April 21  Sunday  Colin is soaked again, a few more stones but not as many as before. We have a BMP so we make it through that with a few interruptions. I text my sister to find out how our mother is, she says the same. Hospitals and weekends means no information available until Monday.

We get up after exercises and several brief changes. We have pizza. We go outside and look at the concrete area, plan some more placement. We enjoy the sunshine as much as we can.

His friend comes by to hang out so I get a chance to go research more on alternative catheters, how to tell difference between kidney stones and bladder blah, blah.  I start dinner about 5, open some wine. We eat at 6:30, his friend leaves at 8:30 then we watch the next GoT. S3;E4. Not bad. I am not as disappointed as I was before.

I get him in bed, he has more chills and headache. He has little urine output when he is in the chair, but lots when lying down. What can that mean? I make sure he is dry, can remain so under the highest output and get into bed by 11. He gets me up at 3:30, still dry, but so is his catheter bag. The flood is coming.

April 22 Monday  Earth Day. My sister calls after I have cleaned him a couple of times, called the nurse. Our mom has an aggressive lymphoma. Under most circumstances it is treatable. She is too weak for the treatment (chemo). She is not eating, extremely weak, in a great deal of pain. She is a 12 hour drive away. It might as well be across the Pacific.

We get through his exercises, have more pizza then go outside. We get some sun, go in the shade, back and forth. After about an hour we head in, he gets on the computer for about an hour and a half. I clean the kitchen, empty recycling, clean up his area, wash his mattress, put clean linens and the liquid barrier I devised with multiple chux pads.

I get Colin in the stander. He is up for 45 minutes. My husband gets home but isn’t feeling well. I have him go relax and rest, make dinner. Once dinner is done, we clean the kitchen. Colin is streaming a show so my husband and I get trash ready to take up the driveway.

My sister calls. They are transferring her to Medford after all and will start some kind of therapy. Still not much definite information. I will call the hospital in the morning.

The frame has been started on Colin’s gym. Progress is being made. We relax for awhile. I am looking for larger dressers and room dividers. I try to print some form out and the printer dies. The back up we got from a friend is DOA. We have no printer now. Something else to add to the list.

He complains about a headache and chills before I get him back in bed. He is wet when I do transfer him. He has passed a few stones. One really big one. No wonder he is having AD.

I get him all taken care of, settled for the night by 10:15. After a shower I go to bed and cry in my husbands arms. I feel so helpless being so far from my mother when she is so ill. I have no way to get there without leaving Colin under unknown circumstances. WTF am I going to do?

April 23 Tuesday  He is crying in pain from AD at 6 am. I go out, his catheter bag is empty, he and all his pads are wet. I change him, the bed, wash him down. There are more stones. He cries again. After I have him washed for the second time I start his BMP. The nurse calls, says we should be hearing from a Urologist by the end of the week (meaning probably 10 days). She recommends we go the the ER so he can get the tests started that will inevitably be ordered by the doctor. Plus they could do some treatment. He refuses not wanting to wait for hours and hours at one time.

While he is finishing his BM, I call the hospital. I talk to the doctor. She confirms what has been said. Mom is getting steroids but no chemo. Chemo would kill her faster. They will hope she gets stronger, but if she does not, they will make her comfortable. When I ask what kind of time frame she is talking about she tells me if mom does not improve in a couple of days, she won’t last longer than that. I cannot talk to ask anymore questions. I am numb.

I text my older sister, leave a message for my younger to call our sister. I have to continue to take care of Colin, who is now depressed knowing his care prevents me from going to be with my mom. I tell him there isn’t much we can do.

We finish his exercises, go outside. After we return indoors he gets on the computer while I clean up and make dinner. I call the hospital again and talk to my mom. She sounds so weak, so unable to form as sentence. I plead with her to be strong, hang in there until I can get Colin stable, then we can come to her. For just a few short moments I can speak to her, then  she is drifting off into medicated oblivion.  I hang up and go take care of Colin in a daze.

He is passing more stones, big ones. I save the biggest. We have to go to town tomorrow, pick up prescriptions. I expect to get him up early.

I have him in bed, cleaned, protected and comfortable by 10. We are in bed by 10:30, but I do not sleep well. I have dreams that have many red things. Mattresses, covers, dividers and other things I do not remember. I do remember red. I wake often, then early, feeling fatigued. I am so very tired.

April 24  Wednesday  We have to go to town today.  Prescriptions to pick up, groceries to gather. Our first stop is food. We have a GC to Red Robin, so we use it.  The place is not easily accessible inside, but we manage.  Then the pharmacy. I told 2 people, to their face, to disregard the suppositories. If insurance won’t cover it, I will. We bought our own suppositories. We get the prescription and head home.  I make dinner. After dinner I talk with my sister. She says she did get mom to eat something, but she looks terrible. She also tells me mom will talk about being strong until it is just her and her husband. The she says she just wants to die. I don’t want to hear this. I am not ready for another trauma. I get off the phone, tell my self she will get better. I call the hospital, get a chance to talk to my mother very briefly. I tell her I will call everyday. I say goodbye and cry more. I clean up the kitchen  then get Colin ready for bed. A few more big stones, more headaches and chills. I am in bed by 10:30 but not able to sleep. I keep trying to come up with a plan that gets me by my mother’s side, Colin taken care of and me free from worry and stress.  I think this is a problem without a solution.

April 25  Thursday  We have no hurry to get him up since he needs to be in bed for the nurse visit. She calls and tells us she will arrive around noon.

After his coffee and ROM I call the hospital.  I talk with my step father. He tells me they are taking her home. Nothing is doing anything to help her. She is in tremendous pain. She wants to go home and die. What can one say to that?

The nurse arrives around 1, looks Colin over then talks to us about going to the emergency room. She is convinced it will expedite testing and help resolve the issue as it will not be resolved without intervention. She says he looks good otherwise.

After she leaves I get him up, we talk about going to the ER, decide tomorrow morning would be best. We would rather stay all day than all night. We go outside, he gets on the computer, while I do laundry and clean the kitchen. My husband gets home, we have dinner.

Colin and I talk about how early we need to get going. I researched the best times to go, but we won’t make it between 6 and 9 am. We will just do the best we can. I get him in bed, set up sleeping by 19:30. I am in bed by 11 but sleep is not coming to me. I would give anything to turn off my head for just a few hours. It would make facing the next few days so much easier.

April 16    Tuesday  Cold, partly cloudy.  Again, soaking wet even with a diaper on, his catheter half full with urine in the line. We clean him up, I do his exercises. He still has waves of chills/clamminess that make him very uncomfortable. He cries while I do his legs. I wipe his face, his chest, try to get him to relax. We finish with his hands but we don’t get the whole routine in due to his discomfort. When he exercises his triceps, the chills subside a little, so he keeps doing that. Again, we are delayed in getting up. I change him again before I finish dressing him. Men pee alot! He is up, I make him soup and a sandwich for lunch. He gets on Facebook then the hand cycle. I wash the bed, get out clean linens the make the bed with extra disposable pads. I hate those things as well as his disposable diapers but I don;t see how we could survive this with cloth only. By the time the therapist arrives, the storm has moved in. The winds hand started earlier so I brought all the laundry drying outside in, closed all vehicle windows then made it inside just before the hail started. The therapist’s arrival was not so well timed. He had to come inside through the hailstorm.

Colin still not feeling well, got up in the stander anyway. We did many adjustments to the stander itself, the therapist showed me how to line up his feet, hips so he was straight. By the end of the session he was standing straight, had been for 30 minutes and had no drop in BP. He was tired and sore but was glad he did the therapy.

After the therapist left I called the rehab doctors office so we could go pick up his morphine prescription. This is the controlled substance he takes so we can only take a written one to the pharmacy. I had already tried to order more suppositories but everyone was balking, from doctors to insurance, so we ordered some online. Why eh fuck don;t they just TELL us it is over the counter and it’s ok to not have a prescription?

The office closed at noon on Wed then 4:45 on Thursday. Closed Friday. We will go on Thursday.

That being done, Colin gets on Facebook then his friend comes by. After his friend leaves, I get him in bed, change his wet diaper, get him cleaned, covered with a fresh one on. It won’t last the night. I am hoping his catheter takes more out than his urethra. He was tucked in for the night by 10:30. Woke me up once to cover him, he was still dry. Urine in his catheter.  All good signs.

April 17 Wednesday  My husbands BD. He would work late then was doing out with friends. Colin was again, wet. I changed everything, cleaned him up. The nurse called, said she had a family emergency and had been in Texas. She was coming out today. We did all his exercises. I got him up, on the computer, washed the bed, made him lunch. We were outside in the sunshine when the nurse arrived. We talked about his urination. She said it seems as if he is going from retention to incontinence. If that is the case, a different catheter is in order and we would have to go to a urologist. Ok then, we just have to watch and wait and change him all the time.  I better order more stuff.

She also looks at the state paperwork I have. She says she can bring it back next week all filled out. She is the best nurse ever. She is doing his exam, asking him to breath deeply when a big waft of smoke comes into the yard. Our neighbor is burning, something they should not be from the looks of the smoke. The winds in bringing it right upon us. The nurse leaves, will return on Thursday. We reluctantly go inside to escape the fouled air.

We do more exercises, hang out, look at news reports, chat about stuff.  I have him in bed by 10:30. I did not expect my husband before midnight. He knows to sober up before driving home, or stay in town. By the time I was in bed it was 11:15. Colin got me up around 12:15, my husband came in about 12:45 and we talked for a little while before falling asleep.

April 18  Thursday  My youngest son’s 21st BD.  Colin is wet, it is now almost routine. I clean him up, get him up, clean the bed and get him ready to go. We have a 12:30 sushi lunch date with our friend, then we have to get the prescription, take it to the pharmacy, wait for it to be filled. Colin is still getting chills/clamminess on a regular basis and we cannot figure out why other than neural stuff. Things to bring up to the Neurologist. Maybe the Urologist also, since it seems imminent we will visit one.

We make it to lunch, I receive another awesome basket from my co-worker. Each one is better! This time we have a neck massager, some wine from a really nice Winery, movie passes, a gift card and some candy. She is so thoughtful. I need to make time to thank her. I cannot forget! Sushi is awesome, we have a great visit. I forgot his noon meds. Spasms will be rough today.  Our friend loves the van, as do we.  We make it to the doctor’s office, drop off the prescription, get some ice cream then do some grocery shopping. By then the meds are ready and we head home. We get home just in time for me to say goodbye to my husband. He is having dinner with his family. Colin’s pal is coming over again and we have Indian food my husband brought from his dinner last night for our dinner. Sushi and Indian food, I feel like we are in SF eating great food all the time.  I open one of the bottle from the basket while we have dinner. My husband gets home around 8 and has some too. We really enjoyed it. Colin’s friend leaves about 8:30 then he has a Facetime session with his brother. While he and his brother make faces and crazy noises at each other, I was his bed and put on fresh linens, bed pads. By 9:45 I am getting him back in bed. I change his diaper, wash him up, put on a fresh brief and tuck him in by 10:45.

April 19  Friday At 3:30 he calls me in complaining he is cold. He is soaked, the bed, all pads, pull sheet, blankets. I change everything, clean him , put on a fresh brief, cover him with clean blankets. It takes about 30 minutes.  My husband comes out after the hard part is over. Getting all the layers rolled up, under him, push the wet stuff out, wash under him, him, then pull the clean stuff through. The final thing is the fresh brief, change his supra-pubic catheter bandage (it always gets soaked as well).  “Have I missed the battle?” he inquires. I told him yes, he did. By 4 we are all back in bed.

By 7 I get him his meds, check him. He is dry.  My husband is going to SF for the night so we get him packed and going by 8:30. I get Colin up, we do a BMP then his ROM exercises. The therapist calls to say he has not gotten insurance approval for more visits so has to cancel. We don’t know if he will be able to come back. We have to wait and see. Out patient is the next stage in his recovery process. We are able to do the stander alone now.

I change his wet brief, he gets on Facebook while I clean up and make us lunch. We go outside for awhile. He goes up the driveway with me to bring the trashcans down, We chat about his time in the hospital. Amazing we can laugh about many of the things we have been through. Colin is aware how spoiled he has been having me take care of him. We laugh at how he sent nurses away telling them I would do whatever they wanted to do. I had to learn fast. We talk about him having to deal with someone else handling him , the things he needs to watch out for and things I need to. We spend about 2 hours outside, till the sun is behind the trees and the shade overtakes the driveway.

Inside we get him in the stander. We are alone. It goes really well. He feels like crap, chills/clammy, headache and his BP is actually high. I cannot figure out why. Regardless of how he feels, he stays in the stander for 30 minutes. I get him back in his chair and have him recline for awhile till his BP comes down. What the hell is happening?

He gets on Facebook again while I get dinner ready. I don’t even do the dishes today telling myself I deserve to be lazy. We have dinner, I get hi in bed by 8 as we are going to watch Django on Amazon. I don’t want to get him in bed at 11:30.

We watch the movie, by 10:30 I start to get him ready for bed. When I removed his soaked diaper I am stunned. It is full of stones. Hard, like sand. No wonder he has been feeling so badly. He has bladder stones. They haven’t clogged his catheter yet, it is still filling. But he is passing most of his urine, and the stones, through his urethra. There is a tiny bit of blood. I don;t show him, he is stressed enough. I clean him up, put down extra pads and a fresh diaper. I collect some of the stones in an empty prescription bottle. I give him more water, get him settled by 11:30. I go text my husband for a bit, then fall asleep.

April 20 Saturday I am up by 5:45 to suction him. He is soaked again, his brief has more stones in it. His catheter is completely dry. It must be clogged. I am not going to change it since we only have 1 extra, plus he is urinating and passing the stones. No blood. We talk about keeping him hydrated. I will change the catheter once the stones have passed. I clean him up, get him back to sleep then go research. Could be a number of things. Just need to keep them passing. I let him know we will call the nurse on Monday figure out what to do from there.

Cement workers arrive about 8, finish pouring concrete by 12:30. It is starting to look like a real addition.

I get a call from my sister. My mom is on the hospital. She has been ill, had a biopsy last week after nodules were found on her lymph nodes. She is weak, not eating. I keep wondering how I can possibly get up to Oregon. Colin still has to be suctioned, is now passing stones. How stable is stable enough to travel? I tell my sister to keep me posted. When I spoke to her on Thursday, she was weak, had trouble keeping thoughts. I was told it was the pain medications and fatigue. She is weaker than she lets on.

We do his exercises and have him up by 2. My husband is on his way home from Berkeley with Zachary’s Pizza so we are eagerly awaiting his arrival. We are outside enjoying the afternoon, keeping the dogs off the new concrete.  My husband gets home about 3:30.

We have friends in SF with twin 6 year old girls and a year old boy. My husband was given one task. Pictures. He got a good one of the baby and his father. Then one, just one, of the girls standing on car roofs with their backs to the camera.  I will just have to figure out a way to get over there to see them before they are teenagers.

Colin is streaming a movie so my husband and I go look at the concrete and plan some locations for net ports, outlets,etc.  We have the Pizza, open some more of that great gift wine and relaxed.

When I got Colin into bed he started having his headache and chills again. He urinated through his penis, no stones this time. I made the bed with plenty of protection to keep him from sleeping in a puddle if he leaks. Went to bed waiting for the call to come clean him up.

It came about 6 am.