Friday I left him in the step down unit with hopes he would be returning to rehab. I went home and had a good evening with my father and sisters. Even though my dad had a cold, it was wonderful to be with all of them again.

I was awestruck at the amount of work they had done and more grateful than ever they were able and willing to make such a long trip. They didn’t get to visit Colin again due to Dad’s illness so they last they saw of him was in ICU, unable to speak.

Friday night I made Salmon, potatoes and broccoli. My husband made them margaritas. We laughed, harassed our father about his selective hearing, put him to bed after dinner and I followed soon after.

Saturday we were able to get rid of a few things. My family left around noon and we relaxed for the rest of the day. Sunday we moved all the furniture out into the now empty garage. I looked for hospital beds, one sounded good so I planned to go look at it.

I packed for the week, said goodbye and drove to town. Going to see the bed made his injury seem more real and permanent I didn’t like the idea of getting one, let alone looking at it. I got shitty directions, lost a couple times then finally was able to look at it. It was disassembled so I look at the manual. The height adjustment seemed too low, no higher than under 3 feet. My back could not handle that, even with a mattress and pad.

I thanked the man for his time, told him I would call back when I have more measurements on hand and drove to the hospital.

Colin was back in rehab as of Friday afternoon,but his breathing was still an issue. He felt the cuff on the trach was impeding his breathing , making it difficult to talk and eat. I sat with him for the afternoon, suctioned him several times and watched his oxygen saturation levels. He was around 97% without the valve that allowed him to talk and eat. He would plummet to 91% while eating. He needed to rest periodically and regain some strength by not having the one way valve. He continued his RT but PT was not possible while he was breathing so poorly.

Talking with the RT, they needed to wait for the chain of command to approve removal of the cuffed trach (when patients are ventilated) to cuffless (when patients are eating and breathing on their own). Colin’s biggest challenge is to get his breathing and coughing stronger. If he cannot clear his own secretions, he will not be taken off a trach.

He struggled through the evening, gasping to breath in. Not long after dinner, after suctioning, he just wanted it out so he could rest.  He does not have strong lungs, he has a poor, ineffective cough, he cannot sit up too straight nor lay flat without having trouble. At this point it doesn’t seem to matter whether he walks anytime soon. He can’t do anything if he cannot breathe. RT, mucus pills to loosen whats in his chest, assisted coughing, suction and alot of coughing, gagging on his own. All day, all night. He gets little rest. The more he moves, the more he clears secretions. The poorer his oxygen saturation, the less he can be moved. His x-ray is clear. It must just be regular secretions, hopefully some irritation fro the cuff on the trach. Once they swap out the trach tubes we will know if it is really just the physical obstruction and/or if he has a weaker respiratory system than we want to think.

I finally get him settled in for the night and leave around 11:15. It is so hard to sleep alone when I miss my husband so much. It takes forever to get comfortable my mind will not stop. Colin’s discomfort, paralysis, pain and uncertainty are an incredible weight of sadness. My chest feels as if I have 20 pounds put on it. Yet I cannot imagine what it must be like to work for every breath, every moment. I wish I had faith in miracles. But I only believe in hard work, persistence and faith in what makes us human. The miracle is in his body and how it responds to his mind. They need to work together again. I am hoping for that re-connection, regardless of statistics. Stats are great, unless you are the outlier. Then they don’t mean anything.

Another day in the “step down” unit.  He complains he had 2 more loose BM’s. “What the fuck are they giving me!” , he silently yells. Waiting to be transferred. Boring. I massage his legs, feet, hands. Soak his hands to remove layers of dead skin. I put lotion on him. I wash his face.  We watch a show on the ipad for awhile. We chat when he gets his one way valve in. He has another loose BM. I clean him up. So boring.

PT is delayed, again. Just after I get him ready for PT he has friends show up for a visit. I go out to the waiting room. Try to read, just fall asleep. After 90 minutes I get a call from his ST.She has done his swallow test, he is back on the same diet as before his setback and he wants me back in the room.

I get back in and he is exhausted. PT get him in the chair, his BP plummets. The one way valve is kept in to see how he does. His BP doesn’t go up very much. In the chair, his puff treatment is done, much to his dismay. He lasts only about 40 minutes, then just wants to go back to bed. A friend from work is in the waiting room. She as brought some wonderful gifts, so thoughtful. Books and candles, puzzle, pens and healthy snacks. I am so amazed how generous and supportive people are. It is such a helpless situation. Even I cannot do anything to change what is ahead.

He sleeps from 5:30 to 6:45. My husband brings me dinner from a restaurant his family went to for his sister’s BD. I share some with Colin and push some liquids. He isn’t on IV fluids anymore. The tube feeding has been cancelled. His oxygen begins to plummet all of a sudden, so we call for suction. After suction and RT, he is still having trouble breathing and coughing. I remove the OWV. He says it’s easier now so we agree to leave it off for the night again. He drifts off.

At 7:30 we take the gifts out to the cars. Snacks in mine, my husband has already claimed the puzzled and the books are divided between me (hospital) and my husband (home).

I send my husband to his folks, he has some laundry to do and I go back to the room. He is sleeping still. He stirs when the nurse gives him his meds and I ask how he is. “I am so tired. Why?”  he mouths. “Your visit” I remind him. “The talking and laughing, it’s all hard work for you. Good work, but it will wear you out. You have to work your way up for everything.” He sighs, a tear runs down his cheek. I wipe it off. He drifts off again.

At 9:40 I get ready to turn him. He has had another very loose BM, so I get some pads, wipes and clean him up. The nurses aide helps me and he is ready for bed, clean, powdered, turned and comfy. He gets his sleep med, actually an anti anxiety med so he can sleep, and I tell him to rest.  I kiss his forehead, tell him goodnight and I will return at 8:30 in the morning. I hope tomorrow he really does return to rehab because the step down unit blows.