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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

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 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.


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 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!


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...


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 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!


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 day at a time.


barbara woods said...


Tami C said...

Thank you for the update Tonya. I'm so sorry that Jerry had to go back to the hospital again. At least you ran into the helpful ER tech that told you how to go about ordering an ambulance without all the problems you had this last time. I'll be praying for you and yours. HUGS

Marjorie's Busy Corner said...

Hohhot, I feel so very bad for you guys. this is not a nice way to spend any amount of time. I hope things get better for you both.

beaquilter said...

what a mess, sounds like you have a solution to most of the things though, so that's good....
Hey, who are the 2 fellow DANES in the group?? just curious

Grammasheri said...

You were on my mind and I appreciate the update Tonya. Praying for Jerrys health to improve. Praying that you will receive the help you need ASAP, personally as a caregiver, healthcare-wise in coordinated care and advocacy help, and financially in help with your businesses. Also praying for an answer to Stephens schooling.

Pat said...

My heart goes out to you, Tonya. You're coping with so much, I hope somehow you get to move, get Stephen in the school just to give you a bit of a break. Keeping Jerry in prayer for his health is a given xx

QuiltSue said...

You've got a lot to cope with, but at least it does sound as though there are some helpful people around who are able to guide you through some of the practicalities of getting the help you need.

Quilterhilly said...

Just came across your blog and wanted to send you greetings and courage! It sounds as if you are all having a really tough time at the moment. This post is to let you know that you are being read and that good vibes/prayers are winging their way to you.

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