Well, yesterday morning Big Bird's doctor called, the antibiotics are working Yippeeeeee!!! His bili was down from 25.2 on Tuesday (1/23) to 16! Good news. His doctor also said that he could post pone the ERCP that was scheduled for tomorrow until after Transplant Evaluation-so of course he did! Hopefully the Transplant hospital will call soon. Medicare if effective tomorrow. HOORAY!!!! This is so exciting. Some anxiety of him getting sick will be removed-because at least now he can get the medical attention he needs without the added stress of money being the issue.
There is an organization that is focused on bring research and attention to PSC-the liver disease which affects Big Bird, PSCPartners Seeking a Cure, they are sponsoring a virtual walk, you can register at www.pscpartners.org. It is $25.00 to register, they send you a T-shirt, a pen, envelope you collect signatures and monies-then send it back to them, they will display it at the conference in April. We won't be there, but I think it is still a worth while cause and one that actually goes directly to a disease that gets little funding as it is! So if you can-help out and register!
I will post as soon as we have transplant eval dates!
Wednesday, January 31, 2007
Monday, January 29, 2007
Medicare we await thee
On Thursday, February 1, 2007-Medicare will be EFFECTIVE!!!!!!!! You have no idea what a relief this is!
On Thursday, February 1, 2007, Big Bird will be going in for a procedure called an ERCP. They are hoping to dilate his bile ducts to drain some of the excess bile from his system. Please offer prayers and good vibes to us as we deal with this. This isn't the first ERCP by any means, but complications can arise as with any medical procedure and general anesthesia.
On Thursday, February 1, 2007 the Transplant hospital will be able to begin verifying coverage. We should have an appointment within 2 weeks for evaluation.
As of today we are 6 days fever free. Yippee......As of today we are 3 days from health coverage!
On Thursday, February 1, 2007, Big Bird will be going in for a procedure called an ERCP. They are hoping to dilate his bile ducts to drain some of the excess bile from his system. Please offer prayers and good vibes to us as we deal with this. This isn't the first ERCP by any means, but complications can arise as with any medical procedure and general anesthesia.
On Thursday, February 1, 2007 the Transplant hospital will be able to begin verifying coverage. We should have an appointment within 2 weeks for evaluation.
As of today we are 6 days fever free. Yippee......As of today we are 3 days from health coverage!
Wednesday, January 24, 2007
Fevers
So, Big Bird woke up at 3AM with a fever at 6am it was 100.01, at 6:30am is was 100.04, at 6:35am we take alieve, got the fever down (wooohooo). Called his doctors office, they had him in for STAT blood work......
We got the blood work results back (of course they came back when I wasn't home so I didn't get them all) but my brother total bili came back at 25. He has been feeling "fine". A little anti-social but fine, considering-he has been stressed with all this waiting and anticipation that Medicare takes effect next week.
Well his doctor is not real thrilled with the bili count-it is the highest it has ever been. He is wanting to do an ERCP (knowing that the last ERCP done in Feb. 2005 he told us that stenting was no longer an option do to scarring). I just don't know what to think of the latest bili lvl. I really wish I had the other blood results-when I talked to the nurse this morning, she didn't have his chart just orders to get an ERCP schedule that his doc has his chart....
Do I worry, I don't know I ARGGGGGGGGGG
We got the blood work results back (of course they came back when I wasn't home so I didn't get them all) but my brother total bili came back at 25. He has been feeling "fine". A little anti-social but fine, considering-he has been stressed with all this waiting and anticipation that Medicare takes effect next week.
Well his doctor is not real thrilled with the bili count-it is the highest it has ever been. He is wanting to do an ERCP (knowing that the last ERCP done in Feb. 2005 he told us that stenting was no longer an option do to scarring). I just don't know what to think of the latest bili lvl. I really wish I had the other blood results-when I talked to the nurse this morning, she didn't have his chart just orders to get an ERCP schedule that his doc has his chart....
Do I worry, I don't know I ARGGGGGGGGGG
Friday, January 12, 2007
Happy New Year
Happy New Year! Everyone. I hope this year finds all of our friends and family, peace, hope, charity, love and prosperous.
We are in the home stretch of Big Bird receiving Medicare Benefits. December was a CRAZY month. Lots of forms to fill out. I am truly amazed at how difficult they make signing up for Medicare. Because, you don't just sign up for Medicare, there is Medicare Part A, then Medicare Part B, then Medicare Part D, then you go into supplemental insurance, blah blah blah. It is completely overwhelming, then I challenge you to try and find someone that works in one of the government offices with apathy and sympathy for what you are trying to figure out. They do exist, I managed to find one or two. Cherish them if you find them, because those one or two out there, can enlighten you to programs you kick yourself for not learning about earlier.
We learned about programs such as SLMB, QI-1. Big Bird qualifies for both of them, but was only approved for SLMB. We will take this, as it will help cover the Medicare Part B fees. Know we anxiously await response to his application for assistance for Medicare Part D. It is under review. Regardless of the fact that, that was the VERY FIRST application we ever submitted. His Medicare Coverage is affective February 1, 2007. YIPPIEE!!!!!!!
He is STABLE. This we are very thankful for! We do hope this trend continues. We have a follow up appointment for the last blood draw next week.
Now that Medicare is kicking into affect-we patiently await to here about referral to the Transplant Hospital for evaluation. Stomachs have been turning, sleep has been disturbed. Fear, Hope, Restlessness, Eagerness, Anticipation. Those can about sum up some of the feelings that go through our minds.
Well, I just thought that I would post the lasted on Big Bird. He is still alive and kicking. He (along with our cousin and myself-I am sadly to report-anxiously awaiting the release of World of Warcraft Burning Crusades- this is to happen next week-so we will be tide to our puters in our little fantasy land).
We are in the home stretch of Big Bird receiving Medicare Benefits. December was a CRAZY month. Lots of forms to fill out. I am truly amazed at how difficult they make signing up for Medicare. Because, you don't just sign up for Medicare, there is Medicare Part A, then Medicare Part B, then Medicare Part D, then you go into supplemental insurance, blah blah blah. It is completely overwhelming, then I challenge you to try and find someone that works in one of the government offices with apathy and sympathy for what you are trying to figure out. They do exist, I managed to find one or two. Cherish them if you find them, because those one or two out there, can enlighten you to programs you kick yourself for not learning about earlier.
We learned about programs such as SLMB, QI-1. Big Bird qualifies for both of them, but was only approved for SLMB. We will take this, as it will help cover the Medicare Part B fees. Know we anxiously await response to his application for assistance for Medicare Part D. It is under review. Regardless of the fact that, that was the VERY FIRST application we ever submitted. His Medicare Coverage is affective February 1, 2007. YIPPIEE!!!!!!!
He is STABLE. This we are very thankful for! We do hope this trend continues. We have a follow up appointment for the last blood draw next week.
Now that Medicare is kicking into affect-we patiently await to here about referral to the Transplant Hospital for evaluation. Stomachs have been turning, sleep has been disturbed. Fear, Hope, Restlessness, Eagerness, Anticipation. Those can about sum up some of the feelings that go through our minds.
Well, I just thought that I would post the lasted on Big Bird. He is still alive and kicking. He (along with our cousin and myself-I am sadly to report-anxiously awaiting the release of World of Warcraft Burning Crusades- this is to happen next week-so we will be tide to our puters in our little fantasy land).
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