All is well. Roger had a great night, great morning. They JUST removed the ventilator!!!!! He is wearing an oxygen mask right now. As soon as they pulled the tube, Roger had a big smile on this face. Even while wearing the mask he had a big smile. Its just awesome.
They'll continue to monitor him closely for the next 24 hours to make sure his lungs are doing well.
Thats all for now. I knew you'd want to know. Its a beautiful morning!
Sunday, December 27, 2009
Saturday, December 26, 2009
Hmmmmm
The day's nursing staff was an abomination. I'm glad that Denise and I were here. There were three nurses attending to our end of the wing. One female, our nurse, and two males....and all of them SUCKED. you felt your blood pressure rise continually as they sat around and did nothing or surfed the Internet meanwhile monitor alarms sounded in other patients' rooms. We had one go off in our room which took over 45 minutes for the nurse to manage to come in and reset the monitor despite our repeated requests. Fortunately, the alarm was not an emergency - it was because a device on Roger's finger which reads blood oxygen was not working. Absolutely ridiculous. I've been keeping my notes and will be going back to the nursing administrator with the goods, the bads, and the uglies. Not going to do it now as we still have time on this floor with these nurses. I can't imagine being a nurse and not taking your job seriously.... these are people's lives.
Happily, the night nurse, also named Angie, is wonderful. Its amazing to see the difference of a really good nurse verses a really bad nurse. She completely assessed him when she started the shift, layed out all of his meds in anticipation of the nightly doses to be administered, and finally albeit a small detail, she helped position him in bed so that he was COMFORTABLE. Sadly this is NOT something every nurse does. Some flop him around like a piece of luggage and then don't take the time to position pillows, sheets, etc. It makes a huge difference with patient comfort.
During the day shift, there was one good person....also named Angie. She was the respiratory therapist. She really worked with Roger and his ventilator settings. I give her complete credit for how well he has done this afternoon and evening and hopefully tomorrow. The other positive for the day is that Roger sat up again AND even stood up next to the bed. He was completely exhausted afterward, but it was a monumental moment for a patient on a ventilator!!! Roger continues to be amazing.
Roger is doing well tonight. He has had very few coughing fits. Fortunately, with the few he's had, he's been able to regain control without as much physical trauma to his system. You see, when he starts coughing there is a chain of events that happens. First it shakes his rib cage (remember his ribs were spread for the original surgery), then it rattles this lungs and surrounding area which is trying to heal from the stomach bile leak, then the coughing takes his breath away, and finally it all adds up to complete exhaustion. If the coughing is bad enough it may cause fluids to shake loose in his lungs - which has to be suctioned out via the ventilator tube. Likewise fluids have to be suctioned out of his mouth sometimes. Unfortunately, it can feel like you're drowning and throw you into a panic if you can't gain control and settle. Roger has been amazing at doing this. Since Angie figured out the right settings, he has been able to sleep pretty soundly.
I've told you that we measure success now in tiny steps. Now at the close of the day, I can reflect back and conclude we've had a successful, good day....controlled, slow deep breathing and deep sound sleep. Makes me smile to think of it. Cross your fingers for tomorrow. Maybe, just maybe Roger's system/lungs will be strong enough to come off the ventilator.
The shareable (not TOO embarrassing for Roger) Roger Moments have virtually stopped since he has been on the propafol. (though there have been some doosies that I can't share here until I have his permission). Having said that, I will tell you that he is a model patient even on this heavy-duty-knock-your-butt-out drug. He is sweet to all the nurses, he raises an eyebrow with a look of skepticism, he'll shrug his shoulders with this "hmmph, don't worry about it expression" on his face. Really, he is altogether too sweet. I think I've seen him a little frustrated once or twice - but that's it. I stop and try to think about what I would be like on the same drugs with the same pain....I'm afraid I would be the polar opposite of Roger with my head spinning on my shoulders ala Linda Blair/Exorcist. Not a pretty image.
I'm hoping tomorrow continues to be a good day for Roger.
All our love. ~ajw
Happily, the night nurse, also named Angie, is wonderful. Its amazing to see the difference of a really good nurse verses a really bad nurse. She completely assessed him when she started the shift, layed out all of his meds in anticipation of the nightly doses to be administered, and finally albeit a small detail, she helped position him in bed so that he was COMFORTABLE. Sadly this is NOT something every nurse does. Some flop him around like a piece of luggage and then don't take the time to position pillows, sheets, etc. It makes a huge difference with patient comfort.
During the day shift, there was one good person....also named Angie. She was the respiratory therapist. She really worked with Roger and his ventilator settings. I give her complete credit for how well he has done this afternoon and evening and hopefully tomorrow. The other positive for the day is that Roger sat up again AND even stood up next to the bed. He was completely exhausted afterward, but it was a monumental moment for a patient on a ventilator!!! Roger continues to be amazing.
Roger is doing well tonight. He has had very few coughing fits. Fortunately, with the few he's had, he's been able to regain control without as much physical trauma to his system. You see, when he starts coughing there is a chain of events that happens. First it shakes his rib cage (remember his ribs were spread for the original surgery), then it rattles this lungs and surrounding area which is trying to heal from the stomach bile leak, then the coughing takes his breath away, and finally it all adds up to complete exhaustion. If the coughing is bad enough it may cause fluids to shake loose in his lungs - which has to be suctioned out via the ventilator tube. Likewise fluids have to be suctioned out of his mouth sometimes. Unfortunately, it can feel like you're drowning and throw you into a panic if you can't gain control and settle. Roger has been amazing at doing this. Since Angie figured out the right settings, he has been able to sleep pretty soundly.
I've told you that we measure success now in tiny steps. Now at the close of the day, I can reflect back and conclude we've had a successful, good day....controlled, slow deep breathing and deep sound sleep. Makes me smile to think of it. Cross your fingers for tomorrow. Maybe, just maybe Roger's system/lungs will be strong enough to come off the ventilator.
The shareable (not TOO embarrassing for Roger) Roger Moments have virtually stopped since he has been on the propafol. (though there have been some doosies that I can't share here until I have his permission). Having said that, I will tell you that he is a model patient even on this heavy-duty-knock-your-butt-out drug. He is sweet to all the nurses, he raises an eyebrow with a look of skepticism, he'll shrug his shoulders with this "hmmph, don't worry about it expression" on his face. Really, he is altogether too sweet. I think I've seen him a little frustrated once or twice - but that's it. I stop and try to think about what I would be like on the same drugs with the same pain....I'm afraid I would be the polar opposite of Roger with my head spinning on my shoulders ala Linda Blair/Exorcist. Not a pretty image.
I'm hoping tomorrow continues to be a good day for Roger.
All our love. ~ajw
Roger did well yesterday afternoon. He sat up again. His breathing was solid. He was making some progress. The evening was a little more challenging - though less so than the night before. He had to complete three "tests" for the ventilator to be removed. He did two of the test beautifully during the day, the third test did not go as well. As a result, Roger has not been removed from the vent. My heart started to sink a little last night when I saw that the breathing wasn't going as well as it needed to. I pretty much knew the vent wouldn't be coming out.
So here we are today. The pulmonary doctor came in this morning and adjusted the ventilator settings. The machine is taking less breaths for Roger but is still providing him three big solid breaths to stretch out his lungs. The balance of the breaths are Roger's with a little umph from the machine to get it moving. The challenge today is that he has continued, increased mucus in his mouth, throat, and coughing up from the lungs. As a result he is having to spend a lot of time coughing (which racks his body) and then suctioning stuff out of his mouth. Its pretty exhausting for him.
The balance of the day will be spent with him resting, breathing treatments, "dangling" his legs over the edge of the bed, and more resting. Pretty low key.
I've got a couple movies I'm watching. Will finish a book, and then will start another book.
Thanks for all the good thoughts and prayers for Roger.
So here we are today. The pulmonary doctor came in this morning and adjusted the ventilator settings. The machine is taking less breaths for Roger but is still providing him three big solid breaths to stretch out his lungs. The balance of the breaths are Roger's with a little umph from the machine to get it moving. The challenge today is that he has continued, increased mucus in his mouth, throat, and coughing up from the lungs. As a result he is having to spend a lot of time coughing (which racks his body) and then suctioning stuff out of his mouth. Its pretty exhausting for him.
The balance of the day will be spent with him resting, breathing treatments, "dangling" his legs over the edge of the bed, and more resting. Pretty low key.
I've got a couple movies I'm watching. Will finish a book, and then will start another book.
Thanks for all the good thoughts and prayers for Roger.
Friday, December 25, 2009
Happy Friday
And, Merry Christmas. Remember, we're viewing this as any other day in the week....holiday smoliday. And I mean that sincerely. NO BIG DEAL. So NONE of you need to feel bad or sorry or worry that we happen to be here on December 25. It would be the same if it were February 25 or July 25. Just another day. The focus is no different today than it would be any day....get Roger better. So, no worries no sadness from ANY OF YOU!!!! I'm not sad, not weepy, not in the least bit discouraged. Roger is here and is improving - though slowly - on a daily basis. Positive focus - onward and upward!
We made it through the night though it was a little "tedious" for lack of a better word. Our nurse, Arika, was good at trying to work with me/Roger in adjusting his propafal down but then back up as necessary to get him through the night. There were several incidents/episodes were Roger's mouth/throat area became clogged with thick mucus. As a result it would send him into spasms and cause momentary "attacks". Either the nurse (if she was in the room) or I would suction out his mouth. If the fluid was deeper in this trachea or bronchial tubes then either the nurse or the respiratory therapist would have to clear the passage way with a small tube that suctions out the ventilation tube. I did stay nestled in the corner of the room with a pile of blankets on me (they keep these rooms FREEZING) and a couple pillows all packed together between two chairs... I had myself a fine little nest to snooze on and off until the next episode.
Happily Roger has settled more this morning. The pulmonary doctor has changed the setting on Roger's ventilator so that now Roger is doing all the work. This proves to the doctor and nurses and Roger will be ready to come off the vent. The day for coming off the vent has moved again much to my dismay. The doctor said that if all goes well today then he should come off tomorrow. Roger will most likely have a fair amount of pain in his throat and mouth from where the ventilator was - but its something we can address with pain killer. As of the time of starting this post, 10:00 am , he is resting comfortably. He has woken momentarily, blinked his eyes, and then faded back off. Propafol is at its lowest setting. For the moment, all is good.
More later - just wanted to give you a quick update. Eat and DRINK for us. We've got a fair amount of catching up to do in 2010!
We made it through the night though it was a little "tedious" for lack of a better word. Our nurse, Arika, was good at trying to work with me/Roger in adjusting his propafal down but then back up as necessary to get him through the night. There were several incidents/episodes were Roger's mouth/throat area became clogged with thick mucus. As a result it would send him into spasms and cause momentary "attacks". Either the nurse (if she was in the room) or I would suction out his mouth. If the fluid was deeper in this trachea or bronchial tubes then either the nurse or the respiratory therapist would have to clear the passage way with a small tube that suctions out the ventilation tube. I did stay nestled in the corner of the room with a pile of blankets on me (they keep these rooms FREEZING) and a couple pillows all packed together between two chairs... I had myself a fine little nest to snooze on and off until the next episode.
Happily Roger has settled more this morning. The pulmonary doctor has changed the setting on Roger's ventilator so that now Roger is doing all the work. This proves to the doctor and nurses and Roger will be ready to come off the vent. The day for coming off the vent has moved again much to my dismay. The doctor said that if all goes well today then he should come off tomorrow. Roger will most likely have a fair amount of pain in his throat and mouth from where the ventilator was - but its something we can address with pain killer. As of the time of starting this post, 10:00 am , he is resting comfortably. He has woken momentarily, blinked his eyes, and then faded back off. Propafol is at its lowest setting. For the moment, all is good.
More later - just wanted to give you a quick update. Eat and DRINK for us. We've got a fair amount of catching up to do in 2010!
Thursday, December 24, 2009
More Yo-Yoing
It was a day of ups and downs today. I had come in with high expectations that Roger's fever would be low, that he'd be coming off propafol which would get him off the ventilator...and a handful of other lofty expectations.
Roger's fever climbed back up to 102 at one point. Our health care team managed to get it down to the 99's where it stayed most of the day though randomly it would climb and fall. Its not unusual for a patient in Roger's condition to run a fever but a little scary for us care givers as you sit and wonder if the fever might be tied to an infection.
Unfortunately last night, the night nurse was not able to ween Roger off the propafol with the current settings of pain killer and haldol (the less intensive option to propafol). He would seize up with coughing spasms that would jack his vitals. So, they left the propafol at a higher dose for the balance of the evening which meant when the pulmonary doctor showed up this morning, Roger was not in any position near ready to be taken off the ventilator.
Fortunately, our day improved with the change of shift and our day shift nurse, Holly on staff. She is amazing. She proactively went to the doctors and told them she thought Roger's pain meds should be increased to take away the pain & discomfort of coming out of the propafol. The doctors agreed. So, the painkiller dilatin (spelling?) was increased and closely monitored for necessary "turbo" boosts. The result? An early Christmas gift for me. He was able to endure nearly 5 hours of significantly reduced....almost no....propafol which puts him closer to being pulled from the vent. He did have a few coughing/choking spasms but was able to rest comfortably. When he woke, he was able to open his eyes and try to communicate with us (charades again, and messages he tried to write out). You could see him trying to focus.
Also, Holly was able to "dangle" Roger which means that the got him to sit up and dangle his feet over the edge of the bed. this was HUGE for him to do. His vitals and breathing stayed steady. He even supported himself... the nurses did not need to hold him upright as he sat there (most patients they would have to assist). He did that once in the morning and again in the late afternoon/early evening. Even Holly was pleased. Holly was the one who proactively got permission from the doctor for Roger to do this. She knew that by doing this, it helps him get his strength and also becomes a good way for the nurse/doctors to gauge how Roger is doing as they ween him off the sedation.
If you can't tell, I'm a huge fan of Holly's. We've now had her three different times and each and every time she has been amazing. She doesn't show up to work for her paycheck....she shows up for the care giving (and, ok then paycheck too). She has been instrumental in working with the doctors to find the best formula for getting him through all this stuff. If I could clone Holly and have her on all our day and night shifts - everything would be perfect!
Roger has been having a series of coughing fits this evening. I started to write this post over an hour ago and am still trying to finish. Anyway, the goal for tomorrow is to try to get Roger off the vent if all is well. I have a feeling if we can't get his coughing/choking under control, then we may have to dial up the propafol and postpone removing him from the vent.
So, I guess I'll stop here. Its 11:30. Santa should surely be on his way. All I want is Roger - healthy, out of pain, off the ventilator and back to his old silly self. If you see the big jolly guy in the red suit, please send along my request. I don't need any baubles or sparkling things....just my hubby.
I had plans of attaching a picture of our fabulous Christmas tree that we have at home...but forgot to take a picture. I'll try to do that tomorrow. I think that I'm staying the night tonight in Roger's room nestled in a chair in the corner. We'll celebrate the holidays in a big way next year. This year, December 25 is just another day which is fine by me.
Love and peace to you all on this Christmas Eve. Merry Christmas ~ A
Roger's fever climbed back up to 102 at one point. Our health care team managed to get it down to the 99's where it stayed most of the day though randomly it would climb and fall. Its not unusual for a patient in Roger's condition to run a fever but a little scary for us care givers as you sit and wonder if the fever might be tied to an infection.
Unfortunately last night, the night nurse was not able to ween Roger off the propafol with the current settings of pain killer and haldol (the less intensive option to propafol). He would seize up with coughing spasms that would jack his vitals. So, they left the propafol at a higher dose for the balance of the evening which meant when the pulmonary doctor showed up this morning, Roger was not in any position near ready to be taken off the ventilator.
Fortunately, our day improved with the change of shift and our day shift nurse, Holly on staff. She is amazing. She proactively went to the doctors and told them she thought Roger's pain meds should be increased to take away the pain & discomfort of coming out of the propafol. The doctors agreed. So, the painkiller dilatin (spelling?) was increased and closely monitored for necessary "turbo" boosts. The result? An early Christmas gift for me. He was able to endure nearly 5 hours of significantly reduced....almost no....propafol which puts him closer to being pulled from the vent. He did have a few coughing/choking spasms but was able to rest comfortably. When he woke, he was able to open his eyes and try to communicate with us (charades again, and messages he tried to write out). You could see him trying to focus.
Also, Holly was able to "dangle" Roger which means that the got him to sit up and dangle his feet over the edge of the bed. this was HUGE for him to do. His vitals and breathing stayed steady. He even supported himself... the nurses did not need to hold him upright as he sat there (most patients they would have to assist). He did that once in the morning and again in the late afternoon/early evening. Even Holly was pleased. Holly was the one who proactively got permission from the doctor for Roger to do this. She knew that by doing this, it helps him get his strength and also becomes a good way for the nurse/doctors to gauge how Roger is doing as they ween him off the sedation.
If you can't tell, I'm a huge fan of Holly's. We've now had her three different times and each and every time she has been amazing. She doesn't show up to work for her paycheck....she shows up for the care giving (and, ok then paycheck too). She has been instrumental in working with the doctors to find the best formula for getting him through all this stuff. If I could clone Holly and have her on all our day and night shifts - everything would be perfect!
Roger has been having a series of coughing fits this evening. I started to write this post over an hour ago and am still trying to finish. Anyway, the goal for tomorrow is to try to get Roger off the vent if all is well. I have a feeling if we can't get his coughing/choking under control, then we may have to dial up the propafol and postpone removing him from the vent.
So, I guess I'll stop here. Its 11:30. Santa should surely be on his way. All I want is Roger - healthy, out of pain, off the ventilator and back to his old silly self. If you see the big jolly guy in the red suit, please send along my request. I don't need any baubles or sparkling things....just my hubby.
I had plans of attaching a picture of our fabulous Christmas tree that we have at home...but forgot to take a picture. I'll try to do that tomorrow. I think that I'm staying the night tonight in Roger's room nestled in a chair in the corner. We'll celebrate the holidays in a big way next year. This year, December 25 is just another day which is fine by me.
Love and peace to you all on this Christmas Eve. Merry Christmas ~ A
Wednesday, December 23, 2009
Tiny steps forward
As in several posts before, I'm sitting next to Roger's bedside. Lights are dimmed. My brain seems to slow almost in step with the ventilator's rhythm'ed breathing for Roger. One breath in one breath out. One thought in one thought out.
Roger has made progress....small, little baby steps of progress. His vitals look good, the drainage out of his chest is becoming more and more clear and is also less in volume. His fever for the majority of the day stayed in the 99-99.9 range. He was responsive when the doctors came in to talk to him and nurses asked him to turn his head or squeeze their hands. All good things. The chest xray from yesterday looked better than the day before. OK - so this is progress, moving forward. What I am reminded of quickly is what the infectious disease doctor told me the first day I met him ~ this is a long process where Roger's progress will yo-yo up and down as the over all progress moves up. By that he means, there will be bad days mixed in with the progress upward.
The day started to turn a little downward around 4:00pm as Roger's fever has started to climb again. He was up to 101.9 when I walked back in this evening at 8. All you can say is CRAP!!! CRAP!!! CRAP!!!! So they have given him Tylenol to help bring down the fever along with cold compresses to the head. I just did the non-scientific "hand to his forehead" test for temperature and it feels like he's cooler....so maybe the fever has come back down. I'll speak with the infectious disease doctor tomorrow morning to try to identify what keeps giving him a fever. I'm hoping they have a culture back from the bile sample they took. It should help the doctors identify what may be causing the fever spikes. Now you can see why the doctor described this process as yo-yoing up and down while gradually making progress. Personally, I could do WITHOUT the downward part of the yo-yo as I'm sure you can as well.
Because Roger has been improving overall, the ICU/Pulmonary doctor said that he wanted to start weening Roger off the Propafol and on to another drug (the name escapes me at the moment). The new drug would make Roger less sedate and will put him closer to having the ventilator removed. The doctor seemed to think we should be able to remove the ventilator tomorrow sometime. It kinda makes me nervous thinking about it which you probably think is odd. You see, on the ventilator with propafol+pain killer, I know that Roger has minimal distress, minimal pain - he can rest. I'm concerned about the pain and discomfort that he may feel once removed from the vent and the propafol (pain killers will stay on board). Plus, if he's not ready to be off the vent - still needs that assistance - then putting it back in again just increases the potential for something to go wrong....NO MORE THINGS GOING WRONG!!!!
Roger has made progress....small, little baby steps of progress. His vitals look good, the drainage out of his chest is becoming more and more clear and is also less in volume. His fever for the majority of the day stayed in the 99-99.9 range. He was responsive when the doctors came in to talk to him and nurses asked him to turn his head or squeeze their hands. All good things. The chest xray from yesterday looked better than the day before. OK - so this is progress, moving forward. What I am reminded of quickly is what the infectious disease doctor told me the first day I met him ~ this is a long process where Roger's progress will yo-yo up and down as the over all progress moves up. By that he means, there will be bad days mixed in with the progress upward.
The day started to turn a little downward around 4:00pm as Roger's fever has started to climb again. He was up to 101.9 when I walked back in this evening at 8. All you can say is CRAP!!! CRAP!!! CRAP!!!! So they have given him Tylenol to help bring down the fever along with cold compresses to the head. I just did the non-scientific "hand to his forehead" test for temperature and it feels like he's cooler....so maybe the fever has come back down. I'll speak with the infectious disease doctor tomorrow morning to try to identify what keeps giving him a fever. I'm hoping they have a culture back from the bile sample they took. It should help the doctors identify what may be causing the fever spikes. Now you can see why the doctor described this process as yo-yoing up and down while gradually making progress. Personally, I could do WITHOUT the downward part of the yo-yo as I'm sure you can as well.
Because Roger has been improving overall, the ICU/Pulmonary doctor said that he wanted to start weening Roger off the Propafol and on to another drug (the name escapes me at the moment). The new drug would make Roger less sedate and will put him closer to having the ventilator removed. The doctor seemed to think we should be able to remove the ventilator tomorrow sometime. It kinda makes me nervous thinking about it which you probably think is odd. You see, on the ventilator with propafol+pain killer, I know that Roger has minimal distress, minimal pain - he can rest. I'm concerned about the pain and discomfort that he may feel once removed from the vent and the propafol (pain killers will stay on board). Plus, if he's not ready to be off the vent - still needs that assistance - then putting it back in again just increases the potential for something to go wrong....NO MORE THINGS GOING WRONG!!!!
Roger's ventilator has been dialed back as well as the propafol. Dialing back the ventilator encourages Roger's lungs to do more of the work. He has been taking 3-9 breaths on his own a minute over and above the 6 machine-pushed-breaths. That means his lungs are working - that's a good thing. You'll probably get tired of me saying "that's a good thing" but I do it as a reminder for me too. :-) The pulmonary doctor will not let Roger off the vent until he his confident that Roger's lungs are strong enough.
There weren't any real Roger moments today. He was out of it for the majority of the day.
We've decided that we're not going to tell Roger that its Christmas when he comes out of the fog unless he asks. There's no point in making him feel bad about being in the hospital over the holiday - and I mean that more from the perspective that he would feel bad for me and for his family. So, much like the story book character, Rip Van Winkle, Roger may "lose" a little time until we get him out of ICU. Once out of ICU and on the regular surgical recovery floor, then we'll fill him in on all that he missed while snoozing.
So as has happened at this time for the past few evenings, I am battling with myself. The desire to stay here with Roger is overwhelming. I want to make sure that nothing happens...that I can chase down a nurse if I need immediate assistance for him, that I can jump up and help him find his pain button to push if he needs it, that I can be here to change the cool wash cloth on this head. The room isn't set up for me to stay. There are two straight back chairs and that's it. So, I will have to put my faith in the night nurses to be attentive. My aunt Charlotte said she had read recently about people hiring a private nurse to come into the hospital and sit with a patient in recovery... Its a mighty tempting thought. We should be fine tonight with the night nurse ~ there are only three patients (including Roger) on the floor and they all seem relatively quiet. Our nurse has two patients and the other nurse has one. I believe she will be here for him....I'll call in during the middle of the night....just to make sure.
~ ATuesday, December 22, 2009
so, once again I'm a little at a loss for words. There's a whole lot in my head and even more in my heart. I'm sitting here at Roger's bedside. The machines are whirring away. The ventilator is filling his lungs with air, the IV pumps are filling his veins full of propafol for sedation, "fluids" for hydration, anti-biotics to help beat the infection, liquid "food" for hydration, and painkiller...to kill pain. This is exactly what Roger would have wanted a picture of...and will be exactly what he's going to have to miss. Its a bit overwhelming.
Roger made small progress today: much of the fluid in his chest has drained, his fever has dropped to the 99 range, his ventilator was dialed back closer to a weening-mode and yet, as I sit here I can vividly remember how great he was doing last week (wow, "last week" feels like a life time ago). Its a tough comparison. This is a day-by-day process for Roger. Progress is measured in very small, very slow steps. All of the doctors have told me, that this will be a very slow process but we'll get him through it. So patience my friends, we're in for a very long run. I think we finished the first marathon and have somehow landed at the start of a new marathon.
So, I have for you a little Roger moment. The doctors tried to dial Roger's propafol back a little today which meant he was more conscious than he has been since he came out of surgery on Sunday. He still dozed on and off but when he was "awake" he had a good deal of movement and tried to communicate as best he could. We found that we were playing charades to some degree as I tried to guess which body part Roger was referring to or what he wanted to do move, adjust, etc. The nurse untied the restraints that hold his hands down from the ventilator tubes so that we could stretch them and move them around a little. He knew not to touch the tube but kept touching around it as if to tease us....he'd move close to the tube, then gracefully move his finger up to his eye and itch it, or his nose or his chin...never once touching the tube. He even motioned to the tube at one point and waived his hands back and forth like a referee would to indicate "no". So, the Roger moment: the nurse was getting ready to leave the room and Denise and I were trying to encourage Roger to take a nap, I subtly suggested to the nurse that she might want to "snug" Roger down (tie his hands again) - he shot me this "Roger-look" with the unspoken words of "SHUT UP" attached. I explained it was to prevent an accident while he was sleeping that was all. He tried to pull some extra slack in the ties as the nurse was securing him. She caught it and took the slack out. He then tapped her on the arm to get her attention and then pointed at ME and then motioned with his hands as though he were trying to tie something. Denise very quickly translated: "do you want the nurse to tie Angie up instead?" to which my not-so-darling husband responded yes with a shake of his head and his eyes moving up and down. Only Roger.
Roger has quickly become a favorite among the nurses (go figure) - as a result, I think that we have a great group of nurses lined up for most of the balance of the week, with a few unknowns here and there. At least three have already told me that they are going to claim Roger when they come back for their shifts through the balance of the week. It certainly helps ease my mind. I've made a special point to come over in the evenings to meet and talk with the night nurse to make sure that I'm comfortable that they will be attentive to Roger. Should I feel otherwise any of these evenings, I will simply stay the night at the hospital as I did when we started this journey. There's simply no room for mistakes, or lack of detail.
The doctors are leaning towards taking the ventilator out in the next couple days or so. The ICU doctor wants to leave it in longer than the surgeon...so I'll find out what direction we are going tomorrow most likely. I anticipate that they will take another chest xray tomorrow to see how the fluids look in his chest. The nurse told me that today's xray looked better than yesterdays...those baby steps of progress.
I spoke with a girl friend today and she asked "How are you handling this? How are you holding up?". The simple answer is fine. No lie. Fine. Fine really is the only option. It is not an option to crumble and fall to pieces, it is not an option to freak out. Its simply not. My job is to take care of Roger and get him well - that means my option is to get us both through this. No amount of freaking out or crumbling is going to help Roger nor will it help me. This is survival mode - you stay focused on the important things for survival - fighting through the tough stuff. In the question of "flight or fight?" I'm definitely (and always have been) a FIGHT kinda person. I told Roger early on when he first started chemo "I need you to fight half as hard as me - you do that and we'll get through this."
The focus is and will continue to be getting Roger healthy...the "what ifs" don't matter. What matters is TODAY here and now...staying positive. Maybe come January or February once Roger is out of the woods and home resting, maybe then there will be a moment of crumbling, but not now. Having said that, I will tell you that there small momentary "leaks" usually when I'm driving alone in my car, or the past two nights when I've come home to bumble around an empty house. The leaks are like a passing Florida afternoon shower - come and gone before you know it. I kinda view the leaks as emotional purging so that you're fortified with new resolve to keep going.
Everyone of us has the stuff inside us to get through the horrible, most toughest of times. And when you think you don't, you'll find something that gives you that moment of peace and strength to steel up the necessary courage and forge your way through. I don't pretend to know how or why...just that it happens.
More tomorrow. I'm going to do some exercises with Roger's arms and legs and then tuck him in for the night. I have a good feeling about the night nurse, so I'll be sleeping at home tonight.
have a good evening. angie
Roger made small progress today: much of the fluid in his chest has drained, his fever has dropped to the 99 range, his ventilator was dialed back closer to a weening-mode and yet, as I sit here I can vividly remember how great he was doing last week (wow, "last week" feels like a life time ago). Its a tough comparison. This is a day-by-day process for Roger. Progress is measured in very small, very slow steps. All of the doctors have told me, that this will be a very slow process but we'll get him through it. So patience my friends, we're in for a very long run. I think we finished the first marathon and have somehow landed at the start of a new marathon.
So, I have for you a little Roger moment. The doctors tried to dial Roger's propafol back a little today which meant he was more conscious than he has been since he came out of surgery on Sunday. He still dozed on and off but when he was "awake" he had a good deal of movement and tried to communicate as best he could. We found that we were playing charades to some degree as I tried to guess which body part Roger was referring to or what he wanted to do move, adjust, etc. The nurse untied the restraints that hold his hands down from the ventilator tubes so that we could stretch them and move them around a little. He knew not to touch the tube but kept touching around it as if to tease us....he'd move close to the tube, then gracefully move his finger up to his eye and itch it, or his nose or his chin...never once touching the tube. He even motioned to the tube at one point and waived his hands back and forth like a referee would to indicate "no". So, the Roger moment: the nurse was getting ready to leave the room and Denise and I were trying to encourage Roger to take a nap, I subtly suggested to the nurse that she might want to "snug" Roger down (tie his hands again) - he shot me this "Roger-look" with the unspoken words of "SHUT UP" attached. I explained it was to prevent an accident while he was sleeping that was all. He tried to pull some extra slack in the ties as the nurse was securing him. She caught it and took the slack out. He then tapped her on the arm to get her attention and then pointed at ME and then motioned with his hands as though he were trying to tie something. Denise very quickly translated: "do you want the nurse to tie Angie up instead?" to which my not-so-darling husband responded yes with a shake of his head and his eyes moving up and down. Only Roger.
Roger has quickly become a favorite among the nurses (go figure) - as a result, I think that we have a great group of nurses lined up for most of the balance of the week, with a few unknowns here and there. At least three have already told me that they are going to claim Roger when they come back for their shifts through the balance of the week. It certainly helps ease my mind. I've made a special point to come over in the evenings to meet and talk with the night nurse to make sure that I'm comfortable that they will be attentive to Roger. Should I feel otherwise any of these evenings, I will simply stay the night at the hospital as I did when we started this journey. There's simply no room for mistakes, or lack of detail.
The doctors are leaning towards taking the ventilator out in the next couple days or so. The ICU doctor wants to leave it in longer than the surgeon...so I'll find out what direction we are going tomorrow most likely. I anticipate that they will take another chest xray tomorrow to see how the fluids look in his chest. The nurse told me that today's xray looked better than yesterdays...those baby steps of progress.
I spoke with a girl friend today and she asked "How are you handling this? How are you holding up?". The simple answer is fine. No lie. Fine. Fine really is the only option. It is not an option to crumble and fall to pieces, it is not an option to freak out. Its simply not. My job is to take care of Roger and get him well - that means my option is to get us both through this. No amount of freaking out or crumbling is going to help Roger nor will it help me. This is survival mode - you stay focused on the important things for survival - fighting through the tough stuff. In the question of "flight or fight?" I'm definitely (and always have been) a FIGHT kinda person. I told Roger early on when he first started chemo "I need you to fight half as hard as me - you do that and we'll get through this."
The focus is and will continue to be getting Roger healthy...the "what ifs" don't matter. What matters is TODAY here and now...staying positive. Maybe come January or February once Roger is out of the woods and home resting, maybe then there will be a moment of crumbling, but not now. Having said that, I will tell you that there small momentary "leaks" usually when I'm driving alone in my car, or the past two nights when I've come home to bumble around an empty house. The leaks are like a passing Florida afternoon shower - come and gone before you know it. I kinda view the leaks as emotional purging so that you're fortified with new resolve to keep going.
Everyone of us has the stuff inside us to get through the horrible, most toughest of times. And when you think you don't, you'll find something that gives you that moment of peace and strength to steel up the necessary courage and forge your way through. I don't pretend to know how or why...just that it happens.
More tomorrow. I'm going to do some exercises with Roger's arms and legs and then tuck him in for the night. I have a good feeling about the night nurse, so I'll be sleeping at home tonight.
have a good evening. angie
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