Sunday, October 4
The past couple of days have been very difficult and stressful. We have been faced with some difficult challenges and decisions.
Yesterday was not one of our better days. Chuck has some setbacks which caused him much discomfort that required alot of Dialatta. That is always a bad thing all around.
He has not been able to urinate through his bladder since last monday and he's had cronic diareahh so his body is not absorbing some of the medications.
Our objective is to manage his "cronic" pain with extended pain meds and something for his "acute" pain. They realize that the pain in his kidney is "nerve" pain and have him on Lyrica. It's takes a few days to get into his system but meanwhile, it makes him "loopy". Our hope is that the Lyrica will lesson his pain and he will need less naroctics for pain relief. In order to get him prepared for home, they to adjust the pain pump meds so that it would equal his his "Oxy" extended meds so they make a fair evaluation. Kind of a "apples to apples" comparison.
I have made it clear that we still want to take Chuck home. WE will still make our visits to the clinic but we also want to be able make one of those vist in MB instead driving down to Charleston 2x a week. He can get labs and infusion there as easliy as Charleston.
They were a little reluctant at first but understand that after a year of this, we need to go home. And more importantly, this is OUR decision. We can still get home care and in extreme situations we can go to the local hospital who will transport him back to MUSC should the need arise. They have agreed to our wishes and will help set things up. The team is very sympathic to Chuck and have come to care for him.
Our biggest obstacle is that the bladder is still ill and he is so suseptible to infection. Because of his low immune system there will always be a risk of infection. There has only been 2-3 weeks between infection since June when they put the tubes in. The body recognizes the tubes as foreign and that generates the infection. We are hoping that he will tolerate being on Chipro, now. This may help.
Since, the GVHD appears to be better, they continue decrease his steriod and immunesuppressants.These too make his feel very shaky and fatigued bu they tell us it's progress.
Alittle new development, a doctor from 'infectionist disease" came to us and said that a blood culture they took a couple of days ago grew a bacteria that they have not been able to identify the "species". That "freaked" us a bit, I have learned to not respond until I actually hear something from our Doctor.
Wishing yu'all a blessed day!!
Yesterday was not one of our better days. Chuck has some setbacks which caused him much discomfort that required alot of Dialatta. That is always a bad thing all around.
He has not been able to urinate through his bladder since last monday and he's had cronic diareahh so his body is not absorbing some of the medications.
Our objective is to manage his "cronic" pain with extended pain meds and something for his "acute" pain. They realize that the pain in his kidney is "nerve" pain and have him on Lyrica. It's takes a few days to get into his system but meanwhile, it makes him "loopy". Our hope is that the Lyrica will lesson his pain and he will need less naroctics for pain relief. In order to get him prepared for home, they to adjust the pain pump meds so that it would equal his his "Oxy" extended meds so they make a fair evaluation. Kind of a "apples to apples" comparison.
I have made it clear that we still want to take Chuck home. WE will still make our visits to the clinic but we also want to be able make one of those vist in MB instead driving down to Charleston 2x a week. He can get labs and infusion there as easliy as Charleston.
They were a little reluctant at first but understand that after a year of this, we need to go home. And more importantly, this is OUR decision. We can still get home care and in extreme situations we can go to the local hospital who will transport him back to MUSC should the need arise. They have agreed to our wishes and will help set things up. The team is very sympathic to Chuck and have come to care for him.
Our biggest obstacle is that the bladder is still ill and he is so suseptible to infection. Because of his low immune system there will always be a risk of infection. There has only been 2-3 weeks between infection since June when they put the tubes in. The body recognizes the tubes as foreign and that generates the infection. We are hoping that he will tolerate being on Chipro, now. This may help.
Since, the GVHD appears to be better, they continue decrease his steriod and immunesuppressants.These too make his feel very shaky and fatigued bu they tell us it's progress.
Alittle new development, a doctor from 'infectionist disease" came to us and said that a blood culture they took a couple of days ago grew a bacteria that they have not been able to identify the "species". That "freaked" us a bit, I have learned to not respond until I actually hear something from our Doctor.
Wishing yu'all a blessed day!!
Dayna and Chuck,
What to say to you???? I don't know anymore, wishing there was something new and more meaningful to jot down into words to you, but I don't know what they would be, only that we miss you so and again wish we could visit together, but for now again I send you love and strength and only good thoughts.. xoxo
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your article is so informative and interesting. nice shared.
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Excellent article!
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Hello Mr. Expert,
When are going to write up a follow up article on this post... is it going to be anytime soon?
_______
"We run a Lawyer Directory about Bankrupcty" ...
( http://www.QSLaw.com )
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What is CMS??
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Why am I so afraid of depth?
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Why am I so afraid of depth?
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Excellent article!
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Do not quite understand, do you transfer your texts
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