Dad has been sick since about August 3, 2008. We took him to the hospital on August 18, 2008. We are marking his journey. I am including emails that were sent out to his family.
Aug 21, 2008
I had just left the hospital after waiting a couple hours for the doctor to show up when he called me with an update on Dad. He actually had good news. He told me the tests they had done checking for viruses that had come back were all negative. He told me a new doctor was now checking him for Lupus. If Dad has Lupus that is great news because he can receive steroid treatments…and it will only take a few days and he would leave the hospital for rehab…and then…back home. I am hopeful we will know what is causing Dad’s sickness by Saturday or Sunday.
When I know you’ll know.
The Adam’s Family.
P.S. I wish all of you could have seen Dad giggling at Rachel and me when we were visiting him on Thursday. I will never forget that smile.
Aug 24 2008
Dad’s condition has taken a turn for the better. He is about as good as or slightly better than he was a week ago Monday when I drove him to the emergency room. Here is the current scoop. Dad’s progressive dementia was so rapid the hospital has assigned a team (and I mean a TEAM) of doctors to him. He also has someone from the CDC keeping an eye on the information coming and going. The doctors have not ruled out CJD, but this virus does not create white blood counts which he has in his spinal fluid. They have not ruled out a few other diseases, but all of these do not cause the physical manifestations he is showing, specifically his diminished capacity and mental dementia. At some point they will stop testing him, either when they run out of tests or he recovers. These tests are not painful or terribly intrusive. In the mean time, they have been treating him with steroids for meningitis. He was on his third day of treatments as of yesterday…and I attribute his improvement to those treatments. That is good news. If he makes reasonable improvement and can come home, we will continue having him tested but as an outpatient. The tests are extremely important for a number of reasons, some of which have more or less to do with the safety of my family and the community. I am aware that these tests and his stay at the hospital may seem pointless, but I assure you they are not. However, if they do become pointless because Dad is diagnosed with a terminal illness, at that point the tests will stop and we will make Dad as comfortable as possible and as happy as possible. Additionally, he will be cared for in an environment that is as friendly, familial and safe as possible.
Aug 28, 2008
I've had to pass on difficult news before, and this stands with some of the most difficult. I had a meeting with Dad's doctors yesterday after they called and requested I come in and speak with them. After almost two weeks of extensive, exhausting and numerous tests all ran on Dad in hopes of finding a treatable cause for his illness, they have finally albeit reluctantly settled on a diagnosis. They finally found a very safe way to run an MRI on Dad. The MRI had very specific findings that supported their original belief that Dad is suffering from what is called "Creutzfeldt-Jacobs disease." Because this disease is untreatable and is terminal, we are preparing our home for Dad to return post hast under the direction and recommendations of hospice. The life expectancy for someone who contracts this disease is as short as 4 months and as long as 12 months after the initial symptoms manifest. Dad started showing these symptoms about August 3rd. Our hope is to have Dad living with us for the duration and to open our home to anyone who feels like visiting during the interim. Anyone one or any family is welcome at any time and for any reason. Please make 24 hours notice arrangements with Sonya and we will be sure to prepare for any privacy you would or wouldn't want. (Because of the full house situation we won't be able to accommodate sleeping arrangements.) Here are some details that my be helpful: The doctors have assured us that we are completely safe having Dad come home to our family. The doctors and nurses are not taking protective measures when handling him, other than the usual. Dad may have contracted this early in his military career or maybe when he was on one of his numerous travels with Vicki, or perhaps spontaneously. Dad was able to remember who I was only two days ago, but now he only recognizes that I am someone he can feel safe around. But he does not know me as Adam his son. When you visit do not expect him to be able to talk or respond much and do expect to do 100% of the talking. I can't think of anything else to add at this time. Please feel free to respond with questions.
All my love,
Hawaiian Macaroni Salad
1 day ago