After three years of dating we decided to move in together and life was wonderful.
November 2010 that changed forever. He woke up at 4 am to use the restroom, got dizzy, fell, hit his head on the wall and passed out. He had a cold and he thought it was just from the congestion. I don't know the order of things, he may have passed out then hit his head, things happened and he doesn't remember it all. Being a nurse I kept an eye on him and when he was up and functioning I took him to urgent care. They did a CT scan and told us there was "something", probably an artifact, but we needed to follow up with his GP. At the GP they did an MRI and promptly sent us to a neurosurgeon. They had discovered a berry aneurysm. The aneurysm was sitting on his optic nerve and he was losing vision in that eye.
We made the decision to have it repaired and not risk it rupturing. That was the worst decision we made.
In Feb 2011 he went into a 12 hour surgery. They were unable to repair the aneurysm but were able to move it off the optic nerve so he was a candidate for a coiling procedure.
He spent almost a week on the neurology floor. They had PT, OT, and ST working with him. He was unable to walk. After 6 days they sent him home in a wheelchair with a cane. He fell the next day trying to walk. Back to the hospital, he bent the titanium plate in his skull, but was fine they told me.
Over the next few days he got worse and worse. He started hallucinating badly. I took him back to the ER and fought with the doctor. He saw nothing wrong. Every time he was in the room Lee was ok, oriented kind of. Then a nurse was in there when he started in again. He convinced the doctor Lee needed to stay and that it was not a psych issue but it was a medical issue. They figured out he was having a reaction to the steroids they gave him to prevent brain swelling. He was there another week and came home stable.
Months of therapy and he was then able to use just a cane 100% of the time.
I need to back up a little and talk about the tremors. He has an essential tremor. They aren't a big deal and don't cause death. He's had it 30+ years and his daughter also has it.
After his surgery, during a follow up his surgeon said the magic words "have you ever been checked for Parkinson's disease(PD)". Off to another doc, on to a new diagnosis and medication.
Life went on and we decided to get married. On July 24 2011 I married the man of my heart. Despite the complications life had thrown us we were very much in love. He is 29 years older than me, a Vietnam vet, but when we met he was much younger. I never would have thought he was his age if I had just met him on the street. Before the aneurysm we traveled, camped and hiked. We were active and lived life. PD changed that, slowly but surely.
Fall comes, it's almost a year since they discovered the aneurysm. Lee goes in for a routine physical.
It ended up not so routine.
It ended up a journey of more lab tests, more doctors, New words added to our medical vocabulary like bone marrow biopsy, chronic myelogenous leukemia(CML), and a doctor telling us it's incurable, but slow progressing. "Something else is likely to kill him before the leukemia".
I can live with that. I have him for a long time still right?
2013 November. I am at work and my parents call me. I hear words I don't want to. We are at the VA ER with your husband and they doctor said you need to get here immediately.
I got there within 30 mins. He was having severe dyskinesia and was very confused. They did labs, scans and I don't remember what else, but we weren't there long when they told us an ambulance is on its way and they are taking him to sacred heart for a direct admit to the ICU. He was in acute renal failure, metabolic acidosis and his white count was very high. When he got to the hospital he was unresponsive except to painful stimuli.
They kept him in icu only one night before moving him to the Neuro floor. During that time he was still unresponsive except for a grimace to painful stimuli, never woke up, never talked to me. After a week they sent a palliative care doctor to speak with me. His daughter was there and we discussed it with his son and the rest of his family, even those not local, despite them being far they are family and mean a lot to my husband. With their consent I made the very hard decision to place him on hospice care. 30 mins later I left, his daughter stayed with him. I had been gone 30 mins when I got a call "Jen, dad's awake and wants to talk to you".
He was fine. Weak but fine.
He spent another week in for therapy. We left with a diagnosis of Lewy body dementia, as well as the acute renal failure and acidosis.
We have had another incident similar to that, not near as serious though.
He keeps getting weaker and more confused.
I don't believe it's Lewy body dementia and neither does his PT. It's something we will address at his next Neuro appointment.
This first pic was early in our dating years. We were at the lake and had been boating and tubing. It was awesome and one of my favorite memories of us that I'm sharing with you.
This next one was last month.
