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

Sunday, January 18, 2015

And the year begins...

Jerry did so well over Christmas! But as the near year got closer his health declined again. Then he just down right got SICK.

He just spent a week in the hospital again, then came home and was back two days later to spend a day in the ER. ( That was yesterday all day.) Since the new year Jerry has been REALLY sick..like he was two years ago. The scary kind of sick when they watch him for strokes or a heart attack.

Stepping back a bit I do need to clarify that Jerry is no longer on the transplant list. They deferred him until later when his health improved, then they would re evaluate his being on the list. The surgeon even back in November during the evaluation told Jerry that its time to focus on quality of life not quantity and maybe, just maybe with improvements in quality they could work on quantity.

So, they started the new Hep C miracle drug that cost a major fortune but is getting all kinds of rave reviews and everyone is doing great on.

Then...there is Jerry.

He's been vomiting constantly. He's been getting weaker and weaker. He battles severe dehydration (thus the reason for our ER visit yesterday).  His hemoglobin is dropping. He's had two blood transfusions this past week...not for bleeding. Its because of how the drug is interacting with his bone marrow. He'll need another this week we are all sure, but thankfully his hemoglobin is dropping more slowly than it did last week when he needed the transfusions every 48 hours.

So... here is what they are doing for now to see if it works. His liver treatment they cut in half. It has helped the nausea a LOT. He's not vomiting daily anymore. His hemoglobin is still well below normal and is dropping, but not at the pace it was before.

Theyve ordered home health. He has a nurse that comes twice a week to check vitals and draw blood. Its so nice not to have to drive in to KU for labs, I'll tell you that!

He has a physical therapist but not sure what's going to happen with that. Jerry has been sitting for so long his body has deteriorated but the therapist told us there is nothing he can do until Jerry's hemoglobin gets above an 8.8. Um...haven't even seen that since they started tracking it again!
There is also an occupational therapist starting tomorrow.

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I am getting FUSSY. I am struggling maintaining my sanity at the moment. I had to fight with Jerry to get him to go to the ER a couple of weeks ago. I mean it was a huge fight, yet once he got there he was so dehydrated they couldn't find any veins and he needed a weeks long stay and two transfusions. Sigh. I am so so so tired of fighting him to get what he needs to survive. I have for FOUR YEARS. That was the first stroke...the first fight. It took4 days to get him to the hospital for that one. And the fighting never has stopped.( I mean medical fights..otherwise we love each other dearly and get along great and I protect him like a hawk or something..I just have to fight with him medically far too much! )  I am just weary of it. He reads this blog..and I am at a point I don't care because I need the world to know why I get fussy. I am just stressed to the point that I cannot be stressed anymore. I am really glad home health is now in place and can call the shots instead of me now. That will help. Like yesterday...

Then there was yesterday. The therapist felt Jerry needed right back at the hospital, and worried about me tryingto get him into KU. (they dont come out to help at KU..you are on your own). So we called an ambulance. Then yet another battle. The fight about him NOT going to Cameron. They refused, argued, were absolutely JERKS about it. Well I shouldnt make it plural. The man was nice; his female partner is getting reported Monday. She would not listen and I finally told her to get Jerry unloaded off the stretcher and get out of my house and I'll never call them again. Its true. I won't. I know there are laws in place BUT she needs to not be a you know what and LISTEN TO ME. I was assured there would not be a problem in the future of taking Jerry clear to KU. whatever.

Then.. we got to KU. Just me and jerry. I call the ER and ask them to please send a tech out to help. Some lady from the desk comes out and says, we don't do this but I'll help you. great. whatever.

Then KU is a teaching hospital...remember that. Most of the time we don't mind. But some resident doc comes in and tries to do this that and the other to Jerry. I hit the roof at the rectal exam and didn't allow it. I told him READ THE CHARTS HES NOT BLEEDING!! Finally the ER doc came in and agreed... after reading the charts. But it was just the run around of unneeded test after test. To get some bags of fluid and to be sent home. What. A. Day.

There was a blessing in the midst of that mess yesterday. Two in fact. Three actually. Men. I cannot believe I am saying that! (just kidding). The male EMT was beyond nice in trying to make up for his quite the opposite partner. (By the way, she is the same one I had a fight with a couple of years ago when jerry had a stroke and she swore he didn't. He lost hand movement on that stroke.At the time we were dealing with Liberty and she refused to take him to Liberty. )  The male Home therapist that saw my point that my husband is sick and no way he can do physical therapy, and agreed with me that Jerry needs in the hospital, even if the hospital didn't agree was blessing 2. Then blessing number 3 was an ER tech. He does rescue copter work during the week and ER on the weekend. He was the most helpful of all, telling me how to deal with the ambulance and that home health has to initiate and make the call to NON emergency and request a transport to KU. This way its a transport from one system to another and there is not a thing the ambulance crew can do about that. They will be forced to go to KU. He also told me to move out of Cameron. Said he's been working the skies for 20 years and I need to get to a better community with better service. Cameron is not known for it. At all. (don't I know it??!!) Then he said I need to call social services at the hospital Monday and get some action. Ask them how this is supposed to work...when I can't work. How am I supposed to care for myself when I am so wrapped up in Jerry. Tell them that they need to figure out how to make this work so I am not having to run to the hospital weekly or at least get aide for all my missed work. I might work from home but all that means is I dont get sick leave or paid vacation time!

So, I am ready to knock some heads together but in order to fix that I am going to try to get Jerry outside today for a Sunday drive at least. I think we both need it and its supposed to be 60 degrees today. We may not be able to get out of the car and walk a trail but just getting away from everything and driving would be nice. I was hoping to leave already but I went to wake him and it didn't happen. He didn't even hear me at all.So I'll give it a couple more hours then attempt to get him up and around. I need it! We need it!

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Stephen is doing ok. He gets shuffled too much. I have asked the advice of several people concerning his schooling next year. I cannot believe I am saying this but I just don't think I want to home school him. But I REFUSE to put that sweet boy into a public school with its stupid common core curriculum and the fact that they will not be understanding of him missing lots and lots of days due to his father. Therefore I talked to a very small private school and explained the whole situation. I am waiting on me (when???!!!!) to get my taxes in order and done so that I can apply for financial aid. I pray we can afford it because I really do think this is the best for Stephen. We would move south about 25 miles or so. This would put us very near the school, our church, very near Amy and that much closer to KU which would be awesome! I just need to get some money together for said move. Which means I would need to work harder..and um..I've not opened my shop in a week and a half. There's the cycle of insanity again...

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Anyway, not to be all negative we see lots of blessings as well. My shop might not be open but the website version gets hits from all over the world and I am selling things on there I would have not thought to carry before I had a shop. I just sent two big packages to Denmark and I have a large order in the works from France, another went to Tasmania. And of course the states! Just when I am most in the dumps (this week) and worried about shutting the brick shop..should I or shouldn't I.. God sends someone along. I got a phone call Friday from someone asking me if I could meet up there..and they spent $250.  I got a phone call Saturday asking me if I was opening..um no couldn't do it. She says, "Honey its no big deal, You know I drive from Kansas to come see you and we love you and understand.. you just hang in there". And there you have it. I can't close the store. I don't think God wants me to even though its rarely open!

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Well this has been a long post but it gets you up to speed about everything. I don't know what the next few weeks will bring but we'll just take it one day at a time..one day at a time.







Friday, January 2, 2015

A year in Review: NO WAY!

So many use their blogs at this time of year to post their accomplishments for the last year, their missed goals and their goals for the new year to come.

Not us at the Owens home.

OH by the way, if you are reading this and you are hoping its about quilting..then best head on over to HillbillyQuiltShop.blogspot.com. I'll be over there shortly to blog what has been going on in the Hillbilly World. This blog is all about the Owens homestead..especially about my husband who keeps trying to find new ways to kick the bucket but I don't let him.

Yes, I can joke about that! Why? because if I didn't have humor, my goodness, what a mess I'd be. I mean, there are many times over the last, say 4 years since Jerry had that very first stroke that I've been a mess. A real mess. And over all that time, I thought two years ago would have been the most trying on me, both physically and emotionally but nope. This past year certainly topped it! But, this year we also saw so many blessings. Through trials in life, that is when we really see and feel the blessings and the Hand of God, so while it is really hard for me to say, Thank you Lord for those trials, hindsite, I actually can!

Now..enough jibber jabber. Here's the latest news:

Jerry has been on his expensive treatment for a month. The liver will never be healed. Someday he will need a transplant. The doctors are hoping the pills push it down the road a few years. No one knows. They've never had a case quite like Jerry since this is a brand new medication, so everyone is just waiting and watching.

Jerry is getting up and moving around more. His mind is more clear and he is no longer yellow. He does have very frequent nausea and his gut continues to be enlarged. We have to be careful of leg swelling as well. He is still not able to walk distance, he coughs and chokes all of the time.

He has to go in and have his arteries checked that run between his heart and his liver. They fear blockage and need to see how bad it is. I don't know when this procedure will be, they had one scheduled for during that short time span when he had no insurance, so he couldn't have it done.

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I am doing much better. My little store allows me quiet time to actually get work done. Lots of work done. Even if customers never come in it is so nice having office time without guilt..because at home it just doesn't work that way. I am not all on edge anymore, and we've settled into a routine. I like routine.

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Stephen is a goof ball and still our angel. He just turned 5 and his greatest desire on any given day is to go spend the night with his sister.

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Seth is 17 and driving and not chasing girls. He's a homebody.

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Amy will be 25 soon and maybe will have wedding bells this year. Who knows?  She has two dogs that are her babies, but she keeps Stephen at her house once a week so I can work a long 15 hour day of cutting fabric for filling orders.

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To my friends; I am sorry I once again did not send out Christmas cards or wishes. During the last two weeks I took a LOT of downtime away from media. I just wanted to be with my family. I am sure you can understand why. We didn't do a lot out of the ordinary, but yesterday on New Years I had some time alone on an outing with all three of my children and we had a great time. We went and played laser tag, as well as went thru a mirror maze. It was nice just pushing worries aside and having fun. I am trying to find more time with Amy, because we have settled into a routine of her just watching Stephen and never having mom time. So, while we do drag Stephen along with us, we try to find time to go shopping. We went to Ikea. Not sure I want to do that again..she had us there for FOUR HOURS! lol!!!

I hope over the next year to blog nothing but good news about Jerry, but I remain ready: come what may.