4:20pm
WBC 17.4
HCT 27.6
PLT 27,000
Still running fevers
When Austin tries to sleep, he wakes up with mouth pain every 2 or 3 minutes. Austin is feeling "crummy" today. Austin had lesions on his head. He has infected follicles which itch like crazy. His upper back looks a very angry red where he has scratched. He also has a number of lesions on his back.
When changing his dressing, anything that sticks to his skin has torn his skin when it was removed. Now the nurses are putting gauze wrap under anything that needs to be wrapped up (i.e. his PICC line). The PICC line drives everyone crazy because there are so many lines that get tangled up... causing occlusions. Austin has figured that the least occlusions occur when the lines go over his shoulder and down his back and then a shirt over that.
The doctors made an non-scheduled afternoon visit. Without saying they made a mistake, they said that taking him off such a continuous high dose of Fentanyl could be dangerous to Austin. Also, they thought he was needing the "on-demand" dose too frequently. The result? They have changed his medications. His continuous has been added back. They talked about reducing the "on-demand" dosage, but have not done so.
Austin can leave his room and walk the floor, go in the conference room and play a game(you guessed it, he beat me again). We no longer have to wear gowns and gloves, only the mask.
Today, Austin is focused on looking forward to Liz's visit. He is trying to rest a lot. I am watching him trying to sleep right now and notice that his body is twitching a lot.
Showing posts with label Mom's update. Show all posts
Showing posts with label Mom's update. Show all posts
Saturday, November 15, 2008
Thursday, November 13, 2008
[11-13-08] Mom says "Different day, more of the same"
WBC 1.3
HCT 290
PLT 11,000
Temperature: Has been up to 101.6 on Austin's thermometer. Doctors don't seem stressed about the fever. They think it could be white cells fighting an infection.
Today is mostly a repeat of yesterday. Austin's mouth is still very painful. He has two especially bad sores under his tongue. The Fentanyl has been increased (50Mcg to 75Mcg) on as needed basis but Austin tries not to push the clicker so he can stay alert. The increase in Fentanyl HAS affected his concentration. A few hours ago he was standing with a vacant expression on his face, body swaying; I called his name and he jerked to attention. He says he was daydreaming, I think he zoned out! I need to play him a board game tonight so maybe I can win for the first time!! As I read this to Austin he says again "I really was dreaming".
What I find strangest is that Austin will lay down for a nap and wake up thinking it has been 30 minutes later - most of the time it is about 1 minute! He does that all day long. When he wakes up, he feels rested.
The other strange thing is that his body jerks him awake often. His oxygen monitor often goes off for too little oxygen, so that Austin now makes it a habit to put on the oxygen tube before laying down.
We are attempting to watch the movie "BRAZIL". We are often interrupted by nurses, machines going off, bathroom needs etc.
Indicators of Austin's pain level:
1. Austin talks very slow trying not to move his lips or tongue
2. It is worse when Austin starts typing on the computer screen to communicate.
Signs it is worse:
Austin will hold his hand to his mouth, palm in, BUT when the pain really gets bad, he will hold the back of his hand to his mouth and his hand shakes---then he looks for his clicker!
When Austin stops obsessively rinsing with saline water....then even that hurts too much. Austin has mentioned that the saline is not as effective as before. Previously, Austin would rinse with the saline and could talk for a few sentences - now it is maybe a few words if we are lucky.
HCT 290
PLT 11,000
Temperature: Has been up to 101.6 on Austin's thermometer. Doctors don't seem stressed about the fever. They think it could be white cells fighting an infection.
Today is mostly a repeat of yesterday. Austin's mouth is still very painful. He has two especially bad sores under his tongue. The Fentanyl has been increased (50Mcg to 75Mcg) on as needed basis but Austin tries not to push the clicker so he can stay alert. The increase in Fentanyl HAS affected his concentration. A few hours ago he was standing with a vacant expression on his face, body swaying; I called his name and he jerked to attention. He says he was daydreaming, I think he zoned out! I need to play him a board game tonight so maybe I can win for the first time!! As I read this to Austin he says again "I really was dreaming".
What I find strangest is that Austin will lay down for a nap and wake up thinking it has been 30 minutes later - most of the time it is about 1 minute! He does that all day long. When he wakes up, he feels rested.
The other strange thing is that his body jerks him awake often. His oxygen monitor often goes off for too little oxygen, so that Austin now makes it a habit to put on the oxygen tube before laying down.
We are attempting to watch the movie "BRAZIL". We are often interrupted by nurses, machines going off, bathroom needs etc.
Indicators of Austin's pain level:
1. Austin talks very slow trying not to move his lips or tongue
2. It is worse when Austin starts typing on the computer screen to communicate.
Signs it is worse:
Austin will hold his hand to his mouth, palm in, BUT when the pain really gets bad, he will hold the back of his hand to his mouth and his hand shakes---then he looks for his clicker!
When Austin stops obsessively rinsing with saline water....then even that hurts too much. Austin has mentioned that the saline is not as effective as before. Previously, Austin would rinse with the saline and could talk for a few sentences - now it is maybe a few words if we are lucky.
Sunday, November 2, 2008
[11-02-08] 5:45pm Mom's update
Today has been sometimes crazy and sometimes really quiet. When I first arrived, the first thing I see is someone in the room without a mask. I saw red! I asked to speak to the resource nurse (the nurse in charge of the floor). I told her everything that happened yesterday and said that if a procedure is set in place, then it should be the same procedure for everyone. We talked for quite some time. She was in total agreement with me about everyone wearing masks when they enter this room and promised she would talk to all the staff today and tell tomorrow's resource nurse about our conversation...AND have that resource nurse come talk with me. We talked about the fact that I (or any other family members or caregivers) did not need this added stress.
I also explained that my concerns were not only for Austin, but also for the other patients. I was not given any instructions about how to wear my gown or mask, and didn't find out that there were special sinks there to wash my hands every time I come onto the ward. Basically, it is like the 3 minute scrub with a brush but without the brush. You press the pump for the special liquid into one hand and with the nails on the other hand scratch into the palm of the first hand - which works the liquid under the fingernails, then do the same with the other hand. I noticed that many people who come onto the ward don't do that. One man who entered when I entered just put on a mask and gown and never washed his hands in any way in the ward!
She also said that she had planned to move Austin into a private room on Tuesday but she would try to get him one today or tomorrow if possible. Austin's roommate was supposed to be moved out to another floor (he is not a BMT patient but the floor he should be on ran out of beds) and the resource nurse said that she would do everything possible to keep the second bed in the room empty. That all happened around 9:00am. About 30 minutes after the resource nurse left, in comes a maintenance man with a ladder and NO MASK! He said that the nurse at the reception desk told him he didn't need a mask if he was only in the room for 1 minute! I left the room behind the man and lo and behold, there was the resource nurse. I told her what the man said and she was very upset and apologetic.
I was ready to hand make a sign to tape on the door (in addition to the red paper that is already on the door saying that a mask and gown must be worn into the room). The resource nurse said she would make a sign - and she did.
It is now 5:45pm and nothing about Austin's room situation (including his roommate) has changed.
As for Austin - how is he doing? Austin enjoyed seeing me on my rants on his behalf. His stomach is queasy but not hurting or nauseous. He is trying to eat but having a hard time. His mouth is sore. Today the doctor's told him that they were sure he would be on IV nutrition soon, as most patients in his situation are. His blood pressure is fine, no fever, headaches or neck pain.
Liz came for a visit from about 1:30-5:30 (Yeah Liz!!). I took that time to run errands. Austin says he slept a large part of that time due to stomach discomfort.
When the doctor's where here this afternoon I asked them why they only take blood at 8pm (and don't get the results until about 10pm). What happens if Austin becomes neutropenic during the next 24 hours? The doctor said that they try to plan ahead based on his stats and get him into a private room.
Doctors just came in and there was a discussion about Austin's stomach problem. Maalox has not helped. I mentioned that Austin downplays his discomfort. The doctor is going to give him morphine and see if that helps. The idea is that the mucositis in his mouth is throughout his gastric system and the morphine should calm that down. Austin said he is feeling giddy at the thought of relief!
I also explained that my concerns were not only for Austin, but also for the other patients. I was not given any instructions about how to wear my gown or mask, and didn't find out that there were special sinks there to wash my hands every time I come onto the ward. Basically, it is like the 3 minute scrub with a brush but without the brush. You press the pump for the special liquid into one hand and with the nails on the other hand scratch into the palm of the first hand - which works the liquid under the fingernails, then do the same with the other hand. I noticed that many people who come onto the ward don't do that. One man who entered when I entered just put on a mask and gown and never washed his hands in any way in the ward!
She also said that she had planned to move Austin into a private room on Tuesday but she would try to get him one today or tomorrow if possible. Austin's roommate was supposed to be moved out to another floor (he is not a BMT patient but the floor he should be on ran out of beds) and the resource nurse said that she would do everything possible to keep the second bed in the room empty. That all happened around 9:00am. About 30 minutes after the resource nurse left, in comes a maintenance man with a ladder and NO MASK! He said that the nurse at the reception desk told him he didn't need a mask if he was only in the room for 1 minute! I left the room behind the man and lo and behold, there was the resource nurse. I told her what the man said and she was very upset and apologetic.
I was ready to hand make a sign to tape on the door (in addition to the red paper that is already on the door saying that a mask and gown must be worn into the room). The resource nurse said she would make a sign - and she did.
It is now 5:45pm and nothing about Austin's room situation (including his roommate) has changed.
As for Austin - how is he doing? Austin enjoyed seeing me on my rants on his behalf. His stomach is queasy but not hurting or nauseous. He is trying to eat but having a hard time. His mouth is sore. Today the doctor's told him that they were sure he would be on IV nutrition soon, as most patients in his situation are. His blood pressure is fine, no fever, headaches or neck pain.
Liz came for a visit from about 1:30-5:30 (Yeah Liz!!). I took that time to run errands. Austin says he slept a large part of that time due to stomach discomfort.
When the doctor's where here this afternoon I asked them why they only take blood at 8pm (and don't get the results until about 10pm). What happens if Austin becomes neutropenic during the next 24 hours? The doctor said that they try to plan ahead based on his stats and get him into a private room.
Doctors just came in and there was a discussion about Austin's stomach problem. Maalox has not helped. I mentioned that Austin downplays his discomfort. The doctor is going to give him morphine and see if that helps. The idea is that the mucositis in his mouth is throughout his gastric system and the morphine should calm that down. Austin said he is feeling giddy at the thought of relief!
Friday, October 31, 2008
[10-31-08] Mom's Update
12;25pm
i was able to see Austin at 10:00 am. He was extremely tired so I left the room so he could sleep.
I just returned from seeing Austin. He commented that it was a rough night. His temperature went up to 105 again and he started the rigors (extreme shaking). He looks very tired still. Austin also was vomiting this morning.
They will be moving him this afternoon. His blood oxygenation was down to 91 without the oxygen assistance, so they are still keeping him on oxygen support. They are taking it off every so often to check how he is doing without it. After eating some applesauce, Austin asked for some ensure (strawberry). Again Austin is really tired and I told him to go to sleep. I have left the room so that I could update his blog.
There is no internet in his room and there are no cell phones allowed on in the ICU.
I know this is not detailed information, but his nurse just left for lunch and I didn't ask for updates on his BP, but his temperature is close to normal - YEAH!
2:00pm update
I just went in to visit Austin. Let me describe the set-up. You enter a very small room, you must open a special packet that contains a fingernail scraper and brush/sponge with iodine/something mix - just like the doctors use on T.V. You need to scrup with that for 3 minutes, either before or after scrubbing, you put on a gown and mask. Then you can go through the next door into the room.
Well, after I arrived, Austin's nurse (yes, he has his OWN nurse who is just taking care him) poked her head out. Austin was gently snoring again. He had stood up to go to the bathroom and vomited, they gave him Adavan and he was resting so it didn't make sense for me to gown up. His blood pressure is fine, temp is fine and he WILL be moved back onto the cancer ward this afternoon!
3:50pm update
bp 91/55 Heart rate 118 oxygen temperature is 38c = 100.4
I am angry....grrrrr. Austin was moved back into the same room he was in before ICU. A room with another patient whose visitors are not required to even wear a mask! They say that Austin's counts are up high enough that I don't have to wear a gown but still need to wear a mask. I was told previously that under no circumstances should I even lift my mask to take a sip of drink; I would need to exit the room to do so. Now they have Austin sharing a room and the visitors are not wearing masks. One nurse told me that the curtain would take care of blocking the germs!!!
Ok, as I type this the head nurse came in and told me that I was rght and the other visitors would also have to wear masks. I am glad I madea fuss. Time to unpack.
5:10pm bp 81/48 there is concern...temp is still 38c = 100.4
they are pushing fluids through IV
5:30 bp 106/81 whew...everyone cheered
Austin is very tired and weak. Ate a little soup but has to take breaks to rest between bites.
i was able to see Austin at 10:00 am. He was extremely tired so I left the room so he could sleep.
I just returned from seeing Austin. He commented that it was a rough night. His temperature went up to 105 again and he started the rigors (extreme shaking). He looks very tired still. Austin also was vomiting this morning.
They will be moving him this afternoon. His blood oxygenation was down to 91 without the oxygen assistance, so they are still keeping him on oxygen support. They are taking it off every so often to check how he is doing without it. After eating some applesauce, Austin asked for some ensure (strawberry). Again Austin is really tired and I told him to go to sleep. I have left the room so that I could update his blog.
There is no internet in his room and there are no cell phones allowed on in the ICU.
I know this is not detailed information, but his nurse just left for lunch and I didn't ask for updates on his BP, but his temperature is close to normal - YEAH!
2:00pm update
I just went in to visit Austin. Let me describe the set-up. You enter a very small room, you must open a special packet that contains a fingernail scraper and brush/sponge with iodine/something mix - just like the doctors use on T.V. You need to scrup with that for 3 minutes, either before or after scrubbing, you put on a gown and mask. Then you can go through the next door into the room.
Well, after I arrived, Austin's nurse (yes, he has his OWN nurse who is just taking care him) poked her head out. Austin was gently snoring again. He had stood up to go to the bathroom and vomited, they gave him Adavan and he was resting so it didn't make sense for me to gown up. His blood pressure is fine, temp is fine and he WILL be moved back onto the cancer ward this afternoon!
3:50pm update
bp 91/55 Heart rate 118 oxygen temperature is 38c = 100.4
I am angry....grrrrr. Austin was moved back into the same room he was in before ICU. A room with another patient whose visitors are not required to even wear a mask! They say that Austin's counts are up high enough that I don't have to wear a gown but still need to wear a mask. I was told previously that under no circumstances should I even lift my mask to take a sip of drink; I would need to exit the room to do so. Now they have Austin sharing a room and the visitors are not wearing masks. One nurse told me that the curtain would take care of blocking the germs!!!
Ok, as I type this the head nurse came in and told me that I was rght and the other visitors would also have to wear masks. I am glad I madea fuss. Time to unpack.
5:10pm bp 81/48 there is concern...temp is still 38c = 100.4
they are pushing fluids through IV
5:30 bp 106/81 whew...everyone cheered
Austin is very tired and weak. Ate a little soup but has to take breaks to rest between bites.
Thursday, October 30, 2008
[10-30-08] Mom's comments
Austin was feeling sick when I arrived this morning. He tried to drink ensure and it didn't stay down. He has been getting Benyadril and Adavan (sorry if I spell them wrong) to help with the nausea. Around 12:20 they started his chemo. He slept off and on for almost three hours and then started shaking violently. He was freezing. I went and got him two hot blankets, but that didn't help. I asked the nurse to come right away. Soon after it became worse and as I was getting ready to yell for a nurse (my hand was reaching for the handle) - she came in.
The nurse had to check his blood pressure and temperature because they are concerned that his blood pressure has been going too low. Finally two nurses came in with four more hot blankets and IV medications - Demerol and adavin to stop the shakes. One of his doctors just came in and checked up on Austin, then she ordered Compazine (another anti nausea medication) for Austin. He has already had all the Benedryl and Adavan allowable in a certain time frame. Because of all the shaking his temp. is 103.6. To tell the truth, he was shaking so hard (he said he was freezing) I almost climbed into the bed with him and held him!
The medication has worked and the chills and shaking have ceased - Thank God!
On a side note...many of the nurses and aides have admired the chemo quilt that Liz's mom made for Austin. I am happy that I can be one of his support team and although the circumstances are not the best, what an awesome opportunity to spend quality time with my son.
Yesterday Austin told me he was bored and he laughed when I offered to get him his DS or a book. Austin said that it was the first time that I didn't respond with... "Then clean your room" or some other chore. I told him that this is the first time in his life that he has my undivided attention for two months and I am at his beck and call.
I hope Austin will feel better soon so that he can write his perceptions of this event. His chemo today is administered for over a four hour time period and he has about 20 minutes left.
As I finish up now, Austin is asleep again and gently snoring with a few occasional grunts.
Mom - cont. 5:30pm
Austin's temp reached 103.7 and is starting to come down; however, it looks pretty certain that he will be going upstairs to ICU for the night. The possibilities are these: 1. He has some sort of infection/bacteria in his line and they will have to remove it, use veins for IVs for a day or so then put in a PIC line...which is like a port but it enters at the inside bend of the elbow and goes to his chest. They use exray when they place the line. 2. He is just having chemo induced fever or 3. he has some sort of other infection. They did a blood culture last night and again around 3:45 today. It takes 24 hours to get culture results back (they also did one Sunday night).
I will be allowed to stay with him until tonight. It is hard to watch Austin feel so bad. His symptoms are: Fever - which has been pretty continuous since Sunday night but varies in severity, today being the worse. Neck pain - this seems to be a result of the fever but could also be a sign of infection. Headaches - again fever related. Backaches - no comment has been made about that but Austin addressed that in previous posts. Nausea/vomiting, today is really the first time since admittance that there has been actual vomiting (to my knowledge). Fast/heavy breathing, I know that could be caused by pain due to my personal experience. Dry mouth/thirst, no comment. Severe chills/shaking which the nurses call "rigors". Sweating, due to fever. Basically, Austin feels awful.
I asked the nurse and he says that it is obvious that Austin has some sort of infection and that it is pretty certain he will be going to ICU for a day or two. Once they find the source of infection, then can treat it. Meanwhile, they have giving stronger broad spectrum antibiodics, pushing fluids via IV and watching him very closely. In ICU there are more monitoring machines and they can watch him even closer - but the draw back in ICU is the germs that are up there from other patients. I will address that more later when I learn more about it.
to be continued.
6:30pm
BP 113/46 temp 40.6c = +105 degrees adding oxygen to assist breathing
They have taken blood gasses because of Austin's rapid breathing
The move to ICU is almost certain until they can find where the infection is.
The "germ" thing in ICU is during transportation, but Austin will have his HEPA mask on to protect him. He is sleeping - all the meds are sedating him.
6:50 BP 104/40 temp 39.6c (after drinking cold water). Ice packs on neck and head. Oxygen saturation 95 w/assistance - taking off assistance and will recheck in 10 min.
Gave Adavan (which contains some tylanol which also helps with fever). Austin is drinking a lot of water.
6:58pm Oxygen saturation 88 temp 39.0c 102.2 White cell count is down to .4
Back on oxygen support. Austin will be going to ICU. When Austin lays flat his breathing is more labored so it is better for his head and chest to be elevated - but not a huge difference. Central line - tunneled (his port) will be pulled in about 15 minutes. They will put a central line in at ICU, probably in his neck. All labs are consistant with an infection. IV being started at 7:06pm. Austin is now Neutropenic (ok I can't spell). This means he must be in "isolation". I must say I am impresseed. He has had a doctor stay on the ward to monitor him, his nurse stayed past his shift and right now he has 6 nurses and 2 doctors in the room (the ICU team is here).
The nurse had to check his blood pressure and temperature because they are concerned that his blood pressure has been going too low. Finally two nurses came in with four more hot blankets and IV medications - Demerol and adavin to stop the shakes. One of his doctors just came in and checked up on Austin, then she ordered Compazine (another anti nausea medication) for Austin. He has already had all the Benedryl and Adavan allowable in a certain time frame. Because of all the shaking his temp. is 103.6. To tell the truth, he was shaking so hard (he said he was freezing) I almost climbed into the bed with him and held him!
The medication has worked and the chills and shaking have ceased - Thank God!
On a side note...many of the nurses and aides have admired the chemo quilt that Liz's mom made for Austin. I am happy that I can be one of his support team and although the circumstances are not the best, what an awesome opportunity to spend quality time with my son.
Yesterday Austin told me he was bored and he laughed when I offered to get him his DS or a book. Austin said that it was the first time that I didn't respond with... "Then clean your room" or some other chore. I told him that this is the first time in his life that he has my undivided attention for two months and I am at his beck and call.
I hope Austin will feel better soon so that he can write his perceptions of this event. His chemo today is administered for over a four hour time period and he has about 20 minutes left.
As I finish up now, Austin is asleep again and gently snoring with a few occasional grunts.
Mom - cont. 5:30pm
Austin's temp reached 103.7 and is starting to come down; however, it looks pretty certain that he will be going upstairs to ICU for the night. The possibilities are these: 1. He has some sort of infection/bacteria in his line and they will have to remove it, use veins for IVs for a day or so then put in a PIC line...which is like a port but it enters at the inside bend of the elbow and goes to his chest. They use exray when they place the line. 2. He is just having chemo induced fever or 3. he has some sort of other infection. They did a blood culture last night and again around 3:45 today. It takes 24 hours to get culture results back (they also did one Sunday night).
I will be allowed to stay with him until tonight. It is hard to watch Austin feel so bad. His symptoms are: Fever - which has been pretty continuous since Sunday night but varies in severity, today being the worse. Neck pain - this seems to be a result of the fever but could also be a sign of infection. Headaches - again fever related. Backaches - no comment has been made about that but Austin addressed that in previous posts. Nausea/vomiting, today is really the first time since admittance that there has been actual vomiting (to my knowledge). Fast/heavy breathing, I know that could be caused by pain due to my personal experience. Dry mouth/thirst, no comment. Severe chills/shaking which the nurses call "rigors". Sweating, due to fever. Basically, Austin feels awful.
I asked the nurse and he says that it is obvious that Austin has some sort of infection and that it is pretty certain he will be going to ICU for a day or two. Once they find the source of infection, then can treat it. Meanwhile, they have giving stronger broad spectrum antibiodics, pushing fluids via IV and watching him very closely. In ICU there are more monitoring machines and they can watch him even closer - but the draw back in ICU is the germs that are up there from other patients. I will address that more later when I learn more about it.
to be continued.
6:30pm
BP 113/46 temp 40.6c = +105 degrees adding oxygen to assist breathing
They have taken blood gasses because of Austin's rapid breathing
The move to ICU is almost certain until they can find where the infection is.
The "germ" thing in ICU is during transportation, but Austin will have his HEPA mask on to protect him. He is sleeping - all the meds are sedating him.
6:50 BP 104/40 temp 39.6c (after drinking cold water). Ice packs on neck and head. Oxygen saturation 95 w/assistance - taking off assistance and will recheck in 10 min.
Gave Adavan (which contains some tylanol which also helps with fever). Austin is drinking a lot of water.
6:58pm Oxygen saturation 88 temp 39.0c 102.2 White cell count is down to .4
Back on oxygen support. Austin will be going to ICU. When Austin lays flat his breathing is more labored so it is better for his head and chest to be elevated - but not a huge difference. Central line - tunneled (his port) will be pulled in about 15 minutes. They will put a central line in at ICU, probably in his neck. All labs are consistant with an infection. IV being started at 7:06pm. Austin is now Neutropenic (ok I can't spell). This means he must be in "isolation". I must say I am impresseed. He has had a doctor stay on the ward to monitor him, his nurse stayed past his shift and right now he has 6 nurses and 2 doctors in the room (the ICU team is here).
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