testing --- me and technology??? any how this is part 2 of all the fun stuff I was writting about nancy and dans year
So now my mom is gone, my husband is still in the hospital, my kid is recovering from surgery--- what else???? Well nothing for a little bit any how. this brings us to the middle of May.
I'm working full time , driving to and from fargo on a regular basis trying desperatly to keep it together. Come the end of May, Dan goes to the nursing home here in Jamestown. What to expect??
Well actually great care. It was actually where one of my daughters worked during the summer as a CNA-- she is a nursing student. That may or may not have contributed to the good care he got there. The rehab was actually better then the REHAB center he just came from. Everyone worked hard with Dan. But Dan did grow bored there. He did want to go home, but I also wanted as much inpatient rehab my ins. company would provide.
In late July BC/BS insurance tried dirty tricks again... the called me on a friday afternoon and said they would no longer pay for his care. They advised me to go take him home or I would incur the cost of his care... FRIDAY afternoon.. Really, i contacted the nursing home. they were at a loss. the insurance company had been nickle and dimeing his care and would never approve a big block of care so no real longterm plans could be made. The nursing home said call your congressman and representatives-- I did --- then I was told call the govorners office PAYDIRT... between all the different pressures put on them they gave in. But the real PAYDIRT was telling th gov. office about Dans workers comp case that kept getting denied. I at their request sent over all the medical records and workers comp was ordered by the gov to revisit our case. But dirty tricks --- they sent it to a paid gun who said what they wanted him to say. denied again... then I started cause I finally had time to really review his case and the legal denials workers comp had done . I discoved 23 errors for real 23... 2 of which were out and out fraud and several mis -statements we will give them the benefit of the doubt. I became a political embarassment. so after a knock down dirty battle I won. this was in November 8 months of fighting!!!
Back to July Dan is still in nursing home. April goes into labor.... Had a difficult delivery she almost bled to death... her cervix had torn 3 ways ( the same type of birthing injury i had but mine was never repaired properly- thats why i had surgery in oct of 2010 and got so sick after surgery).. The baby was healthy. But april was not well for weeks afterwards all she could do was sit/lie on couch.... needed total assistance to shower and go to bathroom. so i would go shower dan at nursing home ( he only got a shower once a week) so we devised a system dan and I. we laid a bed covering on the floor around the toilet. and using a pitcher of water we basically showered him as he sat on toilet. most water went down his back into the toilet. The water that did not got absorbed by the bedding cover. then I wipped p the floor and put the bedding used in the dirty linen container. I did this everyday but shower day.
So I would go and shower my husband and then go to Aprils shower her and then go to work. Funny I had way more energy then... I also would bring the baby up to see dan. the nursing home had a kind cafe centered in it. so we would walk down to the cafe and have the special for most breakfasts. then he would be off to therapies. At night we would somtimes order in pizza for fun in his room and I would stick around till he took his pills. then go home to bed.
While Dan was in the nursing home it was painfully obvious that my home was not gonna work for dans cares. So I pieced together remodeling from friends and family... I was so lucky I had a few people to help. I paid them just the same . but aound here in ND at any cost a person is lucky just to get a contractor. 80,000.00 later here I am.
In July Erika looking for some fun and break from reality. Went water ski-ing with friends managed to pickup a parasite or something. she was sick for a couple weeks. more drama and fear. but all ended ok.
Late july dan had a pulmonary embolisim. the nurse found him on the floor with vomit all around him. Sent him to Fargo. At this point I don't want to go to Fargo to many bad memories but that is where all his records are...
We go to fargo the find the embolisim and a kidney stone. Coumadin for the clot , surgery for the stone.... But the floor he was on was full of coughing and vomiting. And yes I told the docs to wash their hands. I explained as best I could to the nurses my history and my reservations. But no one knew how to communicate there. I constantly found a nurse or a aid trying converse with him. and his answer to everything -NO-. so a food service person would take away his food. No one knew when surgery would happen. He hadn't eaten in 2 days and for Dan that was always an issue. I finally flipped out and took him down to the cafeteria to eat. And yep you guessed it they finally come for surgery. The surgeon comes up and yells at me. I yell at him and for effect throw my phone at him. At this point I had asked for a patient advocate who just joined in with the doc in an effort to impress..... I melted and the advocate actually told me he did not care about my history ( yes it was another friday afternoon and he had no time- he was mabey 25 yrs old) I finally left the hopital after my daughters came to be with dad... The Dan went on a hunger strike and pretended to be comatose... he actually fooled some nurses. So I came back after a good days sleep. Got my crap together and talked with a very good hospital supervisor... she was a true pro. Dan "miraculously" got better when I came back. got his surgery and I took him home . well back to the nursing home anyhow..... He returned to his therapies at the nursing home.
Dan came home in mid september. He had his first seizure sept 26... And it was a big one... his oxy was at 48 percent after he had oxy for about 3 mins from the sheriffs dept. The ambulance arrived and checked his vitals 48 percent... he seized so hard he broke muscle. Yes it is possible. and the toxins from that are painfull. so he was hospitalized for 2 days and given painkillers. Which started a cycle of constipation. Which started a depression.They came out and did inhome therapies. Dan improved some,but what he lost was in terms of stroke time was huge he regressed at least 4 months. And came to understand he was not going to get better anytime soon. This contributed to the depression.
He was put on the drug Keppra which worked terrifc as he had no more seizures... But it became apparent that the Keppra was contributing to the problem of depression. Actually credit to Dan has to be given for that revalation. He started to refuse the big purple pills. He would take the other pills but not those. So I researched and statistics showed up to 28 percent of Keppra users can be affected with severe depression. So Dan cold turkied himself off of Keppra. Odd he did not have any seizures , but the depression was so severe. He would not eat, not drink and did not want to do anything. He required emergency hyderation several times.
In mid December he got really sick. He again was hospitalized here in Jamestown (thankGod) He had a bowel obstruction. His not eating and not drinking combinded with the semi paralyzed intestines ( from the stroke) resulted in the bowel obstruction. They used a nasal tube to resolve the issue for the time being. But the surgeon made it clear Dan will most likley need surgery in the future, but for now leave it alone.
Now we are into January. Beth the youngest has been sick off and on. No time to check into it- just rolling with the punches. Dan is still depressed and insisting I quit my job. He is so so sad. It was so hard to leave and go to work. I requested partime status. And then seizure activity raised its ugly head... Dan had been taking lemictal a dual drug for both seizures and mood stabilizations. He was placed on this when he refused the Keppra. But the titration time of lemictal is a long and slow climb. After new seizure activity they added dilantin to the mix. He still has an occassional breakthrough seizure. But he is still not at theraputic levels as of yet.
Dan has slowly been deciding to rededicate himself to therapies. He has formed a bond of sorts with the therapists. The therapists seem to enjoy his hard work ethic. Dan has never been a half assed type of guy. It has always been all or nothing for him.
Our family is still plagued with health issues. Bethany the 15 yr old still is struggeling with health issues. They think she has ulcers and is on medication for that. I myself have an old illness visiting me. Anemia just had my blood checked 7.4 is my hemoglobin. I new I was way to tired even with all the stress I've been under. So I'll need to adress that issue on Monday. Next thursday the bioness guy is flying in. Dan has been approved for the arm/ hand bioness. And they are also bringing in a leg apparatus for him. I leg works I am just going to buy it outright. Dan is on such a good roll with his therapies that waiting for approval could and will take weeks. I'm moving when dan moves . not waiting for the endless paperwork and buerocracy of insurance to approve. Like everyone else I'll just plug along... one day at a time.