Sorry out of touch, dad is sick
Hi - I want to apologize for my lack of contact over the holidays or yor emails and phone calls that have gone unanswered. I need to explain so rather then doing it a few dozen times I thought I'd send this email and I'll put it on the board too so that hopefully I'll hit most people and they'll know I'm not ignoring anyone intentionally. I hope you all had a really really wonderful holiday and are starting a happy new year. Hug your family today and make sure the people that you love know you love them.
My dad is in the hospital at Christiana, room 2117. It's not real good. It is hard to explain exactly what is wrong but hopefully with a couple more tests done on Mon or Tues we may get some answers. The neurologist has only said that his symptoms raise a red flag for this really rare 1 in a million disease (CJD - think Alzheimer's on crack) where basically it has an onset of rapid dementia and is fatal. I am trying really really hard to resist looking it up on the internet until we get these other tests back. Steven looked it up & gave me the information that he thought would be useful. I don't think he wanted me to see the life expectancy information, especially since we don't know yet.
All of his tests - cat scans of head, chest, stomach, lungs, liver, kidneys - you name it - they all come back fine so far with just a few exceptions. 1. he has enlarged ventricles in his brain - we knew that and just Dec. 23rd the neurosurgeon ruled out something called "Normal Pressure Hydrocephalus". But - none the less he has these enlarged ventricles. 2. He had an EEG done of his brain that seemed to be partially inconclusive but did show slow brain activity.... you are supposed to have about 10 brain waves a minute and he was having 3 or 4. That test is being repeated on Monday. He also has a small amount of fluid in his lower lungs but no one is quite sure why nor are they overly concerned. And his blood pressure has been high (in the 200's) but they seem to have gotten that under control.
-- I guess since I'm telling you this I should give you a little history. His memory has been getting bad for a while now. I'd been really concerned it was the early stages of Alzheimer's since that is what his mother died from 20 years ago after being in a hospital the last 10 yrs of her life - and the 1st 10 of mine.
My first memory of feeling okay - something is really wrong was last Jan (2004) when a few days after watching the Super Bowl he said to my mom.. hey - when is the Super Bowl coming on? - That bugged me because the Super Bowl is like an Event you know? Not like just forgetting a regular game. Things from there just seemed like forgetful stuff - and it was taking him longer to do what was once simple tactile tasks for him. Like for Amber's baby shower - I asked him to glue a chair for me - probably should have taken 20 - maybe 30 minutes - but it took 3 hours. Or more. And he went to get something for the shower at Walmart in Elkton where he has been dozens of times.. but he said to my grandmother - "You know - I don't think I've ever been in this store before." I more or less begged him to please go to the doctor.
When he did go they found another problem with his pancreas. His blood enzymes were elevated and as it turned out one of his blood pressure meds, diaziad?, was the culprit for creating a chemical pancreatitus and when they took him off of that everything cleared up. That was early October. Then he also saw a neurological psychologist in October but I am not sure of what those results were. Our family doctor had ordered a cat scan & found the enlarged ventricles and had referred him to a neurosurgeon (Whom by the way I won't mention because I currently have no use for the man & feel he is about as useful as a bucket with a hole in it.) On December 9th he had a spinal tap. This was to remove some of the fluid causing the enlarged ventricles and if his memory improved then he would be a good candidate to get a shunt in his brain that would relieve the pressure and make him ALL BETTER 
. Not the case. Instead of better, his memory was worse and getting worse every day. He got a really severe headache about 6 days after the tap that lasted about 2 or 3 days with vomiting and nausea. Our family doctor had him go to the hospital for an MRI & see an eye doctor but also wanted him to call the neurosurgeon - who never called him back - loser. A few days after that he was coming to my house to take me to Christiana so Dr. Wynn could do an EGD while my mom stayed with the kids. She told him 3 times the night before what they were doing the next day. In the morning he said - "Now, what are we doing today?" When I got into the car with him he said, "Okay, what school are we going to?" ... this is not good.
Mom & dad were getting a TV & they were going to get it at the Walmart in DE. My dad said - "But what if we get caught brining it across the state line? We'll get a fine."
We saw the neurosurgeon on the 23rd of December and he said that since Dad's memory was worse rather then better, since he did not show signs of gait or loss of bladder control that he did NOT have NPH (Normal Pressure Hydrocephalus) and therefore there was no point in continuing the spinal taps or seeing him because there was nothing he could do for Dad surgically. He suggested seeing a regular Neurologist. This was late in the day on the 23rd which was Thursday & knowing everyone would be closed through Monday I asked what the urgency should be in getting him into a neurologist. Dr. K said - There is really no hurry. I said That's because you don't live with him - He said -what I mean is any other condition that may be causing the memory problem is long term so hurrying won't change anything. (4 days later he drops like a rock..)
Well, the next day on Christmas Eve we had dinner at mom & dad's with Gran, Lisa, Brian, Brandon & my crew & it was good. The next day, Christmas, they came to my house for dinner. That was Saturday. For the life of me I can't remember anything significant happening on Sunday. But Monday morning around 8 am my mom called & said my dad fell & was unconscious & the ambulance was taking him to Christiana.
Brian & I got to the hospital around 8:30 and I went back with mom. Dad was still unconscious - in a way. He was not awake or alert but he was very agitated & trying to push himself off the gurney - they could not get him to calm down physically even after giving him enough sedatives to "put down any man" as one nurse put it.
His blood pressure was going crazy and he stayed out for several hours. A cat scan came back fine. An Ammonia test came back very high but we've since been educated by the Gastro doctor that the test did not prove anything and more or less over the next few days just proved to show he'd be confused whether his ammonia level was 72 or 22.
We were in the ER for a while and they said they were admitting him to the "Stepdown unit" (( Think in between ICU & regular room)) The 1st stepdown room available was in the cardic stepdown so that's were we went.
Since Monday he has been in the hospital. Like I said lots of tests - lots of specialists - not many answers. He has been very confused all week, rarely in the present, many times somewhere else - some TIME else - like back in the 60's. Mom doesn't know what made him fall Monday morning, he was in the bedroom alone & she found him unconscious between the bed & the dresser. He has a Cardiologist, a Gastroenterologist, 2 Pulmonologists, a resident, an Infectious Disease doctor and a neurologist. But so far none of them can tell me why my dad suddenly looks me right in the eye and thinks I'm his sister Wanza, or some girl named Selma. Or thinks he is still living in Damascus, VA or on his grand Paul Bill's farm or moving furniture for his granny Ellie. He tried to get out of bed & fell and cut his head open at the hospital on Friday. He told me he fell off the porch into the dirt & concrete and hurt his head. It is really hard. I just want him to be okay and I'm really scared that he is never coming back. Or that he is locked away somewhere in his head and can't get out and that is why his body is so restless and agitated. Or that the brain cells that remembered me are just gone somehow - and the rest are following suit. There isn't anything I can do & I hate feeling helpless. We've tried showing him pictures & things - most of the time if you ask him where he is - he doesn't even know Christiana hospital. On Saturday they moved him to a private room after he was up all night, loud , agitated & disturbing other patients & not responding to the seditives.
Mom has stayed there every night. She's only gone home one time. Please keep them both in your thoughts & in your prayers if you have them. I hope this week they will find out something that will help him, something that will bring him back. Oh, the only thing all of them seem pretty sure about is that it is NOT Alzheimer's.. ironically enough. Anyway - they can use all the thoughts and prayers they can get right now.
Talk to you soon - K
. Not the case. Instead of better, his memory was worse and getting worse every day. He got a really severe headache about 6 days after the tap that lasted about 2 or 3 days with vomiting and nausea. Our family doctor had him go to the hospital for an MRI & see an eye doctor but also wanted him to call the neurosurgeon - who never called him back - loser. A few days after that he was coming to my house to take me to Christiana so Dr. Wynn could do an EGD while my mom stayed with the kids. She told him 3 times the night before what they were doing the next day. In the morning he said - "Now, what are we doing today?" When I got into the car with him he said, "Okay, what school are we going to?" ... this is not good.
Mom & dad were getting a TV & they were going to get it at the Walmart in DE. My dad said - "But what if we get caught brining it across the state line? We'll get a fine."
We saw the neurosurgeon on the 23rd of December and he said that since Dad's memory was worse rather then better, since he did not show signs of gait or loss of bladder control that he did NOT have NPH (Normal Pressure Hydrocephalus) and therefore there was no point in continuing the spinal taps or seeing him because there was nothing he could do for Dad surgically. He suggested seeing a regular Neurologist. This was late in the day on the 23rd which was Thursday & knowing everyone would be closed through Monday I asked what the urgency should be in getting him into a neurologist. Dr. K said - There is really no hurry. I said That's because you don't live with him - He said -what I mean is any other condition that may be causing the memory problem is long term so hurrying won't change anything. (4 days later he drops like a rock..)
Well, the next day on Christmas Eve we had dinner at mom & dad's with Gran, Lisa, Brian, Brandon & my crew & it was good. The next day, Christmas, they came to my house for dinner. That was Saturday. For the life of me I can't remember anything significant happening on Sunday. But Monday morning around 8 am my mom called & said my dad fell & was unconscious & the ambulance was taking him to Christiana.
Brian & I got to the hospital around 8:30 and I went back with mom. Dad was still unconscious - in a way. He was not awake or alert but he was very agitated & trying to push himself off the gurney - they could not get him to calm down physically even after giving him enough sedatives to "put down any man" as one nurse put it.
His blood pressure was going crazy and he stayed out for several hours. A cat scan came back fine. An Ammonia test came back very high but we've since been educated by the Gastro doctor that the test did not prove anything and more or less over the next few days just proved to show he'd be confused whether his ammonia level was 72 or 22.
We were in the ER for a while and they said they were admitting him to the "Stepdown unit" (( Think in between ICU & regular room)) The 1st stepdown room available was in the cardic stepdown so that's were we went.
Since Monday he has been in the hospital. Like I said lots of tests - lots of specialists - not many answers. He has been very confused all week, rarely in the present, many times somewhere else - some TIME else - like back in the 60's. Mom doesn't know what made him fall Monday morning, he was in the bedroom alone & she found him unconscious between the bed & the dresser. He has a Cardiologist, a Gastroenterologist, 2 Pulmonologists, a resident, an Infectious Disease doctor and a neurologist. But so far none of them can tell me why my dad suddenly looks me right in the eye and thinks I'm his sister Wanza, or some girl named Selma. Or thinks he is still living in Damascus, VA or on his grand Paul Bill's farm or moving furniture for his granny Ellie. He tried to get out of bed & fell and cut his head open at the hospital on Friday. He told me he fell off the porch into the dirt & concrete and hurt his head. It is really hard. I just want him to be okay and I'm really scared that he is never coming back. Or that he is locked away somewhere in his head and can't get out and that is why his body is so restless and agitated. Or that the brain cells that remembered me are just gone somehow - and the rest are following suit. There isn't anything I can do & I hate feeling helpless. We've tried showing him pictures & things - most of the time if you ask him where he is - he doesn't even know Christiana hospital. On Saturday they moved him to a private room after he was up all night, loud , agitated & disturbing other patients & not responding to the seditives.
Mom has stayed there every night. She's only gone home one time. Please keep them both in your thoughts & in your prayers if you have them. I hope this week they will find out something that will help him, something that will bring him back. Oh, the only thing all of them seem pretty sure about is that it is NOT Alzheimer's.. ironically enough. Anyway - they can use all the thoughts and prayers they can get right now.
Talk to you soon - K 
Kathy,
I will keep you and your family in my prayers...wow, I can understand somewhat..my grandmother had alzheimers. I'm glad they have ruled that out..but its so strange how fast his symptoms progressed after his fall. I pray that someone will figure this out fast for ya'll. I know how confusing and stressful this must be.
Try to stay strong! Many hugs to you!!!
Kimberly
Dana 
Hi Kathy
Wow. You and your family will definately be in my prayers. My best friend's Mom had Alzheimer's and Jean had insisted on having her Mom live with her and her family. I know from trying to give her and her family a break for a couple of weekends so that they could get away to refresh themselves that Alzheimer's is a horrible disease that affects everyone around the patient.
Have they checked his potasisum levels? When I was doing physical theraphy for my knees, I met an elderly gentleman who told me an experience that his wife went through. The doctors thought she had alzheimers. The poor lady even wound up in a psych ward, only to find out later that it was only a very low potassium level that caused all her systems. Once they got her potassium levels back to normal, her systems disappeared. I am not sure what doctors or hospitals were involved, but I do know that this happened in Delaware.
Please keep us updated when you can. If there is anything we can do to help, please let us know. We care.
Hugs.
Rose
Kathy,
I have been praying for you. I was in the Dr. Wynn's office on Friday with you and knew something must be wrong. you seemed very distracted. But now, with knowing this, I will continue to pray for you, your mom and most importantly your dad. I know that at times like this we find it difficult to understand and comprehend but I pray that God will give you His strength, understanding and wisdom to know what to do and when to do it. We will also agree that the physcians are annointed to find the problems and that your dad will begin to respond to their treatments.
May God bless you during this time,
Mama
Kathy -
WOW! There aren't any words. You will all be in my prayers. If there is ANYTHING you need. Please let me know. I am 5 mins from the hospital, so even if you need someone to watch the kids or bring you lunch or come give you a hug. Please call me.
I am not working now and I am absolutely free. 369 3515 or 494 6868.
Hugs and lots of love & prayers,
Valerie
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