October of last year I was a numb zombie dazed each moment. My child was in ICU with a tube in his throat, his chest and titanium in his neck. He could not move. He could not breath on his own.
This year, his surgery was, again, a failure. The filter is coated with immune antibodies and will not budge. Dr F says wait another year. After surgery we had dinner, went home. D helped all day so I gave him my hours from Saturday since he cannot be paid by the state when Colin is in the hospital. We made it through another waiting day.
Tuesday the first was trying. Colin did not sleep, awake at 4 am. I turned on the TV, went back to bed trying not to listen but hearing everything. I just think sleep will be a luxury I will seldom have. That and exercise.. fuck. This is the longest period of my life I have gone without it. I bet my body is disintegrating. Shit.
Also on Tuesday A quit. We have had issues with her time sheet. The caseworker did not follow through when we sent the registration papers in on the 5th of August. We have been working to resolve it for weeks. The state is very slow. A has not been paid yet. She is now 2 months without pay and getting harassed by her landlords. She does not believe me when I tell her they cannot evict her in 3 days. I send her links to help her understand it is a legal process, not a bullying event. She is still freaking out.
I come home Tuesday, pay bills, finally get my laundry done, call all the numbers I can to find out where A’s time sheets are, offer to call A’s landlord, figure out how to cancel an appointment after hours, make dinner,work out what I am teaching and consume not nearly enough alcohol. I also think I am in menopause. No menstrual cycle for 2 months, hot flashes all day and night. Better than debilitating cramps and massive bleeding, but the flashes are uncomfortable and add to my sleeplessness. October is not starting out well.
By the third we have conformation the A’s time sheets were sent at the end of Sept. She finally checked a PO box and found them. We got them filled out and by the second week she had her pay.
Colin however, was growing more frustrated with her. She did not follow instructions well, had trouble listening. She pushed her own way of doing things which was not always the most comfortable for him. She had stopped using the slide board for transfers, then nearly dropped him. We insisted she use it after that. His BMP was not going well with her. I had to monitor and make adjustments, recommendations when I was home. It took several weeks before we realized it was not going to go well. By then, she had given her official written notice effective the end of December. He only needed to hang in there for a little longer. It time to look for someone else.
The first weekend Colin, D and Brandon went to Santa Barbara. Colin made all the arrangements, paid for the room. They went to see an up and coming musician who was giving some free performances. My husband and I enjoyed the weekend alone but got very little done in the yard.
The yard is our current dilemma. No garage to store everything removed, trees of wood to be split and stacks, a mountain of limbs to be hacked into kindling.Still some junk to be discarded, the old wood stack covered and far too many things exposed to the elements in need of garage protection. We need a storage shed. A garage size one. My husband wants to make some foundation. I tell him to use the piles of railroad ties to secure it to the earth. Nothing gets done and shed prices go up. I guess it is going to be a dozen tarps for the winter.
During October Colin was discharged for outpatient OT. He met all his goals of feeding himself (which he doesn’t do at home without the right set up) and…. we are not sure what else. Regardless, he does not have OT anymore.
His PT is going very well. He is able to balance with his hand in his lap, then bring his arms back and balance on them. Once we get his triceps stronger (still need to get the rick-shaw made) we will put him in the manual chair to practice moving himself. His weight is under control after eliminating all the burgers, soda and candy he binged on after being able to eat again. He uses his weights to work out and we are teaching D to use the electrodes. When he is relaxed and warm (usually in the shower) he can voluntarily move his pinky, thumb and index fingers.
We finally got his medication worked out. By mid month he was able to get through the day without excruciating nerve pain episodes. Now he deals with mild AD from the bladder stones. He has been able to sleep through the night with a slight increased in sleeping meds. He had a small amount of Valium added a couple times a day to help with muscle spasms. He still has days and times when he feels bad, but it isn’t all the time like it had been.
He saw his Urologist who confirmed his bladder stones were still there. His Neurologist wanted an MRI but the private imaging center was not equipped to sedate him. Now she is deciding if he needs to go to the hospital for it. We still have no orthopedist.
During October he also got a visit from his father. It did not go well. His father does not understand what life is like for us now. Literally no clue. He was outside with Colin insisting we make phone calls to get him information about the van. Colin was not having any of it. He could have let his dad know we are overwhelmed with phone calls to make ( I currently have an entire day backlog on pending calls..FML). Instead he told his father to make them himself, to find the numbers himself. His father took it as disrespect and defiance. By the time they had gone to dinner and returned, his father was calling him “vile” as he packed to drive home at 9 pm. Colin got him to stay but he was up and gone as soon as Colin had his 7 am meds. Oh well.
After over 2 months being back at work I can honestly say it is no easier. The new norm is exhausting. Even with 2 full time care givers I have no time to take care of my house, myself or see my husband much more than an hour each day. I made the choice to decrease my alcohol intake and am considering an exercise machine. I cannot run like I used to so I need to do something. I get up, go to work, bring work home, relieve the caregiver, make dinner, do work, get Colin in bed, go to bed myself. The routine of my 18 hour weekdays. Weekends are saved for doing more work, cleaning a bit, helping the caregiver and trying to keep on top of supplies, schedules, appointments. There is little to look forward to. I did, however, battle my first cold since his injury without getting him sick.
We have friends who have family in Greece. They asked if we would like to attend their daughter’s baptism in early July, in Greece. We would only have to pay for travel expenses. My husband wants to go, as do I, but the reality is it would be hard. Colin and D have said to go, D will stay with him. I know they are sincere. I know we can pay for the travel with credit over about 9 months. I know we would have a great time and Colin would be ok, as long as everything went well. And there is the problem. What do I do if something happens? How does one travel across the globe in an emergency?
The highlight for Colin during October was reconnecting with a friend from High School who graduated from USC with a degree in film making. She wants to make a documentary about him. He is excited. I have not met her, they have had a couple planning meetings. From what Colin tells me, she is professional and well educated in her field. I think this is a great project for a new film maker and therapeutic for Colin. Something to help him look beyond the discomfort and adjustments we face everyday.