to my readers

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

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 and..it 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 ER...at 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 perhaps..it 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:
SCARY!!!!!!!!
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?

Sunday, September 7, 2014

Blessed beyond measure

As I sit here on a Sunday morning, wishing I was in church, I was thinking about all the blessings of the last week.
First of all..why am I missing church? Well last week I missed because I cannot remember. Today I miss because of a medical problem that I pray will be fixed someday. We will have to place a bit of focus on me for a little season and get some things taken care of so that my crazy life can continue without these rude interruptions :) I cannot take care of a few little issues though, until we get financial things taken care of.

Jerry is about the same. Not really anything new to report other than the complete frustration at the KU liver treatment center who has had the paperwork for3 weeks so that Jerry can get some shared work leave..but the paper work has to be turned in BEFORE the 10th..and its the 7th. It's not in our possession yet. If it doesn't get here tomorrow I guess we go another entire month without pay.

Enter in the blessings.....

Last Sunday Jerry and I were kidless. So after he awoke we discussed things such as his will, etc. You know the things we don't really want to discuss and hope we don't need but know we need to make decisions anyway... I had to get out of the house and away from it all. I talked Jerry into a Sunday afternoon drive. We drove out to Hamilton Mo and looked around at the changes Missouri Star quilt company has made, making the tiny town into their own quilt empire. Then we drove back to our town and looked at some rental property..drove by "our" house, dreaming ..for later. Then we drove up to Walnut Street..which is the main road that runs through town.

We saw a little store front with a For Rent sign on it. I hopped out of the car at the same time a couple hopped out of their car and went into the donut shop next door. Being a Sunday evening, I knew it had to be the owners. Anyway, I liked the little store. It was small, but on the main road. I called the number..just to see what it would cost. The last place I checked was a ridiculous $1200 a month. I wondered if this was normal..so I called. Funny...the man on the other end of the line asked if I was standing outside peeking into the window. Yep, that would be me!

He came out of the donut shop, opened the door to the new shop. Showed me around (its tiny so it didn't take long), and told me the cost per month. $325. Did I hear that right? I did. Could I do this? Um no. Jerry has no income. I sure dont even make enough to cover his or his insurance I now have to pay and I really don't even know how we are surviving at the moment.

But, I do love a good dream. So, I went home and told my friends about it. And do you know what? By the Thursday everyone had worked together and set up a system. Several of them sent money in as a loan of sorts. I have to pay it off each time they purchase..by giving them a 10% discount until its paid off. Can you believe it? Do you know how much they donated to the cause? Well it is not all here yet..but it should be enough to cover the first months rent, the deposit of the last months rent, the partial months rent for Sept, and the electric deposit of $250. All in four days.

My daughter, who tends to not like the whole idea of my business and hasn't since the beginning, said" Well I guess I can't argue with that. I guess God took care of it, didn't He?"


So, therefore, in the matter of less than three weeks..I will be opening a store. A Hillbilly Quilt shop. Amazing. Just amazing.

Tuesday, August 26, 2014

And the verdict is in

I've not blogged in a couple of weeks because Jerry has just been going thru some tests and such and it was easier for me to just handle it all at once. Taking a look at each issue:

1) Chrons.
He had a colonoscopy and upper GI done last week. They found that his esophagus is getting infected again. He cannot take the Chrons meds because of his liver so they are actually treating it with blood pressure medication.
Sound odd? When your blood moves through the body, it actually uses pressure..and thus when you have a sore it throbs. If you reduce that pressure then that reduces the blood going to those sores and it calms them down so they (hopefully) will be less irritated. So that is what they are trying. He WILL have to have them go in and "tie off" the area before they start treating his liver. The sores are a problem child.
He also had a polyp in his colon. Biopsy showed no cancer but is the type that likes to turn into cancer (and he's had colon cancer before) so they will keep it monitored.

2) Hep C
He has to go through the treatments. A new medication comes out in October that they are waiting for and will start him on. He has to have these treatments because Hep C can transfer to a new liver. He is jaundice and weak so they are treating him with meds to keep the ammonia build up in check.

3) Liver transplant
When we last chatted this was just something way down the road if the treatments didnt work but things have changed. He will be getting a transplant. There is a chart, just like with any organ transplant. The chart goes up in the 40s or so (cant remember exact). He is currently at a 14 and it has been climbing steadily to that point for 2 years. Once it hits a 22 he will be admitted in the hospital immediately and given a new liver. Not really a waiting list..they will have him one within 48 hours after he hits "level 22" .

We have to attend classes and clinics to be ready for this.

--------------------------------------------------

How is Jerry?
He is ok. Coming to terms. Hard to deal with all that is wrong with him and you know how you are sick and just want it to be over? I cant imagine what the feeling is like to know that you will never again not feel sick. Even if you live 20 more years you just won't feel good. (when you consider all the things wrong with him. )
He is turning in disability papers to get long term from work. We wont get the funds for that until it hits 90 days. He doesn't think about the financial end alot..leaves that to me. I think he just has to draw a line of what he can take.

How is Stephen?
VERY clingy to his daddy. He wont let him out of his site. He's taken to watching a whole lot more tv than I would like normally but if that is what he can do with his daddy then so be it. His current favorites are the old black and white Lone Ranger. He had a well child check up while Jerry was in the hospital a couple of weeks ago and Stephens doctor took the time to get a graph out and show Stephen a liver and point to where it is in his tummy. Stephen stays very interested in everything... even to the point yesterday while doing a quick little ER visit for lab tests Stephen insisted on seeing how the whole "pee in a cup and leave it in the little door" thing works. Jerry rolled his eyes but let Stephen come along and see. LOL!!!

How am I?
Not as emotionally wrung out as I was a couple of weeks ago. I still feel the weight of the world on my shoulders, but just knowing they are working on Jerry is such a HUGE load off. My biggest worry is money. How a family is supposed to survive with a very small income from fabric sales (August is and always has been the slowest month of the year by the way ), and still pay insurance premiums and meds and co pays..wow it is a lot to figure out. But if I know how to do anything its sell stuff. My stash and putting sales on in the shop are going to be what gets us by and God will take care of the rest.

You call could help! Spread the word!!

I sell ALL my fabric (including my awesome amount of destash stuff, new fabric etc) here :

https://www.facebook.com/groups/Ozarkfabric/

And all my patterns, notions and paper pieces here:

http://hillbillyquiltshop.com/

Wednesday, August 13, 2014

And now is when I get all human on myself...

Today.. we had to make a decision to keep Jerry home. Its not an easy one..I'll get to that in a minute.

First I will say that after arm twisting, Jerry has an appointment in two weeks at the liver center. They said "to be aware that we will be discussing all the treatment options". Not really sure what that means since we have already discussed the expensive one. But, of course, that statement wasn't necessary as we had no intention of leaving that appointment without discussing them. We consider the appointment a victory because yesterday morning the treatment center had said not to come in until mid October. After telling them that is not acceptible I guess they finally decided to read Jerry's charts from the hospital and bumped it up considerably.

We really like Jerry's KU team.. except the transplant (liver) treatment center. He's just a number for them. For example, his gastro doc's office was scheduling a post hospital evaluation before we left the parking garage when Jerry got released. This is typical of KU..except, um, the place that we need the most attention from at this time.

Anyway, that's that and we sit until the end of August.

SO.. Jerry can not work. Which leaves us in a bit of a pickle. He did go talk to his personnel dept today and it seems we can try for shared work leave next month. (too late for this month. sigh. ) He is not eligible for any disability for work until he misses 90 days.

So.. it seems we just squeeze by until.. ummm. (Here is where I am getting all HUMAN).. I have NO idea how we are going to get by. Now, of course, I will leave it up to God. I mean..I have no choice but to do that. Thank goodness because that is the best place to leave it. But.. I am a woman. And I like to worry. And even Jerry is concerned about a few things. Here are the concerns that have me a bit on the agitated side tonight which will cause me to pull away from work (the facebook always communicating part)  and pretty much want to be alone to come to terms with how to handle it. You will also hear my fussy come out in the following words because I am agitated (and human). I think after I post this I need to go hide. Since I always have a little bug attached to my side maybe he and I will go on a evening hike to get mom's worries and agitations all hiked away. Well anyway, here are the I have no ideas but it is what it is...

1) We have to pay insurance for Jerry out of pocket. With less income. Someone asked me if ObamaCare kicked in or came into play here. Nope. I applied for it (because it was the law) and I am exempt from paying for it because we are too low income. And that was before we lost Jerry's income. So, I will remain without any insurance and we will pay Jerry's, and God has that all figured out how because I sure don't.

2) Jerry has to pay child support for his two parently kidnapped kids. Most of you know the story, not going there right now for those that don't . There are some old blog posts around here somewhere if you dig hard enough. Point is..Jerry is concerned that he will go to prison for not paying the child support. I was in shock. I asked him, " How in the world can they put an old sick man in prison when he's too sick to work? "
His reply..they do it all the time. He works in a prison. He sees it all of the time.

3) We are considering me getting a part time job to make ends meet a wee bit more. I could work the weekends while Amy watches Stephen. I could also work a few hours in the mornings. I know most of you will say this is impossible with trying to juggle Ozark as well, but sometimes in the midst of strife we achieve the impossible thanks to strength that is not our own. I don't know. We will have to have a family meeting about this topic in the next couple of days.

In the meantime my teenager is driving me crazy because he does not seem to understand the concept of "leave me alone". You would think after all these years he would 'get it' when mom is stressing it is best to just give me space.
Ha! he is standing over my shoulder and will read this. Wave hi to him.

Ps I owe emails back to a couple of you. I tend to save the longer ones when I want to send a nice long reply until I have a moment alone to send a nice long reply. Coming soon, promise!!

Friday, August 8, 2014

Coming to terms, and how I deal with it. a.k.a. "Answers"

*this blog has become my personal blog. If you wish to read about fabric or quilting please find me at HillbillyQuiltShop.blogspot.com *

For many of you reading this, you have only just met me thanks to Ozark fabric or Ahhhhs. Yet for many of you, you knew me well before those two things existed. Before life revolved around Jerry's health.

The time line (bear with me..you need to read this even if you know..it explains things) :

Four years ago Jerry had a stroke. It was fairly large but a blessing in that the portion of the brain that it was contained in didn't affect his daily life other than he was slower to respond mentally than before and, as with any stroke patient, had some fussy issues that went away after time.

Two years ago Jerry was sick. Really sick. He was literally dying in front of my eyes and no one knew why. I begged that they find something. We took him to the ER 9 times over a three month period! He had a gall bladder removed for no reason. He had stroke after stroke. He had internal bleeding. The doctor gave me not much hope..oh look..another stroke. Then, in one day, it all was figured out. Took 3 months..but it was figured out. 

Not over night, but soon all was o.k. Not perfect, but o.k.

       Most of you remember this. Most of you are tired of hearing of it. But ... can you imagine being me and living that.. having it finally behind you and just two short years later..living it all over again?! 

The strain of the last two years has nearly broken the hillbilly (me). I said nearly. Without Christ..I think it would have. Because I've been on the brink a few times and then had to remind myself where to put my faith.

The last three months have been the largest test. I have been a wreck of emotions. The repeat of unknowns again. The watching my husband deteriorate. Again. The having no one listen. Again. Going to ER rooms and doctor offices and coming home empty handed. Again. I thank the Lord that Jerry hasn't had strokes this time. I think that would have been my final straw. I think I just could not have handled that.

But I will say my wreck of emotions has been more fragile than it was two years ago. I attribute that to a few things.
1) Facing it. Again. (have I said... Again?)
2) Spending more time with work and less time with God. I need to fix this. God has to help me. I see the $$ and the bills and the loss of pay with each missed work day.
3)Hormones. I am 45. With a 4 year old kid. And tired. Where's that chocolate bar?

But today...as of just a few hours ago.. I feel FREE. I do, seriously! Did we get some great news about Jerry? Nope. In fact, we were both in tears this morning. But we got news. That is what I needed. NEWS. They found it. I can take all that worry from the last three months and just place it in someone elses hands. Now I don't mean spiritually here. I have always placed things in God's hands. But I still had to do the work of making my stubborn husband and the equally frustrating health care system LISTEN to me. Now that I don't have to prove anything, do you realize what a load of burden that is off my shoulders? I think my husband didn't know how to take my feeling of happiness this evening.

Why? well, his prognosis isn't great. Not grim. But not great. It's that liver. Only it's not just the Hep C as we thought. He also has cirrhosis of the liver...caused from a combo of the hep c, the chrons drugs that attack the liver, and his severe diabetes. This morning one doctor said he will eventually need a transplant.

Now I ask you... how would you take that? Remember..this is a man that likes to have multiple strokes when off blood thinners. This is a man with so many other diseases attacking his body. This is a man that has already been through so much. Is it worth it? Would he even want to try? We. Just. Didn't. Know. It was a tough morning.

But then this afternoon Mr. Liver doc man walked in and told us that they are going to continue with the plan of trying to get approved for Hep C treatments and these treatments can actually help the cirrhosis . His prognosis isn't as good as it was just last week. He might still need a transplant someday. But no one knows. And no one will know until we see how Jerry responds to treatments.

Now: the SCARY part (s):
1) Jerry's health has declined even this week while in the hospital; his eyes being the tell tale sign. They've gone from being a very mild yellow at times that only his wife noticed to being a nice yellow color that is obvious. In 4 days. That is scary.
2) The treatment originally had a two month waiting list. Will he get bumped up? How much will he decline during this wait? How much more can his body take?
3) He has to work. This pill is $1000 a day for 12 weeks. He needs that insurance. Has to happen.
4) The insurance company still has to approve it.
5) It might not work. Jerry has a LOT going on inside that body of his...
6) What about Chrons? If his chrons meds attack his liver..well, what then?

These things we cannot know. But this I do know. I don't have to fret over them. They are out of my control completely now. I can raise them up to One that knows best. We can live, and breathe and watch and wait. Be patient and see how God works through it.

Of course, with all that has happened over the last four years, Jerry and I have talked about the what ifs. Me more than him. I told him tonight that we know he won't live forever. I mean.. if he lives to Stephen's adult hood that will be a Miracle for all to behold! But Jerry has been given a gift that many men do not get. He has the ability to plan and settle things for his family. And if he pulls through the next 15 years... Wonderful! If he doesn't..then we are not caught off guard.

We have put a stop on our attempted purchase of the house around the corner. The deal was almost in our hand! We almost had a real live home with a real live yard for Stephen to play in and a real live warehouse for the business. But I am calling the banker tomorrow and telling him that, nope, it's not meant to be. We need to just see how this plays out. We need to wait... and watch..
----------------------

Monday when Jerry went into the hospital, when I picked Stephen up from his sister's house, I sat him on my lap and told him that his daddy was in the hospital. Stephen, bless his sweet spirit, laid his head on my shoulder with a couple of very quiet sobs and said, "my daddy would be sick forever." I did not promise him otherwise. I just comforted.

Tonight Stephen had a meltdown when leaving the hospital. He just could not get over leaving his daddy there. So, I had to sit him on my lap and say, "Stephen... your daddy WILL be sick forever. But also, Stephen, God created you very very special. He made you STRONG. You have a daddy that needs you to care for him. Other little boys don't have to care for their sick daddies but you do. And that means God trusts you to do that. Its a big job but He knew you could handle it so that is why God gave you your daddy that needs extra special care."

Stephen is whimpering in his sleep. It breaks my heart. Rest easier my son. I am bringing your daddy home to you tomorrow. Yellow eyes and all. We will wait this out..together.

Wednesday, August 6, 2014

Feels like home!

** REMEMBER this is now my PERSONAL blog. Quilt and website stuff can be found over at
HillbillyQuiltShop.blogspot.com **

Guess what? Monday we decided to make things like old times and visit Libery Hospital. The ER is so nice there. It's like Jerry is flagged in the computer or something because they just always scoot him right past triage and into a room, with a mound of people hooking him up to machines and such before you can blink. The doctor agreed with what I had been wanting for two months...Jerry needs to be in the hospital. What he didn't agree with..is the whole Liberty Hospital thing. They scooted him out the door, and transported him to KU. figures.

Now don't get me wrong, with the exception of the ER I like KU. Well I dont like paying for parking everyday. And the gas to get there. And the drive through downtown Kansas City. But it is what it is.

Jerry will be in the hospital most of the week I think. Initial findings are that for sure his liver is causing issues but that is not the problem in its entirety. Now they are trying to find just what that problem is. Because he is weak and because they know his liver is causing some problems it sounds like they might cancel the biopsy. It's an unnecessary risk when they already know it has issues. If they cancel he can get back on blood thinners which will reduce stress on his bride. Sounds like a plan.

Today the cardiology team is being called in to see if they can find the problem. He'll have his arteries and such checked.

I am taking a certain little boy to see his daddy today. Something sad happened in Stephen's life yesterday. He started pronouncing "th" as opposed to "f" in place of "th". Sigh. My baby is growing up. I liked "Darf Vader" and other such cuteisms.

Speaking of a cute little boy, he has woken up. Not really a good thing as I was supposed to get shipping done this morning. I didn't stay up last night like I should have. Kicking myself the minute I heard little pitter patters above me.

I'll update the next time I know anything.

Monday, July 28, 2014

A day away

Yesterday I grabbed up my little guy and we took a day away from all the mess of sickness and work. We just had a fun day. Him and I. Do you know that 4 year old boys make awesome date partners?

I am going to let him tell you all about it later today. He is sleeping in way later than normal. I guess our day wore him out. Dont miss his story later over at The Adventures of Stephen blog.

Friday, July 25, 2014

Ain't no shame in it

I finally figured out how to get the personal stuff concerning my husband that wonderful people all around the world are waiting to hear away from my business blog.

This will now be my personal blog and

HillbillyQuiltShop.blogspot.com

will be all business. Yay! (it took me long enough to come up with that smart thinking, huh? ) So if you want quilt designs and stuff...Go there! if you want to hear about Jerry or other life matters, come here :)

Now that being said, I have a bunch of people waiting to hear what is going on with Jerry so this is the easiest way to get the word out and thank everyone who has supported us in prayer and those that have shopped over at Ozark Fabric on facebook patiently waiting when I am slow to ship due to not being able to work, etc.

For those that don't know, Jerry has been feeling very sick again. I mean to the point of lots of missed work and tons of worry on his wife. (that would be me -- the worry wort). We've been going to doctors and getting tests. Today we found out what is PROBABLY the case. (Wont know for sure until we get a biopsy on his liver in the next couple of weeks. )

Background: in 2001 Jerry had colon cancer. During this time he had blood transfusions and contracted Hep C. Now Hep C is always one of those things that people shush shush don't talk about but, seriously, where's the shame in getting a blood transfusion?? So fast forward to today...

For the last two years Jerry has been on medication for his Chron's which affect the liver and can aggravate Hep C. Well guess what? yep. Its all aggravated. His ultrasound showed his liver and his spleen are enlarged.

Jerry's symptoms match liver disease symptoms:

Extreme fatigue
itchy skin but not dry
confusion
and some TMI we wont mention.

Couple this with all his other problems from Chrons and thyroid disease..well no wonder he has been very very sick. His Chron's is flaring a bit but they can't treat it due to his liver.

So... the next steps.

He gets a biopsy in the next couple of weeks (no date set yet.)
Then after that it actually takes two months to even get the treatment started. There is ...get this... a waiting list! And they also have to have time to fight the insurance company. One of the two pills that he will be taking every day for 12 weeks cost $1000 a pill. So...the insurance companies don't like that at all.

Once he finally gets to start he will be treated for 12 weeks. Success rate is 93% that after treatment his Hep C will be cured.

When mentioning the fact that he misses TONS of work with all his health issues and asking if we should consider disability..the answer was NO WAY if he wants this pill. So... for the next say 5 months he has to go to work a sick man and life will be tough for the hillbilly home because the rest of the time..he sticks to bed.

But..there is hope that there is an end in sight for at least this health issue. So he can focus on all the other ones.

Understanding, of course, we don't know a total for sure about any of this until he gets his biopsy.

Hillbilly (that's me) is happy to have answers. I was so scared about his liver. You always hear when it goes..well then you know. And we didn't know if he could be treated due to his other stuff. But he can so.. RELIEF!!!!!!!!!

Thank you my friends. You've supported us well.

Monday, February 3, 2014