did not use his education and experience to plan. He had not earned the right to be an arrogant asshole. He was just a fucking asshole, lazy, unprofessional arrogance that came from his ego instead of his skills. Fuck Dr. F.

Colin decided he wanted to try to get it out so we made arrangements for them to contact us with an appointment. We go out to eat and recover from the elitism. I talk to his neurologist to adjust the nerve meds again so he can have some comfort. We are in the dose levels where his heart and liver become a concern. It is always something.

Mid September his friends arranged for a stripper to come to their house and invited Colin down. D met me in town, I took D’s truck home so a cg was with him that was not his mother. I was grateful for that and have not asked any questions. Some things are better left unknown.

We continue the month, the meds are adjusted once more and finally, the last week he begins to feel better. Last week he slept through each night, he woke feeling better, looking forward to the day. He harassed A and started doing more at home that just cringing in pain watching mindless TV. He was doing good for a change.

The last Saturday of September I took him to his friends BD party. He has a good time, a small hangover the next morning. By now I have a massive amount of  school work to do at home, behind in posting grades, getting papers back. A new curriculum means I cannot use the materials I have created and amassed for over a decade at my current location. I may not ever be ahead again, but barely ready at the moment.

Now today, Monday the 30th I have a chance to update as he is in the cath lab at the Fresno Heart Hospital undergoing the final attempt at removing his filter. We arrived on time at 11 am (barely)  At 1:30 they wheeled him away and sent me to the waiting room. We did get his weight today, a whopping 145 pounds. No wonder I am struggling to move his ass. We both need to work out. He has gained almost 30 pounds in the last 9 months. I think that is enough!

Now that he has been in his own room for about 7 weeks, we have made small advancements in getting the rest of the house back to normal. We also have to get the yard done, find some sort of shed to replace the garage, build a fence so the hating neighbors will stop blaming our lazy ass dogs for getting the fat ugly cows all riled up. We need to repair the roof and are looking into solar panels with batteries over the long term instead of relying on a generator for power outages. Still over a year left I think until we feel like we have recovered completely from the chaos of modifying the house.

We still do not know how he will physically recover. He may have as much mobility now as he will ever gain. His sensations may always be painful. It has been just over a year and even though I choke back tears when I get him in bed, massage his legs I am still grateful he lived through his ordeal. He still wants to walk, to use his hands. He tries every day. Maybe we will get lucky but if not, we made it this far, we can do anything.

I sit here waiting for his 7th surgery to finish.

It has been 2 weeks. I leave the house at 8, get to school by 9. Class begins at 9:30. I have a lunch break then, after school, I either plan lessons or head home. I alternate late days with early days. Early I am out of class by 2, the other 4. Early days I try to run errands, late days I try to make it home in time to get dinner cooked before either A or D leave at 6.

Colin is doing well with both of them. He has learned to tell A when to stop cleaning. He and D are best buds and make all kinds of plans for excursions, meeting friends and having fun. In addition they do his therapies as well as take him to the doctor. So long as nobody gets ill, we are ok.

Ian came to visit the first week. He arrived about 10 am on Thursday the 23rd. I was at work. They hung out until I got home with some food. It was my late day so I didn’t want to be cooking while Ian was home. We all hung out until I had to get ready for bed. I got Colin into his bed but left Ian to give him his meds and turn everything off. I even turned off the monitor.

Friday Colin was up when I was making coffee, Ian not long after. D arrived at 6 then I left for work. They had plans to see a movie then we were meeting for dinner at 5. This gave me until 4:30 to get school work done, pick up Sam and get to Pismo’s. Sam and I arrived first, got a table, ordered drinks and appetizers. Ian, Colin, Brandon and D all arrived by 5:15. After more drinks, great meals and a $200 tab, we left for home. I let D keep the Subaru so he did not have to drive up then back down, I took the van home. He was back on duty tomorrow so it worked out for all of us.

It seems lately,  when someone visits, we have a major job going on. Today, Saturday,  we are replacing the kitchen floor with the remaining tile from Colin’s room. We empty the kitchen. The refrigerator is in the family room, the cart in the dining room, everything else any place we can find. We still have had no opportunity to clean the room Colin was in nor even begin to tackle the mile of cardboard and clean up outside. D was there so Ian and I went down to the grocery store, picked up Sam and headed home. I would be cooking on the grill for the next few days. My husband was dealing with materials and the tile guy.

For the rest of Saturday we hung out, ate, started drinking too early, ate late, stayed up late and enjoyed hanging out. We paid far too much for a movie but still had a good time making fun of it. They all lasted far longer than I. I put Colin to bed around 11:30, left Ian and Sam to take care of the meds and night logistics. Colin did not sleep. He had his brother put on the TV at 3:30 am. He did not go back to sleep. I was up with him then at 7.

Sunday A arrived at 9. Colin had some coffee then finally went to sleep. He slept till 10. Ian and Sam hung out. A got him up then we all hung out in his room where it was cool. I got a bit more school work done, but not enough to make a dent it what I needed to do. My class website is not operational as I allowed the domain to expire. I have registered another one but needed to get it activated on the servers. Then I had to add content. I am so far behind. I worked for a coupe hours, then said enough.

We had to cook outside again, all meals. We managed to eat well regardless of the cooking limitations. The house and yard was looking worse than ever. Further behind again.

The afternoon, evening was spent hanging out after Colin was up. We still has to rein A in from cleaning and I finally just told her it was 7 at 6:30 and time for her to head home. We enjoyed another evening. Ian had at leave by 6 the next morning to return South. Santa Monica is a nice place but it is a nightmare to get to. I had Colin in bed by 10, myself by 11.

Monday morning I got up at 5:30, made sure Ian was up, made coffee. He left at 6, I went back yo bed. He barely woke Colin to say goodbye. I was up for his 7 am meds, D arrived at 8 and I headed to town to begin my second week back on the job. The tile was not quite finished but would be by Tuesday morning.

Monday night was quieter than last week but Tuesday morning I was dead tired. By the afternoon I was dragging myself through. Colin skipped PT last week since the van is still without suspension. No word from the mobility shop as to when the part arrives. Fucking thing cost $400, it should be there!

He did not skip it a second time. In fact, he texted me that he HANDLED therapy, then went to a friend’s house in town until 9 pm He got home just in time for his 10 pm meds. D helped me get him in bed, the  headed home himself. I was in bed by 11:30. His sinuses were completely clogged. He could not breath. I was up every 45 minutes to apply Vick’s, adjust him so he could at least breath a little. His mouth was dry so he had water then also. I tried to sleep on his futon couch but the 8 lb dog took all the space. By 4 am I went back to my room. Was back up at 5, then 6:30 so I stayed up. I barely made it through Wednesday at school. It hurt to climb the stairs, to pass out papers. I stumbled out by 3:30, made it home to make dinner.

By then we were able to move things back into the kitchen. I had my kitchen back to normal. Now the plan is to start working on getting the yard and the rest of the house in order. We only have weekends to do it. Three day weekend is coming.

Thursday all I had to do after work was pick up rats for the snake. I cooked dinner, fed Colin and even managed a little school work too. I would have felt more productive if I wasn’t still far behind. His nerve pain is returning also. The med adjustments seem to work fine for a couple weeks, then taper off. again every morning and evening from his lower back to his feet he has burning sensations that drive him crazy. Regular pain medicine will not help. Only the nerve pain meds they are adjusting. He goes back to the Neurologist on the 11th. Hopefully they can come closer to a long term solution.

By Friday he had had enough of being at home. I got a text inviting me to a Brazilian place for dinner with him, Loni and D. I was off work by 4, leaving campus by 4:15. We met at a bar, had a drink until the place opened at 5. We had a nice dinner, I got a meal for my husband then went to the grocery store. I was the first one home at 8, Colin, D and my husband all arrived together. We sent D home, hung out, streamed a movie and went to bed late. We all slept in Saturday morning. This was my day on duty with Colin so we could take our time. My husband and I decided Saturday was our rest day, Sunday and Monday we would get work done when A and D were here.  By noon we had done nothing but have coffee, toast and  barely finished Colin’s BMP. It was nice to have no people coming, no work being done. Just the pending work that will take so long, it is easy to ignore.

Colin wanted to go outside despite the poor air quality from the fires in Yosemite. While he hung out in the shade of the trees I began to breakdown the cardboard and put it in the truck. By the time we finished with most of it, the truck bed was full. But at least it was’t all over the fucking place anymore. Every tiny bit we get done gets us closer to having the disaster we call our home and yard back to the way we want it.