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To be perfectly honest it's been my experience that niether a typical GI *nor* a CF GI is at all equipped to manage liver complications, not even those related to CF.
Micah has seen a Heptalogist since he came home. He had only ever seen a CF GI prior to that point, and they completely bungled...
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...
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...
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...
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...
Micah is very short gut at this point. He had significnt small bowel loops removed with his MI. He had his gallbladder removed at 3 months. At age 4, he had a bowel obstruction that cost him more of his small intestine, his illeoseccal valve, his appendix and a portion of his large bowel...
Micah is very short gut at this point. He had significnt small bowel loops removed with his MI. He had his gallbladder removed at 3 months. At age 4, he had a bowel obstruction that cost him more of his small intestine, his illeoseccal valve, his appendix and a portion of his large bowel...
HIS doctors cleared him to eat and drink! He got to eat Cheez Its before bed. That made him both wake up and get happy, at least until he passed out from the exhaustion from the excitement.
HIS doctors cleared him to eat and drink! He got to eat Cheez Its before bed. That made him both wake up and get happy, at least until he passed out from the exhaustion from the excitement.
They have FINALLY arrived at his hospital with his doctors. He's still altered. He's O2 stats aren't significantly better. He is "home" and that should make all the difference. Whereas we had to keep stressing to the local hospital HOW bad this was for him. Every nurse who sees him is...
They have FINALLY arrived at his hospital with his doctors. He's still altered. He's O2 stats aren't significantly better. He is "home" and that should make all the difference. Whereas we had to keep stressing to the local hospital HOW bad this was for him. Every nurse who sees him is...
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have...
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have...
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have...
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have...
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have...
I know of more than one parent who was themselves diagnosed with CF AFTER their child was diagnosed because they had a lesser mutation and were asymptomatic. I have no idea why you think it's impossible for your DH or you to have a different CF mutation beyond the DeltaF508 you *know* you have...
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