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Cherylwithone
Guest
Tom, So sorry tohear this. Positive thoughts and prayers.
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Back into the hospital tonight
- Thread starter just1more
- Start date
C
Cherylwithone
Guest
Tom, So sorry tohear this. Positive thoughts and prayers.
TestifyToLove
New member
The news is not good. Apparently, yes, everytime Micah get sick he IS now going to have rapid liver involvement.
He got a cold, nothing more. He now has a nasty lung exacerbation (probably from having NO immune system at this point) and his liver went wonky fast.
The plan at this point is another week inpatient for IVs and RT. He's probably going to need home oxygen now, which may allow him to weather something like a common cold without ending up in the hospital. The Liver specialist also wants to change how we fight the ammonia situation. He's been on Rifaximin the first week of every month since October. They want to start alternating him two weeks Rifaximin, two weeks Flagyl. Pulmo wants to put him on quarterly IV antibiotics to prevent lung infections, but we didn't even make it a month.
When we get the family moved in two weeks, we'll be moving to a Hospice referral soon.
He got a cold, nothing more. He now has a nasty lung exacerbation (probably from having NO immune system at this point) and his liver went wonky fast.
The plan at this point is another week inpatient for IVs and RT. He's probably going to need home oxygen now, which may allow him to weather something like a common cold without ending up in the hospital. The Liver specialist also wants to change how we fight the ammonia situation. He's been on Rifaximin the first week of every month since October. They want to start alternating him two weeks Rifaximin, two weeks Flagyl. Pulmo wants to put him on quarterly IV antibiotics to prevent lung infections, but we didn't even make it a month.
When we get the family moved in two weeks, we'll be moving to a Hospice referral soon.
TestifyToLove
New member
The news is not good. Apparently, yes, everytime Micah get sick he IS now going to have rapid liver involvement.
He got a cold, nothing more. He now has a nasty lung exacerbation (probably from having NO immune system at this point) and his liver went wonky fast.
The plan at this point is another week inpatient for IVs and RT. He's probably going to need home oxygen now, which may allow him to weather something like a common cold without ending up in the hospital. The Liver specialist also wants to change how we fight the ammonia situation. He's been on Rifaximin the first week of every month since October. They want to start alternating him two weeks Rifaximin, two weeks Flagyl. Pulmo wants to put him on quarterly IV antibiotics to prevent lung infections, but we didn't even make it a month.
When we get the family moved in two weeks, we'll be moving to a Hospice referral soon.
He got a cold, nothing more. He now has a nasty lung exacerbation (probably from having NO immune system at this point) and his liver went wonky fast.
The plan at this point is another week inpatient for IVs and RT. He's probably going to need home oxygen now, which may allow him to weather something like a common cold without ending up in the hospital. The Liver specialist also wants to change how we fight the ammonia situation. He's been on Rifaximin the first week of every month since October. They want to start alternating him two weeks Rifaximin, two weeks Flagyl. Pulmo wants to put him on quarterly IV antibiotics to prevent lung infections, but we didn't even make it a month.
When we get the family moved in two weeks, we'll be moving to a Hospice referral soon.
TestifyToLove
New member
The plan is to keep him until Monday, and give him his anxiety meds before every breathing treatment so he'll stop raging and fighting them.
We'll discharge to home IVs and likely oxygen PRN as well. We'll need an appointment in Syracuse as soon as we get him up there, but we're hoping we can get him stable and strong for the actual move.
CF doctor said normally he would *not* start oxygen yet for the lung progression Micah is having. However, everytime Micah has lung struggles, his liver bottoms out, so we need to see if oxygen will give us enough time to try to manage his lungs outpatient without ending up inpatient because of the liver. He already has a Heptalogy appointment next Tuesday. His Heptalogist already mentioned that he wants to try changing Micah's liver antibiotics to try to keep him home.
I think at this point, the goal becomes trying to keep him home, happy, and comfortable more than anything else.
We'll discharge to home IVs and likely oxygen PRN as well. We'll need an appointment in Syracuse as soon as we get him up there, but we're hoping we can get him stable and strong for the actual move.
CF doctor said normally he would *not* start oxygen yet for the lung progression Micah is having. However, everytime Micah has lung struggles, his liver bottoms out, so we need to see if oxygen will give us enough time to try to manage his lungs outpatient without ending up inpatient because of the liver. He already has a Heptalogy appointment next Tuesday. His Heptalogist already mentioned that he wants to try changing Micah's liver antibiotics to try to keep him home.
I think at this point, the goal becomes trying to keep him home, happy, and comfortable more than anything else.
TestifyToLove
New member
The plan is to keep him until Monday, and give him his anxiety meds before every breathing treatment so he'll stop raging and fighting them.
We'll discharge to home IVs and likely oxygen PRN as well. We'll need an appointment in Syracuse as soon as we get him up there, but we're hoping we can get him stable and strong for the actual move.
CF doctor said normally he would *not* start oxygen yet for the lung progression Micah is having. However, everytime Micah has lung struggles, his liver bottoms out, so we need to see if oxygen will give us enough time to try to manage his lungs outpatient without ending up inpatient because of the liver. He already has a Heptalogy appointment next Tuesday. His Heptalogist already mentioned that he wants to try changing Micah's liver antibiotics to try to keep him home.
I think at this point, the goal becomes trying to keep him home, happy, and comfortable more than anything else.
We'll discharge to home IVs and likely oxygen PRN as well. We'll need an appointment in Syracuse as soon as we get him up there, but we're hoping we can get him stable and strong for the actual move.
CF doctor said normally he would *not* start oxygen yet for the lung progression Micah is having. However, everytime Micah has lung struggles, his liver bottoms out, so we need to see if oxygen will give us enough time to try to manage his lungs outpatient without ending up inpatient because of the liver. He already has a Heptalogy appointment next Tuesday. His Heptalogist already mentioned that he wants to try changing Micah's liver antibiotics to try to keep him home.
I think at this point, the goal becomes trying to keep him home, happy, and comfortable more than anything else.