Fear and exhaustion in the hospital go hand in hand and this is our 7th day. It’s frightening for us both that he isn’t breathing better. It’s exhausting for him to find it so hard to breathe and exhausting for me to be sitting at his side, then driving the 25 minutes back and forth, nevermind the emotional toll.
There’s the waiting. We are still waiting for the results of his urine culture taken Saturday, so they can switch him from a broad spectrum UTI antibiotic to something specific for his type of UTI.
I hate waiting. I hate not knowing. I hate seeing him like this.
There’s the frustration and discomfort. I have finally been able to get them to use his catheters from home. I didn’t think to ask the first few times he complained. I just told the nurses he liked ours better. No one suggested we bring them. Finally I asked and I kept asking until someone said yes.
They have these rough ones here and we use the hydrophilic catheters at home. They are so much more comfortable for him. The nurses have never seen them so I’ve showed them how to use them, and they find them much easier, too. I have a lot of information about them on my resource pages.
We both fear the UTI because any infection is bad in someone with neurodegenerative diseases. It’s one of the causes of death in MSA. But the rough breathing is even scarier.
There’s the fear and exhaustion of today and the anticipation of more fear and exhaustion in our future. It’s one thing to know he’s slowing dying of this degenerative disease, and another to think of him choking to death. I asked the nurse to put in a call to the pulmonologist, who called me on my cell. I asked if this was to be expected – that it would take several days to clear. Or was this the best we could hope for? Our new normal.
Basically he said this was our new normal. He wouldn’t have expected Larry’s lungs to be completely clear because he no longer has the strength to fully clear his own secretions. But with the Cough Assist machine to help him cough, and the Yankauwer mouth suction (ironic name, huh?) to help remove what he gets to the top of his throat, we should expect at least more good hours than bad each day. Those will go home with us, if they can find us the cough assist machine, which appears to be causing problems..
I’m so anxious to get him home, but scared, too. He’s been here since last Wednesday and he hasn’t done any walking. They have gotten him to a chair and now to his power wheelchair but not even a few steps. They say he’s too shaky and too weak. I’m hoping it’s because they don’t know how he walks. I want to get him up to standing up multiple times a day at least. But my fear is will I be able to do it alone at home? At least for 24 hours? I need my strength. I can’t allow myself to be in a state of fear and exhaustion. I need to be ready.
A friend is getting my groceries. Another friend is picking our kids up at the airport. Home Health was in and I said yes to everything.
I’m saying yes to any help that’s offered.