We had a week-long getaway- with the intention of a spending family time with our kids and grand kids. Well, it was a long week. Though it was nice to be in the same vicinity with our family, unbeknownst to us Terence had been in renal failure all week long.....
Of course we wouldn't know that because he is on hospice care.
He grew weaker by the day, to the point where we barely made it home- it was looking like he wasn't going to make it through (this) week-end. By Wednesday he was losing his ability to speak and by Thursday had become so weak and confused he was not able to function in any manner on his own.
Last night, after a full day of watching his (lack of) urine output- and having difficulty flushing his nephrostomy tube, I decided to call the nurse and take him into the emergency room.... sure enough- he had a raging kidney infection and was also in renal failure. Poor guy. All week long he kept saying "I feel sick". But all hospice can do is make him comfortable= the morphine pump was scheduled for Monday, August 6th.
Okay, so after a full night in the E.R. and only 6 hours of IV antibiotics he's already gaining lucidity and strength. He's still somewhat confused but nowhere near what he had been just 24 hours ago. Yesterday in his weakened and physically unstable state I turned my back for one moment and found him trying to climb up on the toilet "to take a shower" (each day as he worsened, I had spent the entire week in moment by moment nursing care). By Friday, I found it so difficult and exhausting I finally took hospice up on their "Bath Aide" for Terence. She was a godsend- it ave me a much needed break and she even shaved him. Up until then he had dismissed the offer of a bath aide (for obvious reasons) but by Friday, he was so sick, he didn't even realize someone other than myself was bathing him.
Their mission:" to treat the infection and get him home in his own environment as soon as possible".
I was somewhat dumbfounded and speechless. I asked the doctor if I could take a minute to speak to my family (I was alone in the room). I needed to pray first. Then I called my son in-law Mike. And then I went and got my sisters in the waiting room. We all talked and decided he needed to be admitted. When the doctor came back, he told me that he had spoken with Terence's hospice doctor and they both thought it would be good to admit him and get him on IV antibiotics and just stay a little ahead of everything. He's been on IV antibiotics for 6 hours and is already stronger. During breakfast this morning he had difficulty swallowing and speaking- the doctor here checked hm out and realized he had thrush from several other medications he has been on during his hospice care. So now he can swallow and eat. Those are already four good things; lucidity, feeling stronger (he can move himself on and off the bed with little assistance), swallowing and eating. BIG BONUS. I'll take what modern medicine can offer.
The doctor just made her rounds while he slept this morning. She spoke somewhat candidly with me. She said kidney failure and a raging infection makes one sleepy and weak and to expect him sleep even more often. She said we could probably begin to lower his pain medicine dosages because as his body starts to shut down, he'll feel less and less. She asked me about Terences wishes on his POLST (to be resuscitated). She told me in no uncertain terms that his kidney is weak and failing and as his orders stand right now he is in FULL CODE while he is here in the hospital. She felt that resuscitation would be painful and unnecessary because he is still in renal failure and doesn't have much time left. It scared me a little because if he isn't cognizant, that call is mine to make, and I don't want to ever take away his opportunity to live. It's a weird thing to think about, really.
Any ways she asked me to talk to him about changing it and if he wasn't able to comprehend the question then she wanted to know what my decision was. She said she would be back later to change it (she assumed he would).
He woke up for breakfast about an hour later this conversation. He was confused and questioning me (sternly) as to why he was here in the hospital because according to him, "no one dies from thrush", and when he saw "Multi- Healthcare System- Tacoma, Washington" printed on his bed sheets he was wondering how we got to Washington state ("don't we live in Wyoming?"). He was obviously not lucid, but I decided to gingerly ask him if he wants his POLST orders to remain the same. His reply was astounding: " Sherry; do you know how much someone can hear even when they are asleep? ......NO. I DO NOT want to change my POLST, I'll tell doctor Wong or Wang or whatever her name is...I didn't catch her name- (how could he, he was alseep when she made her rounds!)".
Silence (on my part). Evidently he heard the entire conversation. (A side note here for any visitors- he has always hated to be 'talked over' in the hospital bed. He feels that if we want to talk about "the game" or "Opra's book club"kindly please leave his room- and definitely don't talk over him from one side of the bed to another).