It's been about two weeks since the last update.....two weeks of little progress, more challenges and more setbacks. I haven't written much because I don't like sharing nothing but bad news.
Updates: On the positive side, Vikki is able to do pressure support trials for 4-6 hours daily. This says that the lungs are working pretty well and she can breathe with minimal support from the ventilator....but only for limited periods of time.
But, she is not making a lot of needed progress in her respiratory recovery. She has tried using the trach dome - just oxygen with no mechanical support - a couple of times in the past week or two. She has only been able to handle this for short periods of time. It's good that she can do this, but the short duration of each trial indicates she has a long way to go to get off the respirator.
Medically, she is struggling.
She has a pancreas infection, cause unknown. It is being treated but there is no good treatment for this. They are working on finding the right drugs. Sometimes they have to stop the tube feeding to let the pancreas rest. They believe she has lost of portion of her pancreas. They also believe there is some kind of fluid buildup around the pancreas that may need attention.
They are concerned that she may have some internal bleeding....probably minor, but enough that her hemoglobin has dropped several times to a level required a transfusion. They believe this may be associated with the pancreas infection. Interventional radiology was going to attempt to block off the bleeding area but decided they weren't sure they could find it and didn't want to risk an invasive procedure.
GI is believes that the fluid build up around her pancreas may actually be putting pressure on the area that was bleeding and this may be helping to control the bleeding. They don't want to drain the fluid because they are worried that may lead to more bleeding.
The only plan they can come up with is wait and monitor her for changes. I finally had a good talk with the GI attending. This is a major referral center for pancreas treatment, so she is in the best place possible for treatment. With that said, there is not much they feel they can do other than wait....and hope it gets better and not worse. They have told me that her type of problem could take months (yes, that's not a typo) to resolve itself.
Meanwhile, she is in a lot of abdominal pain. The pain has been limiting her ability to do all of the therapy activities that she should be doing to regain strength.
To add to her troubles, she now has some kind of colon infection. That just showed up this week. They are doing cultures to figure out what type of infection it is and how to treat it. They have stopped one of her anti-rejection drugs that could be causing this new infection. Now, they have to find a replacement for that. This is another wait and monitor issue. They have talked about doing a colonoscopy to take samples for testing, but they are worried that her colon is too inflamed and that they could possibly cause damage with the scope.
She has reverted back into her state of encephalopathy (the delirium) with all of these challenges. We can't tell what's going on...whether she just wants to block everything and everyone out or whether there is a clinical cause for this. Whatever is causing it, she has basically been totally withdrawn for the past three days. She will open her eyes when you speak to her, but she will not respond or acknowledge. She won't smile. She won't squeeze my hand. She won't write notes on her pad. There is no way to get any response of any kind from her. I tried playing Jimmy Buffett tunes yesterday....that didn't work. I am running out of ideas. And of course, this is another challenge for the therapy team as she won't cooperate with them.
So my life has become 10-12 hours of bedside sitting....talking to multiple doctors...trying to understand what's going on....and hoping for some kind of good news for a change. We had a big care conference with the attending docs from 4 different teams that are treating her. I am pretty confident she is getting the best care they can provide.
The thing I can't understand is why this is happening to my lovely, caring and compassionate wife. I can't think of anything she has done in her life to deserve this kind of crap being heaped upon her day after day after day. If there is a god, why is this happening to her...and why isn't he answering the prayers of all of her friends and relatives. What is this world has she done to deserve this and when is she going to get a break. I thought getting the new lungs would be the beginning of a new chapter in our life, but I did not expect that this chapter was going to be such a nightmare.
Updates: On the positive side, Vikki is able to do pressure support trials for 4-6 hours daily. This says that the lungs are working pretty well and she can breathe with minimal support from the ventilator....but only for limited periods of time.
But, she is not making a lot of needed progress in her respiratory recovery. She has tried using the trach dome - just oxygen with no mechanical support - a couple of times in the past week or two. She has only been able to handle this for short periods of time. It's good that she can do this, but the short duration of each trial indicates she has a long way to go to get off the respirator.
Medically, she is struggling.
She has a pancreas infection, cause unknown. It is being treated but there is no good treatment for this. They are working on finding the right drugs. Sometimes they have to stop the tube feeding to let the pancreas rest. They believe she has lost of portion of her pancreas. They also believe there is some kind of fluid buildup around the pancreas that may need attention.
They are concerned that she may have some internal bleeding....probably minor, but enough that her hemoglobin has dropped several times to a level required a transfusion. They believe this may be associated with the pancreas infection. Interventional radiology was going to attempt to block off the bleeding area but decided they weren't sure they could find it and didn't want to risk an invasive procedure.
GI is believes that the fluid build up around her pancreas may actually be putting pressure on the area that was bleeding and this may be helping to control the bleeding. They don't want to drain the fluid because they are worried that may lead to more bleeding.
The only plan they can come up with is wait and monitor her for changes. I finally had a good talk with the GI attending. This is a major referral center for pancreas treatment, so she is in the best place possible for treatment. With that said, there is not much they feel they can do other than wait....and hope it gets better and not worse. They have told me that her type of problem could take months (yes, that's not a typo) to resolve itself.
Meanwhile, she is in a lot of abdominal pain. The pain has been limiting her ability to do all of the therapy activities that she should be doing to regain strength.
To add to her troubles, she now has some kind of colon infection. That just showed up this week. They are doing cultures to figure out what type of infection it is and how to treat it. They have stopped one of her anti-rejection drugs that could be causing this new infection. Now, they have to find a replacement for that. This is another wait and monitor issue. They have talked about doing a colonoscopy to take samples for testing, but they are worried that her colon is too inflamed and that they could possibly cause damage with the scope.
She has reverted back into her state of encephalopathy (the delirium) with all of these challenges. We can't tell what's going on...whether she just wants to block everything and everyone out or whether there is a clinical cause for this. Whatever is causing it, she has basically been totally withdrawn for the past three days. She will open her eyes when you speak to her, but she will not respond or acknowledge. She won't smile. She won't squeeze my hand. She won't write notes on her pad. There is no way to get any response of any kind from her. I tried playing Jimmy Buffett tunes yesterday....that didn't work. I am running out of ideas. And of course, this is another challenge for the therapy team as she won't cooperate with them.
So my life has become 10-12 hours of bedside sitting....talking to multiple doctors...trying to understand what's going on....and hoping for some kind of good news for a change. We had a big care conference with the attending docs from 4 different teams that are treating her. I am pretty confident she is getting the best care they can provide.
The thing I can't understand is why this is happening to my lovely, caring and compassionate wife. I can't think of anything she has done in her life to deserve this kind of crap being heaped upon her day after day after day. If there is a god, why is this happening to her...and why isn't he answering the prayers of all of her friends and relatives. What is this world has she done to deserve this and when is she going to get a break. I thought getting the new lungs would be the beginning of a new chapter in our life, but I did not expect that this chapter was going to be such a nightmare.
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