Oh what a night, It's 2:30am and I awake once again tonight in pain. I mouth breathe in my sleep. I had some more Morphine at 12:30, and it did work, but only so much. I ended up giving in and using the Linocaine to numb... but it, like the pain meds, only go so far. At least I have web and TV. At home I seldom watch TV, but in this small penthouse suite (lol), funny what one will do.
We do have an humidifier running now. I don't have any of the junk food here I have at home though. I need to go home.
Will Add More Later
Saturday, December 19, 2009
Sat 19th- End Of Day
It's been a very busy day today. Mom and Charlie came by then mom and day, Misty & Matt, Megan, Richard & Missy, and the grand-kids. All in all pretty busy day. The company was nice. The grand-kids weren't allowed up on this floor or in the room, but Josh and Brandon were insistent. The let them come up but they weren't allow to touch anything or come too close. I figured high five's didn't count, lol. Mom and dad stayed in the room and had Denise or I knew they were coming that fast we'd have waited long on the pain meds. I have to hit the premium time after taking the Morphine so that I can get the fullest effect. That ended up being done in front of them, wich I hated to do, Megan was also in here. Ended up dad tried to make small talk, I guess to take my mind off of it, mom never said a word, while I heard Denise snap at Megan no! She filmed it, lol.
By the time the treatment was over mom left to go send Matt and Misty up... Misty said mom cried. I viewed the video that Megan done while Denise addressed my wounds, it is bad. I'm still at odds as to Megan putting it up or not.
Misty had Megan take this picture of me and her. This is my oldest daughter. Pretty good picture, eh? Looking at this picture tonight made me realize that if it all ended tomorrow, I at least done 3 things right in my life and have had many blessings bestowed upon me... this being one of them.
We have excellent nurses again this night, hopefully my last one. I declined the sleeping pill after awaking in a freaked out state this morning. I don't understand a lot of this, but the one thing I do is something that I have always understood, moderation.I am going to attempt to talk with Panella about this internal swelling of my throat.http://lightnight99.blogspot.com/2009_12_01_archive.html
By the time the treatment was over mom left to go send Matt and Misty up... Misty said mom cried. I viewed the video that Megan done while Denise addressed my wounds, it is bad. I'm still at odds as to Megan putting it up or not.
Misty had Megan take this picture of me and her. This is my oldest daughter. Pretty good picture, eh? Looking at this picture tonight made me realize that if it all ended tomorrow, I at least done 3 things right in my life and have had many blessings bestowed upon me... this being one of them.
We have excellent nurses again this night, hopefully my last one. I declined the sleeping pill after awaking in a freaked out state this morning. I don't understand a lot of this, but the one thing I do is something that I have always understood, moderation.I am going to attempt to talk with Panella about this internal swelling of my throat.http://lightnight99.blogspot.com/2009_12_01_archive.html
Saturday... 19th morning
Well, we're still here. This morning Panella stopped in and said while progress was being made, we are a ways yet, but maybe tomorrow. I stayed up late last night so that Denise could get some much needed sleep, she doesn't get worrying about my mouth breathing.
Mom and Charlie stopped in and brought a humidifier and some stuff we needed from home that didn't get here due to the snow yesterday. The got to see first hand the intense pain cleaning and dressing the wounds cause. The nurse is going to check on something to numb the outside of my throat while the wounds are being addressed. By gollies would that ever be great.
So far, once while eating and once while taking liquid meds, I've gotten choked severely that have produced small pieces of meat that rots and breaks away. Much like the outside only even more painful. Panella said that Green would not wait until it completely heals before restarting. While I kinda know that, I'll be damned if I will let him start before I am ready. This is still my body and I am still in charge of it.
Well that is today as of 2pm and where we stand. My rant for today, lol. We've got a good nurse again... thank God.
Mom and Charlie stopped in and brought a humidifier and some stuff we needed from home that didn't get here due to the snow yesterday. The got to see first hand the intense pain cleaning and dressing the wounds cause. The nurse is going to check on something to numb the outside of my throat while the wounds are being addressed. By gollies would that ever be great.
So far, once while eating and once while taking liquid meds, I've gotten choked severely that have produced small pieces of meat that rots and breaks away. Much like the outside only even more painful. Panella said that Green would not wait until it completely heals before restarting. While I kinda know that, I'll be damned if I will let him start before I am ready. This is still my body and I am still in charge of it.
Well that is today as of 2pm and where we stand. My rant for today, lol. We've got a good nurse again... thank God.
Friday, December 18, 2009
Dec 18th, Part 2
Part 2 -
It has been a weird day... very weird. Green came by and sat on the bed and chatted for a while. We discussed the treatment and some of the sour outcomes so far that we're trying to heal from. We briefly discussed the continuation of the treatment. Green wants me to call his office on Tuesday. I talked with him about the crazy but sweet RN that seems to vanish when called. I told him I had waited 4 hours on pain meds and acid reflux pills. How I had rung into the station 5-6 times for my IV machine to be reset before finally giving up, putting on my shoes and jacket, grab my IV machine and went to them. A lady that attended us briefly between shift changes saw me, fix it, and said she'd get my meds. Within 10 minutes, it was all done correctly.
Later on, Panella came by and said that my white blood cells was up to 1.01... we're making some improvements. He said maybe tomorrow... but probably not. I went over the events with the nurse that could have played a part in the movie, "Misery". I'm not sure just how much Panella listened to, but it didn't matter. After my chat with Green, we had another nurse that was good. I think it even shocked her after she stepped into the corner and stepped where it was sticky. It was about 1/2 of a bag of antibiotics she let run out. 4 hours for a acid reflux pill and pain pills?
I did explain that I didn't want to be here and could do better at home. I am on the laptop so we will not get detailed until I get home on a computer. I also have a close-up picture of my throat so that when I write about Denise cleaning my wound, you will see what I am talking about. I'm not sure how much farther I will go. This has become a mess, I have become a mess. I talked on my cell phone and on the hospital phone tonight and it wasn't until Denise handed me back the cell and she told me it was gross and needed cleaning did I see all the skin pieces plastered on the phones.
We've been cleaning the wounds since I've been here. I think the nurses were suppoae to do it but after nobody offered, Denise said if they would bring the supplies that she would. Within 15 minutes... supplies! You have to use a 50/50 mixture of saline and hydrogen peroxide and bandage strips. You lay the now soaked (we used 4 inch strips) of a gauze like stuff on the injured part. We do this in a 2 stage, 1 for front and side, the other part for the back and side, mine is a full circle. Be prepared. The more you do this the worse it hurts so pray you don't get a nurse that screws up your pain meds like I did. This we repeat until I can't stand it of about 2-3 times. Then you pat dry, removing dead burnt skin, believe me... it will go layers. Anyway, you then apply the lotion your doctor has approved or one that worked for someone you know. Yep, you are about to break those Pearlie Whites again out of pain, lol. Eventually the lotion will ease the pain in in just a few hours, you are ready to do it again. You do this until either you run outta skin, or outta dead skin.
Please note caregiver. The lesions, burns, and blisters are but a mere reflection of what the inside looks like. Actually the inside is worse I'm told... and I'd have to agree. It is not going to be easy for the victim no matter how much you try, but you can make it as painless as possible. Also please note that there is no reward for getting done faster. When the skin just sloughs off, it will wait for you to come and get it. The again, it may await a phone to attach itself too, lol. Like mine did.
The white places are dead skin and meat that just keep sloughing off. It's not the nest pic in the world but not bad for a cell phone either. Remember, the outside shows only a portion of what the inside looks like.
I have a fever of 101.3 tonight again. The nurse went to get a Tylenol pill, hopefully it will not be a repeat of this morning.
It has been a weird day... very weird. Green came by and sat on the bed and chatted for a while. We discussed the treatment and some of the sour outcomes so far that we're trying to heal from. We briefly discussed the continuation of the treatment. Green wants me to call his office on Tuesday. I talked with him about the crazy but sweet RN that seems to vanish when called. I told him I had waited 4 hours on pain meds and acid reflux pills. How I had rung into the station 5-6 times for my IV machine to be reset before finally giving up, putting on my shoes and jacket, grab my IV machine and went to them. A lady that attended us briefly between shift changes saw me, fix it, and said she'd get my meds. Within 10 minutes, it was all done correctly.
Later on, Panella came by and said that my white blood cells was up to 1.01... we're making some improvements. He said maybe tomorrow... but probably not. I went over the events with the nurse that could have played a part in the movie, "Misery". I'm not sure just how much Panella listened to, but it didn't matter. After my chat with Green, we had another nurse that was good. I think it even shocked her after she stepped into the corner and stepped where it was sticky. It was about 1/2 of a bag of antibiotics she let run out. 4 hours for a acid reflux pill and pain pills?
I did explain that I didn't want to be here and could do better at home. I am on the laptop so we will not get detailed until I get home on a computer. I also have a close-up picture of my throat so that when I write about Denise cleaning my wound, you will see what I am talking about. I'm not sure how much farther I will go. This has become a mess, I have become a mess. I talked on my cell phone and on the hospital phone tonight and it wasn't until Denise handed me back the cell and she told me it was gross and needed cleaning did I see all the skin pieces plastered on the phones.
We've been cleaning the wounds since I've been here. I think the nurses were suppoae to do it but after nobody offered, Denise said if they would bring the supplies that she would. Within 15 minutes... supplies! You have to use a 50/50 mixture of saline and hydrogen peroxide and bandage strips. You lay the now soaked (we used 4 inch strips) of a gauze like stuff on the injured part. We do this in a 2 stage, 1 for front and side, the other part for the back and side, mine is a full circle. Be prepared. The more you do this the worse it hurts so pray you don't get a nurse that screws up your pain meds like I did. This we repeat until I can't stand it of about 2-3 times. Then you pat dry, removing dead burnt skin, believe me... it will go layers. Anyway, you then apply the lotion your doctor has approved or one that worked for someone you know. Yep, you are about to break those Pearlie Whites again out of pain, lol. Eventually the lotion will ease the pain in in just a few hours, you are ready to do it again. You do this until either you run outta skin, or outta dead skin.
Please note caregiver. The lesions, burns, and blisters are but a mere reflection of what the inside looks like. Actually the inside is worse I'm told... and I'd have to agree. It is not going to be easy for the victim no matter how much you try, but you can make it as painless as possible. Also please note that there is no reward for getting done faster. When the skin just sloughs off, it will wait for you to come and get it. The again, it may await a phone to attach itself too, lol. Like mine did.
The white places are dead skin and meat that just keep sloughing off. It's not the nest pic in the world but not bad for a cell phone either. Remember, the outside shows only a portion of what the inside looks like.
I have a fever of 101.3 tonight again. The nurse went to get a Tylenol pill, hopefully it will not be a repeat of this morning.
Dec 18th, - Another Day
Rough night last night. I mouth breathed and Denise would wake me up so I could stop, but it still done damage. I spit up blood on and off again. My O2 stats were low again so I wore Oxygen all night and suppose to have it on now. I kept a low grade temperature all night and took Tylenol.
I'm getting worried, acid reflux is a big no-no. It's almost 9:30 and we've asked a few times... still no meds. But they don't want me bringing my own? Luckily I don't need my blood pressure meds, my blood pressure has stayed low, not sure what that is a sign of. Couldn't eat this morning, too sore, but the food looked good.
Called yet again for my acid reflux meds... still nothing. I sent Denise after some over the counter ones. She was afraid they would kick me out but hey, making me worse off isn't helping. She thought the same thing when I stopped the radiation, now they are glad I did.
The nurses last night... on th spot. So much differnt than today's, save one.
I'm getting worried, acid reflux is a big no-no. It's almost 9:30 and we've asked a few times... still no meds. But they don't want me bringing my own? Luckily I don't need my blood pressure meds, my blood pressure has stayed low, not sure what that is a sign of. Couldn't eat this morning, too sore, but the food looked good.
Called yet again for my acid reflux meds... still nothing. I sent Denise after some over the counter ones. She was afraid they would kick me out but hey, making me worse off isn't helping. She thought the same thing when I stopped the radiation, now they are glad I did.
The nurses last night... on th spot. So much differnt than today's, save one.
Thursday, December 17, 2009
Dec 17th follow-up
Well, by the time we get here my temperature was 103.5 DF. They admitted me and that is where I write from now... the Penthouse, lol. Last Room on the very top (12th story)..It would appear that I will be out at the earliest, Saturday or Sunday... but that at change as I am still running on and off temperature.
My white cells .09 and should be 4.8-10.6... not too good. They have brought and left this sutff to clean and care for my neck radiation burns, which are severe.
I doubt that I will be checking email tonight and am tired. I mouth breathe when I sleep and that wakes me with pain and bleeding. I considered taking Morphine on top of the patch but I really the pain to awaken me.
The staff here at UT are nothing short of excellent. The food ain't 1/2 bad either, lol. Dr Panella is also checking my urine and blood work and has has ordered more X-Rays of my chest. They have added Oxygen because my O2 stats are down.
I tricked Denise into eating.. I told her I was hungry (they are wanting me to gain weight) and so downstairs she went. I kinda stumbled around on what I might eat, but for her to use her own opinion. She came back with stuff she liked and I should be able to eat. Told her I couldn't and hate to see it wasted... so she ate it. She needed that.
A lady down the hallway just coded tonight. They were working on her when Denise came back in. The guy who came to get me for the chest X-Ray brought a stretcher, which I thought weird at first. I think this floor is the one where very, very sick people come. Advanced cancer, compromised immunity-- stuff like that. That explains the stretcher. I guess me being able to walk, but he wouldn't let me, rules.
My white cells .09 and should be 4.8-10.6... not too good. They have brought and left this sutff to clean and care for my neck radiation burns, which are severe.
I doubt that I will be checking email tonight and am tired. I mouth breathe when I sleep and that wakes me with pain and bleeding. I considered taking Morphine on top of the patch but I really the pain to awaken me.
The staff here at UT are nothing short of excellent. The food ain't 1/2 bad either, lol. Dr Panella is also checking my urine and blood work and has has ordered more X-Rays of my chest. They have added Oxygen because my O2 stats are down.
I tricked Denise into eating.. I told her I was hungry (they are wanting me to gain weight) and so downstairs she went. I kinda stumbled around on what I might eat, but for her to use her own opinion. She came back with stuff she liked and I should be able to eat. Told her I couldn't and hate to see it wasted... so she ate it. She needed that.
A lady down the hallway just coded tonight. They were working on her when Denise came back in. The guy who came to get me for the chest X-Ray brought a stretcher, which I thought weird at first. I think this floor is the one where very, very sick people come. Advanced cancer, compromised immunity-- stuff like that. That explains the stretcher. I guess me being able to walk, but he wouldn't let me, rules.
December 17th 5:00 am
I awoke to the usual pain, maybe decreased a bit and more just a soreness than pain. Automatically I (usual) pulled up through my sinus and throat a mouthful of what felt like phlegm, so I spit into an empty water bottle designated just for that. This time though instead of the regular color it was mostly blood. I ended up spitting up about 3 more mouthfuls of blood and phlegm, then it went back clear. It was a pinkish color. Now it is a mixture. The patch for pain should be kicked in by now but I've never used one before so I no way of knowing how much pain is being blocked. I am a little dizzy and my voice is gone. It's now 5:17, I woke up maybe about 25 minutes ago. STRANGE.
5:22- checking for temperature now. It is 101 but I drank som3e cold water so I have to retake.
5:40 - retake It is now 5:44. Right at 102 D F.
Dr Panella called back and we have to be to the lab this morning and check for cultures growing. He said I may have to be admitted. I am either hungry or sick at my stomach, not sure which, plus I'm freezing. It's now 6:43 am.
5:22- checking for temperature now. It is 101 but I drank som3e cold water so I have to retake.
5:40 - retake It is now 5:44. Right at 102 D F.
Dr Panella called back and we have to be to the lab this morning and check for cultures growing. He said I may have to be admitted. I am either hungry or sick at my stomach, not sure which, plus I'm freezing. It's now 6:43 am.
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