Once again I find myself realizing things can and do get worse. I have evolved to a place of resignation. Things will not get easier. He will always have challenges to face. I will always be the one who takes care of it all. As much as I tell myself I need to accept my life as it is it is such a hard thing to do. I want to look forward to something. Not accept endless days of work, care, managing, fixing and hoping for some shift in the universe that will bring even a few days of relief instead of an occasional few hours.

March was not easy. We did manage to find an awesome cg for him. She began working the first week and by the second she was able to be alone with him. She is another A. We call her the female D and it seems our endless pursuit has paid off. D is gone for awhile so we depend on both As and me. We had to let C go after she failed to make it in several days, came too early one day then had one shift she came sick and asked me to do her job.  Fuck that. Now I work every evening and weekends taking care of Colin.

His pump finally was inserted on the 26th of March. Prior to that time we got the She A trained on getting him in the stander, doing the ric shaw and electrodes, managing his diet and getting him to his appointments. He A has been less inclined to work as his main job is in the busy season. I had to call in a couple times after he bailed the last minute. I don’t think I have any sick time left.

The pump insertion went smoothly. Turns out, we should have kept our mouths shut asking if the baclofen should go first. Hind sight tells us it was a bad move. Going into the hospital was a fucking nightmare. My entire spring break, which I had foolishly planned on getting things done around the house, was consumed being at the hospital. He went in Thursday afternoon. The doctor’s office discharged him from his office, I drove him across the street and we admitted him to the rehab hospital. Turns out every patient is fucking ancient and recovering from a fall, stroke of heart attack.

There were no private rooms in the hospital so we had the pleasure of listening to the deaf older fellow  we shared with yelling at everyone. As usual, nurses were not equipped to care for Colin. I brought all our own supplies and sent 17 hours everyday there. The down side of going in on a Thursday..the hospital shuts down for the weekends. His extensive PT/OT was about 30 minutes. We were bored to death. Nothing to do, nowhere to go and he wasn’t sick. It was horrible.

By Sunday we had to escape se we left the grounds and went to a happy hour up the street. Had beer/wine/appetizers. Just the 90 minute release kept us going till Monday morning. Hopefully this blog is still unread so we don’t get in any serious trouble by documenting our bad behavior.

Monday we told the doctor we were not happy with the progress. Did not make a difference. Tuesday they adjusted the level of baclofen the pump administered to his spinal cord. Wednesday he had to be medically transported across the street (would have taken 2 minutes walking but 20 waiting for transport..liability my ass). His appointment was to follow with the surgery and check the levels.  All was good. They told us he would be discharged on Friday so Thursday night we celebrated by sneaking off for a nice Italian dinner up the street. I had also managed to sneak in a bottle of wine that I enjoyed for a few nights while we endured being stuck in the room. We were very bad patients.

Once home, the pain was still a constant issue. We learned on the 13th that it would be at least a month before they could start administering pain medication since they had to order it a month in advance. That would have been good to know. Too bad they are not up for sharing information until after the fact. Fuckers.  Another potential development is insurance. Colin turns 26 in July, the cutoff age for Obamacare. If he is dropped from my insurance and has only MediCal, we find out he will have to go to Bakersfield to get his pump filled. WTF. Again, information after the fucking fact. What ever happened to disclosure?

Mid April, the 17th, we splurged and went to Berkeley for an outdoor concert at the Greek Theater. We made hotel reservations about a mile up from campus, met Ian there and had a pretty good time. It was very expensive but nice to get away and have some fun. Colin was bundled up well but apparently still got a chill.  By Monday he had a slight cough. We kept it cleared and monitored, watching his temperature. Friday the 24th A called in so I was home with him. We kept him coughing but in bed so he could rest. Saturday he got up for a few hours but felt tired so he stayed in bed Sunday. We kept him coughing and clearing. We felt so confident we were keeping on top of it. He slept on his left side to minimize being awake all night and he felt pretty rested. Monday I went to work expecting him to get up and enjoy the warm sunshine. We were totally off.

I got home around 4:30. He was still in bed, burning up. 101.7 and climbing. If he sat up his oxygen stats dropped to the low 80s. We had to head to the emergency room. One year ago we went for the same reason. We have a lot to learn.

We get the the ER, it is packed. Regardless, he is taken inside within a minute of arriving.  He had to go the resuscitation room and was put on a mask with 100% oxygen. His stats came up. They started the antibiotics. Took a bunch of blood and a chest x ray. Then we waited. And waited.  He was on an emergency room gurney and I was in a chair. A doctor came by around 5am Tuesday saying he was going to be admitted for pneumonia and he would be going to the cardiac/pulmonary care unit. By 7 Tuesday morning we were told it had been the busiest night in their history. We could expect to remain in the ER for awhile as the CPCU beds were hard to come by. The hospital was full. I went to work on Tuesday, got back to the hospital by 3. A had come to stay with him and monitor his care. She would return Wed morning. I spent another night in the chair. The resuscitation room is not private. The other rooms are, TV included. We had the opportunity to hear far too much about far too many people. And they about us also, I am sure. After failing to sleep a second night, cramping in the chair, getting Colin what he needed since the nurses were too busy, I felt like I was 1,000 years old. Every part of my body hurt. I hadn’t showered since Monday morning. I was back to eating shitty cafeteria food and I was behind on my work.

Finally at 5 am Wednesday, after 35 hours in the ER, they took us up to his room. Compared to where we have been, it was a Plaza Suite. I could actually lie down and rest.  I did not get a chance before I left for work. I did ask She A to come in for a few hours Wednesday evening so I could actually return home, shower and sleep.  I was passed out by 7:30. I was up at 6, showered, had coffee, watered the garden and said hi to the dogs. I was able to wear clean clothes to work too!

The rest of April was the usual hospital schedule. Get up, go to the hospital. Leave at 8:30 when She A arrives. Return to hospital till 11pm. Go home, sleep some, get up by 6 so I can be at the hospital by 7. I tried to get She A to come in for a few hours over the first weekend of May but it didn’t work out. I wish D was back. I wish we could find someone reliable to work weekends. I wish I could accept my new life instead of keep wanting it to be different. Or at least, easier.

By Friday, May 1 we knew he had mucous plugs in his left lung that he would not be able to clear. They scheduled him for a bronchoscopy like he had in the ICU when he was first injured. It would not happen over the weekend. Procedures to clear lungs for good lung function are not a priority. So we spent the weekend watching his stats hover low. 88 SpO2 is low. Colin’s will drop to 82. Alarms go off, we change positions, increase oxygen,  watch it creep back to 90 and start again. He is pumped with several antibiotics continuously. His regular medication schedule is completely ruined. He cannot get up, he is weak from low oxygen and grumpy beyond belief. I am sick of the sound of oxygen flowing, alarms going off, other patients yelling, nurses, doctors, technicians in general and the daily trek to the hospital. I’m tired of missing my husband, never spending any time with him, being unable to help with chores, yard work and projects. I miss my home, my life, my freedom.

I spend the day after his BMP adjusting blankets, turning off alarms, helping him cough, cleaning him from a leaked catheter, moving the IV lines, the oxygen lines, changing the channel, shifting his position, getting him fed, drinks, wipe his face, his nose, rub his ears where the cannula rubs, scratch his head. I sit for a few minutes, then up again. I could just leave and let the nurses do it but every time I walk past a room with an elderly person alone, drooped forward in a chair or their bed,  unattended for half hour or longer I hesitate. Then I come in after going home for 6 hours to find out the staff had turned him, moved him, changed the oxygen levels and forgotten to put the call button where he could push against it. He was unable to call when his cannula fell out. He had no oxygen for 15 minutes and no ability to contact anyone, waiting for his stats to drop enough to catch their attention. Then I know I cannot count on the hospital. There is not enough staff.

So more setbacks. Less PT, fewer opportunities to work on strength, movement, adjustment. Little contact with friends, outside activities and just life in general.  I understand we are still in the transition phase post injury. I’m tired of everything being a battle requiring even more time, energy and money. I’m ready for things to settle down, become routine and habit. I want to look forward to tomorrow, not dread the sun coming up every morning.