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I have struggled to write anything down over the last couple of weeks.
our days have been extremely intense and I have been running on empty.
At one point he had lost so much weight, because he could not eat or drink anything, the dietician and the radiation specialist agreed he needed a naso-gastic feeding tube. This is hooked up to a bag of nutritious feed that looks like thick coffee. . He was not on the Oncology ward when the tube was put in, just in a general ward where some of the nurses had little or no understanding of the importance of germs vs a PC patient with a low immune system. One nurse had a runny nose, sniffed a lot, wiped her hand across her nose and continued to hook up his drip. Sad. When I found this out the next day I had harsh words with the nurse in charge. Not happy.
He woke with a raging temperature one morning a couple of weeks ago. I decided he needed to go to Emergency.
They tell you that early on, any temperature and in you must go. His immune system is very low now and infections are the last thing you need.
He was delirious that morning so getting him up and dressed was a challenge. He refused at first. The defiant child in him shook his head and closed his eyes tight in pain. He got up to pee and I noticed it was very dark. Dehydrated as I thought. I left him to pee but hovered around the door as I was concerned he might pass out. He stood with his back to the wall for a bit and when I tried to hold his arm and get him to come out he said "fuck off". I got him sitting on the bed and managed to get a shirt on him. Shoes on? nope. Wouldn't cooperate. I was becoming increasingly concerned . . do I call an ambulance? but they would take him locally . . and then it would take them ages to retrieve all his notes from the Alfred. Do I punch his lights out? and drag him to the car? So I woke our daughter and her man to come help. I knew he wouldn't tell her to fuck off, well hopefully not. She managed to get his shoes on and all 3 of us escorted a wobbly him to the car, in the dark, at about 6am.
We made it to the Alfred ED at 7.30am ish, I ran into the Radiation reception area thinking we might be able to get him seen sooner, nope, not open, so a lovely lady, who had just arrived to work grabbed a wheelchair for us and took us to Emergency. No waiting for PC patients with a temperature. It was a chest infection. Not something we wanted to hear. I was terrified. I had seen the results of the same in my dad, and he didn't survive it.
I struggled to keep it together. I was crying a lot. He was oblivious to most of the day. His fever broke in the afternoon thankfully. I had never actually seen this phenomenon before. I had heard of it many times in movies . . "the fever has broken" . . never really knew what it meant. I had been cold sponging his body for hours and then all of a sudden he had profuse sweating and then nothing. Temp back to normal. Incredible.
4 or 5 days in hospital to make sure the antibiotics did their thing. He was not happy at all.
Home for a few days . . .
Last night, thanks to my rock of a sister , I drank wine and slept more than normal. Thanks girl. I needed the down time.
. . . . . . it's now Sunday the 28th April
He is back in hospital. His feeding tube was blocked on Friday morning. This happens if it isn't flushed with water regularly. He has been incredibly stubborn about his water intake. He needs at least 2.5 litres per day to survive. He was only agreeing to about 480mls . . . . so I was not surprised when it happened. Thing is he has to be in hospital for a new one to be inserted as they have to exray him to make sure it is in the right spot.
New tube is in. Feed is hooked up. Fluids are flowing. Meds are being administered. His bloods are being monitored. All good so far.
His pain has been an issue whilst he has been at home. He seems to have a high threshold and doesn't like having pain meds. However as it was explained to us, our bodies don't like pain, we don't recover as well if we are in pain. If you are in pain, taking pains meds is good, as your body recovers faster.
Today I spent a lot of hours with him. He is having a fun time with morphine as a pain killer. Hallucinating a lot. So much so that he sent me some disturbing messages at 6am this morning telling me that he had removed his cannula and was waiting outside his room . . . paranoia much . . . I rang the hospital as I was concerned he had actually pulled his cannula out and was standing randomly in the corridor . . . . .
The doc has taken morphine injections off his routine . . . he will have to ask for it if he needs it. They are upping his morphine patch to a 10.
I cried all the way home. I have puffy eyes. Damn it.
Sunday night at home with my daughter and her beau . . pizza.
Vader is dragging my ugg boots around the house, weird, Charlotte is out and about sniffing said boots . . . we 3 are going to chill in front of the huge tv soon . . . together. as a family. Simon we miss you. love you. and can't wait til you are back with us.
FUPC !!!!!!!!!
I have struggled to write anything down over the last couple of weeks.
our days have been extremely intense and I have been running on empty.
At one point he had lost so much weight, because he could not eat or drink anything, the dietician and the radiation specialist agreed he needed a naso-gastic feeding tube. This is hooked up to a bag of nutritious feed that looks like thick coffee. . He was not on the Oncology ward when the tube was put in, just in a general ward where some of the nurses had little or no understanding of the importance of germs vs a PC patient with a low immune system. One nurse had a runny nose, sniffed a lot, wiped her hand across her nose and continued to hook up his drip. Sad. When I found this out the next day I had harsh words with the nurse in charge. Not happy.
He woke with a raging temperature one morning a couple of weeks ago. I decided he needed to go to Emergency.
They tell you that early on, any temperature and in you must go. His immune system is very low now and infections are the last thing you need.
He was delirious that morning so getting him up and dressed was a challenge. He refused at first. The defiant child in him shook his head and closed his eyes tight in pain. He got up to pee and I noticed it was very dark. Dehydrated as I thought. I left him to pee but hovered around the door as I was concerned he might pass out. He stood with his back to the wall for a bit and when I tried to hold his arm and get him to come out he said "fuck off". I got him sitting on the bed and managed to get a shirt on him. Shoes on? nope. Wouldn't cooperate. I was becoming increasingly concerned . . do I call an ambulance? but they would take him locally . . and then it would take them ages to retrieve all his notes from the Alfred. Do I punch his lights out? and drag him to the car? So I woke our daughter and her man to come help. I knew he wouldn't tell her to fuck off, well hopefully not. She managed to get his shoes on and all 3 of us escorted a wobbly him to the car, in the dark, at about 6am.
We made it to the Alfred ED at 7.30am ish, I ran into the Radiation reception area thinking we might be able to get him seen sooner, nope, not open, so a lovely lady, who had just arrived to work grabbed a wheelchair for us and took us to Emergency. No waiting for PC patients with a temperature. It was a chest infection. Not something we wanted to hear. I was terrified. I had seen the results of the same in my dad, and he didn't survive it.
I struggled to keep it together. I was crying a lot. He was oblivious to most of the day. His fever broke in the afternoon thankfully. I had never actually seen this phenomenon before. I had heard of it many times in movies . . "the fever has broken" . . never really knew what it meant. I had been cold sponging his body for hours and then all of a sudden he had profuse sweating and then nothing. Temp back to normal. Incredible.
4 or 5 days in hospital to make sure the antibiotics did their thing. He was not happy at all.
Home for a few days . . .
Last night, thanks to my rock of a sister , I drank wine and slept more than normal. Thanks girl. I needed the down time.
. . . . . . it's now Sunday the 28th April
He is back in hospital. His feeding tube was blocked on Friday morning. This happens if it isn't flushed with water regularly. He has been incredibly stubborn about his water intake. He needs at least 2.5 litres per day to survive. He was only agreeing to about 480mls . . . . so I was not surprised when it happened. Thing is he has to be in hospital for a new one to be inserted as they have to exray him to make sure it is in the right spot.
New tube is in. Feed is hooked up. Fluids are flowing. Meds are being administered. His bloods are being monitored. All good so far.
His pain has been an issue whilst he has been at home. He seems to have a high threshold and doesn't like having pain meds. However as it was explained to us, our bodies don't like pain, we don't recover as well if we are in pain. If you are in pain, taking pains meds is good, as your body recovers faster.
Today I spent a lot of hours with him. He is having a fun time with morphine as a pain killer. Hallucinating a lot. So much so that he sent me some disturbing messages at 6am this morning telling me that he had removed his cannula and was waiting outside his room . . . paranoia much . . . I rang the hospital as I was concerned he had actually pulled his cannula out and was standing randomly in the corridor . . . . .
The doc has taken morphine injections off his routine . . . he will have to ask for it if he needs it. They are upping his morphine patch to a 10.
I cried all the way home. I have puffy eyes. Damn it.
Sunday night at home with my daughter and her beau . . pizza.
Vader is dragging my ugg boots around the house, weird, Charlotte is out and about sniffing said boots . . . we 3 are going to chill in front of the huge tv soon . . . together. as a family. Simon we miss you. love you. and can't wait til you are back with us.
FUPC !!!!!!!!!
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