A day in the hospital as a regular patient begins around 00:30. It may be a medication dosage 2 hours past due or a team that is required to reposition him. Sometimes both. Regardless of how many or what they are doing, they turn on every fucking light within reach and if more than 1, are having conversations as if on a crowded street corner.  Once they leave I get up from the nice fold down bed, readjust his streaming show, his feet, check his catheter and the pillow under his hip. We then get a good block of sleep time until 3:30- 4 am.

When he was initially out of ICU with his tracheotomy he was not able to keep up with clearing the pneumonia secretions on his own. He required deep suction (a sterile technique) 6-8 times per 24 hour period. 2 weeks later he is clearing what remains and needs almost no deep suctions. This means we both sleep for that interval.

3:30-4 am means a breathing treatment and trach care. He has his throat area cleaned, drain sponges and the inner cannula (tube inside the tube in his throat) changed. RT people are very respectful. They work quickly, quietly with minimal major disruptions. They will make sure to do major collar changes during the day to minimize night requirements.

5-5:30 am medications administered hours earlier than we would ever do. 6 am the daily chest X-ray. I have to get up and leave the room for this. Back to dozing u til 7 am, shift change. The protocol seems to be both shift nurses come to each patient and pass the torching person. Since I have been on break I go back to dozing, sometimes even sleep, until 8:30.

Breakfast time. He won’t eat the food brought to his room so I head to the cafeteria with his order. Egg, 1 slice of bacon, OJ. I go to the coffee area and order a medium Peet’s dark roast and provide my own reusable coffee mug. I got a discount once. I have bought coffee nearly every morning with my own container for almost 7 weeks. They are making more off me than they deserve.

Sometime we see a Doctor after. Breakfast. The internal medicine Dr seemed to struggle with the concept of % oxygen. Fortunately RT was in the room so she could ask him directly. Colin is on moisturized air now. No pure oxygen. FYI room air is 21% oxygen. She asks if he can have his oxygen lowered. RT says “no”. Needs to explain the difference between flow and percent. Thankfully there are specialists, like RT, and not just doctors. In any case,she is not the one that will determine his path the fuck out of this place. We need the pulmonary Dr. The one who has not been seen since before New Year’s. When will they resurface?

I feed him, wash his face, comb his hair. On a weekend when I am at the hospital all day I will do his BMP, bathe him, wash his hair, brush his teeth, change his bedding. I get him a light lunch, usually soup. It’s about 1 pm now. We then ask to get him in the hospital “wheelchair”.

It is not really one. Staff calls it the Cadillac chair because it is pink. It is a combination guerney/chair on a base with wheels. It is not easy to maneuver. It reclines down flat like a guerney and they get 4 people to slide him from the bed to this pink thing. Waffle mattress and all. He is then strapped in and it reclines up to a seated position. A chair. By now it is around 2-2:30 pm. At this point RT comes in for his breathing treatment. Impeccable timing. All or nothing.

We need to wait for a team to be assembled for him to go outside. His first forays out required 3 people. Crisis RN, RT, and a “monitor” person. He was connected to a vitals monitor and oxygen. This number decreased to 2 (no RT).  Now that he is off of oxygen he only needs one RN. Even a team of 1 requires assembly. If we get outside by 3:30 he can get sun until sundown, about 40 min. We listen to podcasts and enjoy the outdoors. He is bundled in blankets and his lungs are exposed to the atmosphere through an open tracheotomy. Is this a concern?

We get inside by 4:30. The transfer team will get him back in bed by 5:30-6 pm. I get him dinner after and then we watch some show/movie. We are interrupted around 7 pm for the shift change announcement then again around 8 for the usual off schedule medications.

Another breathing treatment around 8:30-9 pm. His major trach care is done at this time. We can relax and chill until 10 pm. I brush his teeth, put on his night time show, turn down the volume, turn off the lights and make up the fold out couch. I lie down by 10:45.

Medications  “on time” would be given at 10:00 pm. On good nights they get them to him before 11:30. Not often. Since he has been off life support and oxygen, free of monitors and alarms, he has his BP and temperature taken every 2 hours. So 11 pm a visit from a CNA occurs.

Resting in a USA hospital is a  learned skill. I have surprised myself the circumstances and conditions I have managed to find a few hours sleep.

Sleep is one thing in a hospital. The sheer amount of waste is another. Appalling and depressing. There is no way one person can make a difference, but I try. I have a recycle bag in the room, reclaim the plastic pitchers and med dispensers they refuse to reuse. But it is nothing compared to what is discarded daily by staff vis protocol. No doubt for infection control but it truly appears more convenience rather than necessity.  My efforts will make no mark.

So begins 2019. Colin will turn 30 this year. I wonder what challenges and celebrations lay ahead. I know 2018 was a shit year. As someone close to me said, “fuck 2018. Good riddance”.

Entering third week in the hospital, third time on life support. He is too weak following the shock to clear his lungs so the left one keeps collapsing. He is on call for another bronchoscope and a second tracheotomy.

It all happened so fast. So unexpected. I didn’t know the signs. I do now.

I am living at the hospital in the ICU again. Same visiting limitations as before. Kicked out for 90 minutes 2x per day. No food or drink and an uncomfortable recliner to rest in. As usual, there is no sleep in a hospital. The patients lose track of night and day because the staff shows them no difference. Daytime people come in to do procedures or take blood. Talk normal and have conversations. Night time is no different. I mean we had to request the not give him a bath at 4:30 am. Who takes a bath at four fucking thirty in the morning unless required for survival? I really think, and I’m talking with only our experience with hospitals, that if they made some small changes their patients would subconsciously recognize night and day. How about using a headlamp instead of turning on every goddamn light in the room? Talking in whispers instead of joking and laughing. Save regular hygiene for normal times instead of unheearthly hours? Why is it so fucking hard to manage this shit?  The alarms are bad enough. Why have every other aspect completely upended for the convenience of the staff?

I am venting and I admit I am exhausted. I have been here after work, over night for 3 days and will not be able to go home for another 2. While he is hospitalized we do not recieve hours from the state. In order to keep the CG we just got set up, we have to pay them out of pocket. They have families to support. They need to work. I can manage for a few weeks but then I don’t know what we will do. We have nothing to sell, no way to get extra income. I have no sick time left so if I had to train someone new, I would not get paid. We cannot afford that scenario either. We’ll have to figure something out.

Just the usual wait, wait, wait and wait some more in the ICU in the shitty chair. The only positive thing is he actually has a wound care nurse tending his sores. She said the same thing we encountered. The wound was not infected but was stagnating in the healing. We were trying light therapy to encourage it. She has the negative pressure suction thing she has put on it for the past 8 days and it has helped it heal faster.

One month today in the hospital. By the 18th this will be his longest stay in ICU. His tracheotomy is 10 days done but he can only manage a few hours off the ventilator. He went 24 hours and his left lung filled with secretions and he had to have another bronchoscopy. They have started to get him up in a chair for an hour or so. Hoping he can get outside within a few days.

Another Thanksgiving and Christmas in the hospital. I’m so sick of this place. So sick of the limited food they offer. So tired of not being home. I cannot imagine how Colin must feel.