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This blog is now all about my personal life, including updates concerning Jerry's health. For quilt and pattern related posts please visit

Thursday, October 30, 2014

Hey WE LOVE craziness!

I know you know that.
I know when you get a blog post from me on this blog its about that crazy thing we call life.
It's been a bit, if you are on facebook, then some of this is old news, so I'll kind of make this blog post a journal type so you can scroll to today's date to see the latest. If you've not been on facebook to read the latest since my last post..well.. best take some of that medicine that will help with motion sickness. You are about to get dizzy!

Sunday Oct 5th
That was my last entry that you read..we were on the way for our evening shot run for Jerry's blood clot. His leg was BAD. Red, swollen huge, he could barely tolerate the pain.

Monday Oct 6th
We woke that morning to go get his shot. The leg was worse. While he was getting the shot his Chron's doctor called me and I explained everything that had gone on. She HIT THE ROOF! She immediately called Cameron's ER (with me standing right there so I watched the convo). Man that woman (love her) can move mountains! Her first name is Tuba. I wont try to make you remember her last name... just remember Ms Tuba..
ANYWAY, she hit the roof and Jerry got admitted Immediately. Right then and there. Within 10 minutes he had an ultra sound on his leg. Guess what?? No blood clot. So that was a mis diagnosis and we had to drag Jerry out twice a day for the wrong medication! Oh..while I am at it, the Friday night diagnosis about his stomach was wrong as well. It was just fluid build up around his liver due to being out of Lasix for just a couple of days.
They waited most of the day to get Jerry a bed at KU but it never happened so he had to spend the night in Cameron.
The head of nursing administration called me that evening. Seems that after both mess ups over the weekend...we won't have to worry about any of the bills. They've all been taken care of..and all parties agree that we will not use Cameron again. (Jerry is too complex for them. )

Tuesday Oct 7th.
No beds in KU. They set Jerry up with a Dr in Cameron since he was stuck at that hospital. He's on very strong drip antibiotics for his leg. The Dr is great, nice and trying her best to help.

Wed thru Fri Oct 8-10
Jerry remained in Cameron, there never was a bed open for him at KU. There was an orthopedic doc called in concerning his leg during this time. It was determined he had cellulitis, behind the knee, so it was an unusual location but it was red from thigh to toe. Because KU seemed out of the question he was transferred on Friday from Cameron region to North Kansas City Hospital.

Sat -Fri Oct 11- 17
Jerry was in NKC hospital a week. They released him to come home that Friday. The leg was doing better, and he was given strong antibiotics to take at home. He could barely walk so he had a walker and a wheelchair.

Sat - Sun Oct 18- 26 ( a week)
Jerry pretty much just worked on resting and recovery. He stayed home and mostly in active. His leg improved. He did take a hard fall but was ok. He was still suffering from nausea(for the last few weeks) and was losing weight. Very little appetite.

Mon Oct 27
PCP appointment. Leg was ok. Liver and Kidney enzymes elevated, he felt Jerry needed to be seen by the Liver team ASAP. Dr was thinking the nausea had to be Liver related. Or Chrons related.

Wed Oct 29 (yesterday)
Appointment with Ms Tuba. She was so very thorough, and so very nice. We talked about lots of things and she too felt very concerned about his liver and kidney enzymes. She wanted him admitted into the hospital but conferenced with the liver team and decided to leave it to them to decide the next day. She did push and pull strings and got Jerry away from the liver doc that was handling his case and bumped up to the boss over that doc. So Jerry had a new doc added to his team.
Ms Tuba told me she is going to do everything in the world to keep Jerry going until Stephen graduates high school and that she had better get an invitation. I cried. She got tears in her eyes but turned away and got it under control. I love you Ms Tuba.

Thursday Oct 30 (today)
Jerry had the big appointment with the liver doc taking over his case. WOW. It was very...informative. He said that he felt we have been ping ponged around and that no one has told Jerry any straight answers about his liver so that is what today was all about. So here are the straight answers we walked away with:

1) Jerry is not even close to the numbers for needing a transplant. Last we were told he was a "14" and they transplant at 22. Today he was told he's more like a "10" and they transplant at "25". So..he's not even close. The liver IS causing some fatigue but not to the extent that Jerry is having.

2) Jerry has more than one red flag. He might not even ever be eligible for a transplant. Strokes, diabetes, cancer... red flags. He certainly has a few of them. SO he needs treated NOW..forgetting the idea of a transplant.

3) The hep c treatments will begin..get this.. within 2 weeks! Last we heard, he wasn't even getting them, so pfft, never mind. We were told today his insurance has approved them (even at $1000 a pill) and he is good to go! These will make him more fatigued than he is now, but in the long run he will get better in the liver area. So the holidays might not be great, but we have the New Year to look forward to. The doc said Jerry is actually the worst case he's had..with this many OTHER issues and fatigue so he doesn't know how he will tolerate it. ALL that take the treatment complain of fatigue, but none have gone into it with the weakness Jerry has. So...we just take it easy over the holidays. 12 weeks from the start of treatment to a better tomorrow !!!

4) In a couple of weeks we have to go to 3 days of clinics, screenings and classes. Long enough days they offered to give us hotel discounts. Never mind that we have a 4 yr old. (LOL the doc was shocked at that news today.) So.. I've called in my good friend Helen and she will care for Stephen that week. Please don't let it snow!

5) Fatigue. The doc said that Jerry is a 52 year old man living in the body of a 75 year old. He even wanted to know if he'd ever been tested for myasthenia gravis. Now that was ODD and we were both SHOCKED when he asked that. (as will Jerry's poor momma be when she reads this, Love ya Nanny!). Why? because it is RARE is what Jerry's father had and passed away from. It's NOT hereditary. So the chances for father and son to have it..well it probably has never happened before.
So he is being referred to the neurologist for testing to figure out what in the world is causing him to be so weak.


And there we have it. I am so happy tonight to know that my husband isnt dying of liver disease. It sure looked like it and I knew the levels were climbing, but doc seems pretty positive that the treatments will fix him up for years to come in the liver area.

Crossing one more thing off the list..right?