An Update and Prayers Needed for My Daddy

I know many of you if you are on my facebook page know a little of what our family has been through since Oct 28th, 2016 but I am back for a brief time to ask for prayers for my daddy.

My daddy just celebrated his 80th birthday. If you saw him, you would think he was 60 or 65. He was constantly looking for things to fix, worked on equipment for a close friend of his (and loved all the challenges) and constantly outside working or just doing something.

He loved to go deer hunting. He loved to feed the ducks at his friends pond.

He loved all his grandchildren.

He loved his children, me and my brother.

We had a close relationship in the last 2 years especially 

I could always know my daddy would call me here in the North GA mountains if there was a cold front approaching or a snow storm.

When my stove broke and I thought it was just old, he came here and fixed it.

He has talked me through many a phone conversation in the past year about things usually always calling at a certain time on Sunday nights.

I still have a voice message saved on my cell phone and my house phone because I will not hear his voice again.

The third week in October, daddy thought he had a virus. Ultimately, this went on for a week and he was taken to the hospital and thought he had bacterial meningitis.

I will never forget the phone call I got and when.

It was 2 days after he was sick. It was just 2 days after my last day of working full time in a private practice that was being bought out by a larger corporation and I had felt after much prayer a need to change. I remember as I listened to K-Love radio as usual on the commute home and my car filled with my last office supplies, that I prayed to God, "ok God what's our next assignment". I already had a part time inquiry and was pleased with that but just praying to make sure my next assignment was His will.

Well that didn't come about because my life stood still when I arrived at Neuro ICU 3 hours away from where we live. 

My daddy was struggling very hard and he was restrained as he was having so much seizures. From what I was told he started having many neuro symptoms to the extreme that they diagnosed him bacterial meningitis. I first asked what his white cell count was because I was still in the provider mode and when they told me 9,000 and 11,000 I suspected viral meningitis because those are actually normal white cell count.

However, he did have brain swelling on the CT, obvious neck torsion and some foot drop.

I cannot put into one post here what life has been like since then.

The next day he was put on life support when my brother and I were called from the waiting room to be told he was no longer able to swallow and may aspirate.

My brother said yes. Of course we thought this was a short term thing to get him over the illness.

My daddy in 10 days to 2 weeks came back positive for West Nile virus. YES, my daddy wore mosquito repellent, in fact, I remember him many times telling me and joking that if we didn't we would get this virus.

They did a lumbar puncture and it was positive for West Nile Virus.

My daddy was the 5th of the 6 reported to the CDC for the year 2016 in the state of GA.

Most people with West Nile Virus (from a mosquito infected with the virus from dead birds usually) do not even know they have the infection as it is transient and causes a viral or flu like syndrome. 80% in fact.

The other 20% have longer syndromes but only 1.5 /100,000 people get meningitis/encephalitis which is brain and spinal cord infection.

He was one of them. 

My daddy stopped moving his arms a couple of days when I got there and literally his eyes were rolling around. He was in and out of a conscious state.

The doctors thought the reason why he was not moving at all by the end of the week was that he had some IV sedation. I stayed at night in the waiting room on a cot and during the day for about 4 weeks of the 5. I went home in between to get new clothes in the suitcase and back and back I went.

There were times he could open his eyes are start focusing and times he was in a glaze.

It was those times when I would see his eyes open and he would look at me when I called his name that I talked to him. Sometimes I would sit in and talk late at night with him, read to him, and in the early morning, play music he liked on my Ipad.

The last 3 months have been a great big rollercoaster.

They finally figured out that daddy could not move.......because daddy was paralyzed and from the neck down due to the virus.

The virus attacked his motor neurons but saved his sensory neurons, therefore he can feel but cannot move.

There is NO treatment for West Nile virus at this time but supportive care.

That is a hard thing to swallow and watch.

They did try a plasma transfer infusion and for the short 10 days he was able to slightly move his right arm up to his chest. But then that stopped. He can squeeze my hand most of the time. Sometimes he is too weak.

He was transferred to a LTAC unit hospital which is an acute long term rehab hospital. The main focus was to try to restore some of his strength and possibly the paralysis would go away. Also to wean him off the ventilator.

Still on ventilator, still on PEG tube (feeding tube into stomach), catheter, IV's etc.

He became more clear and knew about that he was in the hospital, the doctor told him what his disease is by this time, and they had given us options due to the opinion of 3 doctors or 4 that he had reached a plateau.

I would go on weekends and my brother would go through the week. Daddy was never alone.

Daddy became more alert and nod yes or no but his jaws are partly so weak he can't much close his mouth and the rest is paralyzed.

Due to insurance and the doctors opinion after 5 weeks at this hospital, he had no choice but to go to a nursing home. He has been there for 4 days now.

I don't know what the future holds but we are taking it one day at a time. I have been in the bed for a week with spinal pain from cervical disc problems long term. It's getting a little better but still something that is slowing me down.

Our family needs prayers and I just thought I would put an update post.

I will still be active on the blog. Now that I am not working 50 hours or more a week, maybe this will be possible. I have written many things through this experience personally in a journal.

Even after working 36 years in the medical field, being on the other side with your parent is overwhelming to say the least.

I've learned to explore more on the topic of West Nile Virus, end of life decisions, grief, and how much caretakers are effected.

On a positive note, I have knitted like crazy through the past few months so I will post some of the finished objects soon!

Until later,

Jennifer