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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?

Sunday, October 5, 2014

He makes my heart go pitter patter

Does your husband make your heart go pitter patter still too?

Well mine does, but more often its more like a pound, pound, pound sort of feeling. Like this weekend for instance...

We decided on Friday it would make an awesome date night to visit the ER. When we go on these dates it is always such a decision.

Do we attempt KU? NO. NEVER. HATE their ER.
Do we attempt Liberty? Sure, we love them. They just can't handle Jerry. And they tend to be busy at night.
So we decided Cameron ER would be a nice quiet place for our Friday Evening Date.

It was a good decision. The Dr on duty was great. We've never had him before. Only he didn't have great news. Jerry went in for abdominal swelling and pain. It was sort of a sudden swelling/pain, which was the reason for concern. Jerry needs to see his GI doc this week to be sure, but it looks like Jerry has Spontaneous Bacterial Peritonitis. Um, that is serious stuff. Google it. We got Jerry home after a late night, settled in with some new meds, etc.

Saturday night Jerry decided he just couldn't get enough of our Friday date night and so he decided to repeat the process only this time with more bells and whistles. He has been having pain for a couple of weeks and thought it was his sciatic nerve but then, late last night the pain was unbearable and we couldn't even get him to the car. I had to call an ambulance to transport him for me. It seems he has developed a blood clot or clots in his leg. Classic DVT. Classic in that he needs shots in his stomach every 12 hours at the least until Monday morning at which time we need to get him to KU so that they can do an ultrasound. Most DVT patients take Coumadin for 6 months. Jerry cannot take Coumadin.

I feel the need to gently remind you that he has already had multiple strokes and is already on the strongest blood thinner his liver can tolerate. (I am not so sure its tolerating.)

We leave in a couple of hours to go for our evening shot run. And again tomorrow. Then I wait by the phone for one of the doctors to call. Not sure which will call first. It is my prayer that he just gets admitted to KU tomorrow and they handle it all from there. Then I can come home and have a good cry after I do some work and feed the boys and snuggle with them. Then I can put them to bed and say my prayers and ask God to either heal him or take him. Just please, fix him. Relieve his pain.

Jerry and I are working on his will this week. And other wishes. His mother has been called in. Again. Now we are not saying he is on deaths doorstep. We are just...being prepared. He could go in the next minute.. OR

Perhaps...just will be the same as two years ago and he will pull through all this mess and hang on to give me more pitter patters or thump thumps or roller coaster rides since he likes to make life exciting. I am all FOR IT. Let's go Jerry!

Thursday, October 2, 2014

It's quiet

I've told you before that when the Hillbilly starts going and getting all quiet, then there is usually an underlying cause. I have had friends asking for an update, and there are so many praying for us that I really should give you one, so here goes:

Concerning Jerry:
He is sick. His liver is quite enlarged now (can be seen even through his clothing), and just over the last couple of days, especially tonight, is painful. His Chron's is starting to spiral so tomorrow he is going to call several docs on his medical team and see about getting seen next week. On top of all his other problems his sciatic nerve is hurting him!

Sadly, he was supposed to go on a men's retreat this weekend. Someone sponsored to pay for Jerry and Seth to go. Jerry may have to say no, he will decide in the morning.

Concerning work/finances:
As of Monday, FMLA runs out so Jerry can be fired at anytime. This means he will lose his insurance. Cobra insurance is $1500 for Jerry. Talk about impossible. So?? We've heard no word on disability other than he has a case manager so we have NO idea what is going to happen. He may actually have to switch away from KU due to insurance. Did I say something about scary?

While none of us like to think about it..we have to. If Jerry loses his job, he will lose his life insurance. I no longer have a cushion to carry Stephen and I a few years until Stephen is a bit older if Jerry decides to walk the Golden Streets.

Money has me scared silly basically. I cannot make ends meet anywhere. How one lives on about $1000 a month is beyond me; but we are making an entire family live off of it; including a ton of meds. Sadly we have had to drop a couple of meds that I just cannot afford to cover.

(gosh I hate sharing this stuff and hope if you are just here for the quilting will stop now and go to my Hillbilly Quilt Shop blog and never visit this one again because it's become a journal of our journey with my husband's multiple illnesses and health issues. )

As for the Hillbilly....
I keep just trying to do everything I can!! I am TRYING to work as much as I can but also taking time to rest. Like tonight, its not that late. When I hit publish, I am off to bed. I had this high hope of my little shop carrying us through but after we just found out that he will probably lose his job and insurances etc, I don't know that the shop will do a thing to help, but I have to at least try, right?

Bless Stephen's heart, he loves the shop and can't wait for a visitor to come. No one has yet. They will my sweet boy. Stephen saw his daddy's tummy sticking out and all hard tonight, and got tears in his eyes. He knows all is not right with the world. But then, he has never known life to be any differently since Jerry has basically been sick his entire life.

A note to my Facebook world:
 I just wanted everyone to know in my group and such why I am so quiet. When things get tense, I get quiet. It's how I deal with it. So thanks for your understanding. I know so many of you have helped us out and I appreciate it so much.I just need a couple of days to deal with the latest (loss of job and insurances and Jerry's very visible declining health)  then I'll be back like normal, ok?