Waiting for Better

Last Monday we were so excited to be busting out of the hospital. Jeff had to go back for an outpatient procedure in the morning, and we were home by late afternoon.

Here we are - all smiles - leaving the long corridors and harsh overhead lights behind us.

But Wednesday came along, and Jeff began showing signs of pneumonia.

Our bedroom has turned into an infirmary. We are exhausted from our overnight watch that was filled with breathing treatments, suction, constant monitoring, anxiety, and wrinkle-inducing worry.

Jeff's oxygen levels are low. His secretions are thick. He has a fever. He is so tired, yet he's afraid to sleep because he doesn't want to wake up gasping for breath. Can you imagine the fear of not being able to breathe? Jeff lives it everyday - even on good days. I don't know how he does it.

I am doing my usual when this happens. Bolstering up my calm, controlled exterior and falling apart on the inside. My stomach lurches, producing painful acid, reminding me of the stress that never dissipates. My face looks ten years older on days like these, the worry etching itself into my skin.

I am Jeff's forever on-call nurse. I hover over him quietly. Watching his uneasy countenance. Checking his numbers. Caressing his hands that he cannot feel. I leave the room briefly to sit at the computer and chart my notes (aka this blog post). Maybe to do some laundry. Or get something to eat. But I spend the majority of my time with him. Watching him. Comforting him. Doing my best to take care of him when scary stuff like this happens.

Our home health agency is involved. We have new medications on order, and a mobile chest xray unit on its way to our home. We are doing our utmost to handle things here.

Another trip to the hospital is the last thing we want.

Because a hospital is a dangerous place for Jeff. His last hospital stint, just a few weeks ago for a kidney stone operation (which deserves its own blog post - it was that treacherous) turned into a fiasco. I can't accurately count the number of ventilators he's been hooked up to during that stay plus the outpatient visit from earlier this week. Each ventilator breathes a little differently, forcing Jeff's lungs to adapt to a constantly changing pressure environment. Multiple vents +  multiple vent circuits + increased suctioning = compromised lungs.

How can a place that once saved my husband's life now be such a threat to his health? I'm really struggling with this right now.

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I'm not even sure there is a cohesive point to this post. Maybe just to illustrate how fast things can change in our world. How conversations filled with laughter and lightness can turn heavy in an instant.

It's days like this where I can feel the pressure of this life pushing down on us. Almost like the ceiling is creeping downward, inching toward us, reminding us of its intent to crush us.

Some days it gets frighteningly close. Today is one of those days.

And so we wait. Wait for the moment when the magic button is found and pushed, and the ceiling starts to retreat. When shoulders feel lighter and breathing (quite literally) becomes easier.

The waiting is hard. But we've done it before and we'll do it again.

Together. Always.

*** UPDATE ***

It's been two weeks since I posted, and let me tell you - it's been a helluva two weeks.

But I am so happy to be able to say that Jeff is better. His pneumonia has been kicked to the curb. And the best news of all is that we handled everything from home!!

It was rough - really rough. In fact, there was one morning early on where I had our bags packed. I had Jeff dressed and his wheelchair and vent charged. We looked at each other and just shook our heads. We were about ready to throw in the towel and go to the ER.

I decided to talk to the nurse one last time. She confirmed that there was pneumonia in his right lower lobe. She told me I needed to get his oxygen levels up. They needed to be at least to 92 and holding (they were at 87 at the time - way too low). She told me to turn him and suction him. Do the breathing treatments every 4 hours - even through the night. But I had to get those numbers up soon. Or else our only option would be the hospital.

So I hung up. I got the suction machine ready. I turned Jeff on his side and percussed him - I basically used his back as a bongo drum. I had to loosen up the secretions. I turned him back onto his back, lifted the head of the bed, and suctioned him.

What came up looked like something out of The Creature From the Black Lagoon.

Jeff's oxygen immediately jumped up. Now he was at 91. There was color back in his cheeks.

We smiled hesitantly at each other and nodded. We were onto something. Our ER plans were put on hold.

And so this became the new routine. Breathing treatments, turning, suctioning. Repeat.

We did this every 4 hours. 

For a week.

After the first 24 hours, my body was incredibly sore. I'm used to turning Jeff, but usually only once or twice a day. Now I was doing it 6 times a day. My hamstrings, lower back, and shoulders were begging me not to make them work any harder. But I pushed them. And by the end of the second 24-hour period, they were good to go.  

Jeff was entirely worn out. His body, his immunity beaten down. He didn't get out of bed for 7 days. He stared at the same TV, the same walls, the same everything for 7 days straight. 

I can't believe he didn't go crazy.

Slowly things started improving. Secretions started thinning. Fever started to diminish. Heart rate began to lower back to a normal level. Oxygen levels continued to climb. 

We began to breathe a little easier - literally and figuratively.

Yesterday we got out of the house for the first time. Jeff had an appointment with the urologist to wrap up this business with the kidney stone. The appointment was one month after his surgery to have the stones removed. It's crazy to think how much has happened in that month. What started out as a procedure with a projected one night hospital stay turned into a 4 night stay, that turned into an outpatient procedure a week later, that turned into pneumonia a couple days after that. 

The kidney stone that turned into a snowball that came barreling down the side of SCI mountain.

I'm just glad it's behind us now.

Jeff still isn't quite back to normal yet. We're still dealing with residual issues that just need more time to fully clear up. 

But we're well on our way back to our new normal.

Getting ready to watch a movie

Us with a 'get well soon' pick me up!

Evie's drawing to help Daddy feel better

These two ... They sure are my everything.