Feb 17 Sunday  He is till feeling weak, bloated uncomfortable but his friend is returning to hang out so he wants to get up. He has a large loose BM to clean up, then I wash him, get him dressed, fed and in the chair. He is still having lots of coughing, secretions. I have to remove his cap regularly so he can clear the mucous. It tires him out. I check in through the day, doing pressure, suctioning, feeding and meds. I went out and dug the camping stoves from inside the jeep. We have 2 set up around the kitchen to cook with. The stove will be delivered the first week of March, a couple of weeks to wait.

By the time his friend leaves, Colin is exhausted, aching from so much coughing. I get him back in bed, he has another watery BM. I clean him up and go fix dinner. I suction him after a coughing fit. He doesn’t eat much.  I get him comfortable and watch some show with him. I do some laundry, suction him more, clean him again. By 10 he is falling asleep so I give him his night meds early. He is sleeping before I turn out the lights and go to bed.

I sleep for about 2 hours before he wakes me up.

Feb 18  Monday  I am up at midnight, 1:30, 3:30 5:30 and finally 6. Each time he needs to be suctioned, drinks water. Only at 6 does he need to be cleaned.  I let him rest. The nurse is due to come today and check on him. He sleeps till 10:30, I feed him breakfast. He has trouble staying awake after not sleeping through the night. The nurse comes and checks him out. He has a fever. While she is checking him he has a loose, watery  BM. She is worried about his bloating afraid he may be impacted in his bowels (I don;t see how though). We do a BMP but there is nothing. She gives us a specimen container tells me to ask his rehab doctor to write an order for c diff culture. She wants him to get a nebulizer and will call his Dr to get a prescription. She wants us to continue to get his breathing cleared, give him plenty of fluids, probiotics twice a day. After she is gone he rests some more. I feed him lunch. He is too weak to get out of bed so we do some stretches and exercises from there. I do more laundry, take out the trash, start dinner. He rests, but needs to be suctioned regularly. His secretions are still not bad, just alot due to his inactivity. We struggle through the evening. Another BM, water through his PEG tube every 30 minutes, suctioning as needed. His meds are off so his nerve pain is getting bad by the time I get him ready for his night dose. I need him to rest. We have a doctor appointment tomorrow, are going to get some stuff done that I have to do and meet a friend for lunch. Hopefully, all goes well this time.

Feb 19 Tuesday  He gets me up 3 times during the night. By 6 I have to stay up so we can get ready to head to town. I need to go to the SS office and get my SS card printed with my full middle name, then we go to lunch. Then the doctor, then the pharmacy, then home. It’s raining and cold.

I heat up his area, give him a bath, wash his hair. He has one BM before I finish. Once he is dressed I feed him breakfast. I have started giving him papaya extract for the bloating and he eats them like candy. We get in the car. We have an uneventful trip down.

The SS office is a nightmare. Unfortunately for me, I cannot schedule an appointment for what I need. I get in the check in line, get a number. A31. The board says A12. What the fuck? It is about 11 am. I go out in the car and wait with Colin. I go check the board every once in awhile. Finally around 12:15 I get called back. In 3 minutes I am taken care of. One person had tried to tell me it was a name change. No matter how many times I told her nothing is changing, she insisted. She was wrong. It was just print a new one, send it in the mail. No form, no birth certificate. Where do they find these people to hire?

We head to lunch. The day take a turn for the worse now. Colin orders a nice shark lunch but cannot enjoy it. He spends the entire time coughing. I have to remove his cap and clear up the white mucous blobs he coughs out of his trach. He manages some food, but not much. We get him back in the car, he is still coughing, I am clearing. Once I get him out of the car. he coughs, vomits, coughs more. He continues to cough throughout the doctor visit. The doctor notes the mucous is not discolored, says he refilled all the prescriptions, writes a lab order for the c diff and wants to see him in 7 weeks.

We get back in the car. The instant he is inside the car, the rain starts.  Colin is coughing, having more trouble as he gets tired. I ask my husband to go by the pharmacy. I would not be able to deal without that man. I get Colin home as quickly as is safe.  He has had a large BM after all the coughing so I get him in bed, suction him, strip him down, wash him, get him comfortable.  I scrap a stool specimen. Then when he is resting, I start dinner. We have burritos with leftover chicken. It’s quick and easy to make on the camping stoves. I give him more papaya and his second probiotic. Once again, he is exhausted, feeling poorly. His legs are bothering him, so is his ass. His bed sores have opened up more due to all the washing, irritation so I get him on his side for a bit. Once he settles down, the snow starts. I take some videos to show him. He relaxes and by 10:30 he is sleeping.

Feb 20 Wednesday  My husband call in a snow day. Colin only got me up twice and had one BM all morning. He eats, rests, sleeps, eats. I let him. I suction when needed, give him water every 30 minutes, meds and food, Clean him as needed, but otherwise I let him recover. I hang out when he is awake, putter and do chores when he is sleeping. Too bad the big chores are only piling up. I have 5 rooms that have been neglected, used as storage, that need to be taken care of. The garage, laundry room and back office need to be cleared for construction. I have a massive box full of bills and insurance statements I don’t even know where to begin with. And I get 30 minute time windows every now and then to get something done.  I haven’t even vacuumed in 2 weeks. Spiders and cobwebs have overtaken every inch of the available hangouts, especially the fucked up popcorn ceilings. Who thought that was a good idea? The harder I work, the further behind I get.

By evening he is improving. No fever, little bowel activity, better appetite. We have to go to the doctor tomorrow so I want him to rest well. He needs a neck x ray and I am going to try to get fingerprinted. We need to leave town by 2 so we can be home for his PT. We have dinner, I clean him once more, suction once, hang out for the evening. I encourage him to sleep early so we can be ready for tomorrow. We are in bed by 11.

Feb 21 Thursday  He gets me up three times. By 5:30 I just stay up. I want to leave by 10 so we have time for the x ray and fingerprints before his 1 pm appointment.  He is tired of coughing, tired of feeling bad, tired of suctioning and me wiping his ass. I put on cremes, push chux pads under him all the time. He is put into uncomfortable positions all the time with no ability to adjust anything about them. He is crying when I come in to suction him. I heard it on the monitor. His legs bother him all the time. “If I could move them, they would feel better” he cries. I cannot help him. I can’t so anything except offer patience and support. I cry too.

By 7:30 it is clear we will not be leaving by 10. I scratch the fingerprinting plan. I get him cleaned, dressed and fed. We are in the car, leaving by 10:30. The x ray lab is in the same building as his Dr so we head straight there.  He is not coughing as much. He is the only x ray patient so we are done and in the doctor waiting area by noon. We wait until 12:45. Colin falls asleep in the chair. In the exam room Colin is coughing again.  The doctor asks about who will follow the stool specimen results, we have no idea. We see Pulmonary next week, which pleases the doctor. His office will be on the same medical database as the rest of Colin’s medical entourage next week so information will be available. We make an appointment to see him in a month to follow after the next round of specialist visits.

Colin, as usual, wants In and Out. And, as usual as soon as we order food he has a coughing fit. I wipe the secretions away while we are in the drive thru and by the time we park to eat, he has cleared enough to finish his meal. By 2 we leave for home. On the way he needs suctioning and has a big BM from the coughing.

At home, I get him in bed, suction him but don’t get him changed before his therapist arrives. He says we will just do it later. While he is having PT I change my bed sheets and clean the master bathroom. I finish dishes from the morning, start dinner, feed the dogs. His therapist finishes then tells me he is not authorized to come back. Insurance only covers 6 visits. I ask about Medi-Cal, he doesn’t know. He will put in another request just to see what the insurance will do.

I need some wine.  I open a bottle when my husband gets home. We have dinner and catch up with The Walking Dead. By 10:30 I am cleaning Colin before giving his meds. We are all so tired. My husband is in bed long before me. I manage to get there near midnight, only to be up again at 2.

I stumble out to suction him, give him some water. In a daze I can’t believe this is my life. I have less time to do anything than at any other time in my life. Not work and college, single professional parent or parent of teenagers. Nothing prepared me for this. Or maybe everything did, who the fuck knows?

Feb 12 Tuesday  I let him sleep in. We slowly get ready. I give him a bath, wash his hair. Take my time getting him dressed. He has to be cleaned up twice. We have a 2 pm appointment and were going to try to meet a friend for lunch, but his illness is taxing on both of us. He still has runny diarrhea and his head will start to throb at odd times. I move his leg, raise the head of the bed, get him in the chair. Anything sets him off into moaning agony as I stand by and hope his head doesn’t explode. We barely manage to get to the doctor on time. Since this office is located by the hospital there is not a single disabled parking spot available anywhere.I end up going up the parking garage levels until I find enough space to get him out. Then I have to go down hill with him to get him to the building.

It’s the neurosurgeon today, we are seeing another PA. We spend 45 minutes in the waiting area filling out form with the same information they cannot get from the hospital. We finally get into the office and spend another 25 minutes waiting until the PA sees him. He asks about his surgery sites but doesn’t seem concerned about the headaches. He spends 5 minutes looking up Colin’s original antibiotic order and, sure enough, he was supposed to stay on the oral that was not refilled by any of the doctors. The oral I called everyone about to tell me it was ok to be off of it. All of them said yes. WTF?! Nobody could take a few minutes to check the order? That oral would have kept the C Diff in check, he tells us, and Colin would not be sick.  Fuckers. The PA wanted to schedule an appointment with ID to get more antibiotics but I put him off by telling him we have an appointment with them soon. He wants us to get a neck x ray soon, gives us the paperwork and we head out. I push him up the incline for each level to get him to the car. By now, Colin has had another BM and his head begins to hurt in mid transfer. He is screaming in pain halfway in the seat. I cannot do anything except listen to his wailing echo through the garage. It lasts about 4 minutes. I finish the transfer.

Since he had a BM I put a pad down on the car seat and had to stop to adjust him better. He had another head pounding episode. After all the agony, he still wants to go to In and Out, again.  So we go. Another #2, animal style, with a coke. I get a chocolate shake and share his fries. We have a pleasant meal. The pleasantness is short lived. We are in the drive through to pick up prescriptions and he is coughing. I remove his cap but the coughing is so hard so soon after eating he vomits.  Good thing I packed a bunch of extra bed pads. They work for many things besides bed stuff. He coughed up a good deal of stuff also, I wiped it up. All while we waited in line. Once we got the order, I parked and we spent about 15 minutes getting him cleared and as comfortable as possible. He had had another BM during his coughing fit. He was miserable.

I got him home, got him in bed, cleaned him, suctioned him and gave him some meds. He passed out for a good hour before recovering from his day. While he was resting I started another sanitize wash load, washed the chair, cushion, slide board and car. I unloaded everything, then collapsed in a chair. My back was screaming, my shoulders ached. I was so tired I could hardly move. I felt the muscles begin to stiffen as soon as I sat down. The PT called and Colin asked if he could come by tomorrow just to stretch him out. He was worried about his ROM. It was scheduled for about noon.

I made myself move to give him a tube feeding and his night meds a bit early. He was so tired and in pain. He had another BM before the end of the night. After cleaning him and changing the bed pads, we were both ready to sleep for a month.

Feb 13 Wednesday   I let Colin sleep until about 9. He had to be cleaned up before coffee. His med schedule has been off so he has muscle spasms. His legs are strong and wrestling them while cleaning him is no easy task.

I get him ready for stretches and he has a good PT session. I hard started cooking his food just as his therapist arrived. His whole session he just wanted to eat.  Once he was able to have some food and juice, he felt a bit better. He still had loose bowels, but the frequency was diminishing.

While he had been getting his therapy I was researching antibiotics and C diff. Why the hell they don’t tell people to take probiotics while on antibiotics is beyond me. Seriously doctors have kickbacks from pharmaceuticals, at the very least, More likely, major investments.  Recent studies show how the natural flora is a huge part of the immune system. When the body is out of balance , you are fucked up! We started Colin on probiotics today. Fucking bastards don’t give you all the information or proper treatment to keep you healthy. What a scam.

Colin rested for the rest of the day, still feeling weak and “out of it”. The diarrhea continued. My husband brought Mediterranean food home for dinner so I wouldn’t have to cook. We were trying to get Colin back on his med schedule so his night meds came after his now nightly clean up and he was sleeping by 11.

Feb 14 Thursday He woke me about 3 for water. Then woke me again at 5 to be cleaned. I gave him his morning meds by 7 and let him sleep in. He didn’t want to wake up till almost 11. He needed suctioning and cleaning by then. After he ate, took his now daily probiotic,  I got him comfortable and did all his ROM. I gave him a bath, clipped his nails. I laid him on his side to give his bottom a break.  He listened to music and watched some shows. I did the usual chores, ordered some drain sponges, rubbed his shoulders. It was a day to rest, with only 2 loose BM’s, I rested also. No fever, no headaches, minimal diarrhea, we could be over the worst of it.

My husband treated us with Indian food for dinner. Colin ate as much as he could but it was pretty spicy. He was still tired, not feeling as good as he could. We all watched the season finale of Downton Abbey, then I did the nightly cleaning, medications and final adjustments so he could sleep as long as possible.

Feb 15  Friday  He woke me about 4 for water, then 5 for suctioning. I let him sleep after his meds at 7 until about 9. He had a friend coming to visit today so we had to get him ready. He had a loose BM, still a bit of diarrhea, less than before though. Now that we were moving him more, his congestion was loosening up, he was coughing, needing to be suctioned. I had him ready and was just getting him in the chair when his friend arrived. I left them to hang out and visit. I only went in to do pressure relief and push water on Colin. My husband would be home later having dinner with friends,  so I opened some wine and relaxed. I made us all dinner, hid friend left about 9 and I had Colin in bed, cleaned, meds given and him falling asleep by 10:30. My husband arrived home about 11:15, the wine was gone, I was ready to go to bed.

Feb 16  Saturday  Colin wakes me at 3 for water and positioning. 5:30 for suctioning, 7:30 I give him meds. . His friend will be here about 12:30. I take my time getting him cleaned, dressed and fed. He is in the chair waiting for his visit by noon.

I have them go outside for awhile. My husband is doing some electrical work, the power will be off, it’s a nice warm day. They spend a couple hours outside visiting. I go out to do pressure and make him drink water. He has to have his cap removed so he can cough up stuff. Otherwise he enjoys the sunshine while I do chores, try to help my husband. He changed a light, needs to replace some part in the kitchen light. All goes well.

By about 2 they are back inside in Colin’s space, hanging out. I relax for a bit with my husband, periodically tending to Colin for pressure, water, suctioning, etc. I get ready to make dinner. Garlic is chopped, potatoes in the microwave, skillet with olive oil on the stove  I turn on the stove and..nothing.  No lights, not any burner, not the oven, not the clock.  Well fuck. We check the fuse box, the breakers, everything is fine. Voltage gets to the stove, but something is not working. I put the garlic in the fridge, pull out the griddle and make grilled cheese with soup. My husband takes the stove apart.  He just rebuilt the inside about 5 years ago. All the switches, the wires, connections, coils, everything replaced.  Now nothing. Damn thing is just over 20 years old ffs. Why break now?

After his friend leaves, Colin needs to be put back in bed. He has had a big BM, he has been coughing more. I clean him up, suction him, change him for bed, give him some pain meds. He passes out. My husband and I spend a couple of hours looking at stoves to replace the one we have. We take measurements, look at financing options and make a decision. In the morning, we will buy a new stove. It won’t get here till early March so I will need to find the camping stoves and propane so we can cook over the next few weeks.

Colin gets his meds around 10:45 then we all go to bed. He is getting better, but very slowly.