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?