Friday, February 6, 2015

Ups and Downs

The last few weeks have been filled with more stress than usual. Good times too, but the stress has been weaving its way into daily activities, and has loitered around longer than I'd like.

Last week, Jeff caught his first chest cold since he's been home. We almost made it a whole year at home without him being sick. But last weekend I could hear it in his voice. It was raspy and weak. And his vent tubes would rattle with each exhale - a conclusive sign of congestion.

Because of the high level of Jeff's injury, he cannot cough up any junk in his lungs. His cough is extremely weak. He can't even clear his throat with force. So when the junk starts to build up, I have to suction his lungs with a catheter hooked up to a suction machine. Kind of like vacuuming his lungs. Gross but necessary.

When his lungs are healthy, we only do suction a couple times a week. So I knew it was getting bad when I had to suction him more in one day than the last few months combined. And the stuff coming up was nasty.

I was convinced and terrified that he had pneumonia. Jeff coughed his way through Superbowl Sunday and felt crappy the following day, so Monday night I pulled out all the stops. I emailed Jeff's doctor with a description of what was going on and a request for additional medication if needed. I called our home health company and spoke to the after-hours operator who made a next-day appointment for a nurse to come evaluate Jeff. I started giving Jeff mucus relief pills to help break up the junk. I added an extra breathing treatment that night (and have continued the practice since then). And I emailed my boss letting him know I was taking the next day off. I took Jeff's temperature, monitored his blood pressure, and checked his oxygen levels. Then I stood over him and scowled. He laughed at me because while I was looking directly at him, he knew what I was really seeing in my head were his numbers and his symptoms (neither one of which I was happy about), and I was trying to figure out how I could fix this mess.

By Tuesday when the nurse came, his lungs were, of course, all clear. But Wednesday and Thursday brought more ups and downs in his symptoms. Clear for a few hours, followed by coughing, suctioning, and generally feeling lousy.

Then Thursday night brought a tense scene. When my mom and I were putting Jeff back to bed and turning him to remove the sling, he went into a fit of coughs and gasps. I swiftly turned him over, raised his head, and put the pulse ox on his finger to measure his heart rate and the oxygen level in his blood. It took a few seconds for the numbers to register, but when they did, his heart rate was sky high, and his oxygen level was alarmingly low. He was asking for suction in a weak, labored voice, and the blood was beginning to drain from his face. I knew he wasn't getting enough air. I suctioned him three times quickly. And on the third time, the junk I pulled up just about clogged the suction catheter. He had a mucus plug. And once it was out, he immediately felt better.

So did I.

This was the first time this scene happened at home. But we'd been through it a couple times in the hospital, and because of that we didn't panic. Jeff knew he was going to come out on the other side, and I knew I could get him there.

But what if this happened when I wasn't home? Anyone who stays with Jeff while I'm gone (and someone is always with him) has been walked through the suction process and what to do if Jeff's tubes ever become disconnected. Even Evie knows how to reconnect them. But doing these things in an urgent situation, under pressure, when faced with the real threat of Jeff not being able to get enough air is very different than performing them under benign, what-if conditions.

And so this becomes another source of my stress - being away from Jeff. Especially for several hours at a time. My work has been busy lately. I like being busy, but it's starting to creep into the overwhelmingly busy category, and that means more time away from Jeff. And that makes the stress level climb. Plus there's changes coming at my work. And not necessarily good ones in the way they are going to impact my stress level. This has all been weighing very heavy on me.

So go the ups and downs of this life. Just when I think I've got a handle on things, they go all wonky - and our ability to handle this avalanche of unimaginable stress is once again put to the test.

We've had a period of more downs than ups lately, but the scales are bound to shift soon - they always do.

I, for one, am looking forward to the upswing.

Evie throwing "snowballs" (crumpled paper) at Daddy. 
Some days you throw the snowballs. Some days they hit you in the face.


  1. I forgot to tell you. My blog is

  2. Well it appears my first comment didn't make it. I'm a full time caregiver to my spouse as well. He suffered a massive stroke in July 2012. It took his right side, his voice and all functional means of communication. We communicate mostly with one sided gestures and his facial expressions.
    The care of my husband is similar in many ways to the care for your husband. The emotional roller coaster is very much at the for front of my life.

    I hope to be able to continue commenting, reading, and sharing our common thread.

    Take care of you as best you can and we both know how hard that can be.