Sunday, November 25, 2012

Our New Normal

There is a new television show called "The New Normal" or something along those lines. I don't watch a lot of tv, but I've heard it advertised somewhere along the way during Jerry's football shows or something. I don't think I'd like the show, but I was thinking just now of our new normal. Certain things have become everyday life to us that would cause most to have phone in hand and dialing 911.

Particularly strokes. We have no idea how many small mini strokes Jerry has had. But we do know when he's had medium size ones. Are there such a thing as medium size strokes? I don't know...but to us..they are our new normal. Like the last couple of days, Jerry has acted a bit strange, and then, just like always when he has a stroke, he fell asleep and was WAY out of it. Hard to wake up out of it. This is not his new normal because steroids keep him from sleeping. So I knew he'd had another. Tonight I casually asked him if he'd lost more use of his arm--just part of our new normal conversation. Before bed a bit ago, Jerry stated, "You know, I feel weird. I think I had another stroke". To which I replied, "Yes, you did. Yesterday. That's why I asked you about your arm". Just a conversation in our living room before bed--our new normal.

Jerry tried to go to work for 1/2 a day last week and won't be going back until he visits the doc on Tuesday. He's using so much insulin(due to steroids) that he ran out and when we went to get more tonight the pharmacy refused. We are going to have to call the doc about that tomorrow because his blood sugar was so high it was off the meter tonight. Ya, I'm worried. He's been very diligent with it; even though it is very frustrating to keep it down with the steroids hiking it up. On a good note, it looks like the internal bleeding has stopped. He might possibly get to go on blood thinners this week!!!!

How is Jerry? He tries to do some normal things, but wears out so easily. He insisted on fixing Thanksgiving dinner, bless his heart. He's always done that and this year was not going to be different. Oh, and last weekend his mother and aunt and uncle came to town. It was a wonderful visit. I really enjoyed them, and Stephen got to see his grandmother. One more Jerry note--he has trouble typing now with his left hand and can no longer play least for now. In time, all in time.

How am I? Oh a world of emotions. Elated to have the bleeding stop so that we can maybe get the strokes under control. Worried because I see these strokes happening. Weary because I work so many late night hours. Guilt ridden because I have so many friends I've dropped the ball on and so many people I really need to thank, and blogs that I really need to write (ahhhhs) and read. Saddened when people stop communicating, because our new normal..has just become.... normal. You know what I mean by that? Yet I am so thankful for those of you that haven't given up on me, you check in on me, some of you have gifted us Walmart cards (which we save for meds) and you understand that every spare computer moment I have is usually spent in that crazy fun Ozark Fabric shop. I have something fun going on behind the scenes with ahhhs but I am frustrated that I cannot get the time to get the ball rolling on my end. And sometimes, I just wanna be a girl and cry. Through it all, I am ever thankful for my faith in Christ. How one ever lives without Him, I'll never know.

How is Seth? Fifteen years old now! Mercy.

How is Stephen? He taken to not allowing anyone near him but me. Not even his Sissy who he usually adores. She tried to have him spend the night with her last night and spend the day with her today, but he just cried and cried for me. So, I had to go back and get him and never got a lick of work done. He seems mommy needy right now, so he gets lots of attention. I actually am attempting to get a teenage girl to watch him for a few hours a week. I really really need a break. Not sure how that is going to work, and I don't like spending the money on it; but I just am too tired to continue as I am doing, something has got to change. I just hope the stress of a sitter won't be too hard on Stephen.

So, there you have it. Our new normal. When "oh you had another stroke" is our evening conversation.
But I have my husband still with us, so I am counting my blessings!

Wednesday, November 14, 2012

The tunnel of Doom and other spins and turns

My friends, here's a crazy one for you. Jerry is home.

I am going to describe a few things that happened this weekend; just so you can enjoy a bit of this coaster ride, you know? (I used to love coasters, I think I am very tired of riding them now.)

Friday--Jerry goes in for stroke and needs blood transfusion--2 bags.

Saturday--Neurologist comes in to warn us that he could have another stroke any time. Informs us that he read the MRI and that Jerry's had multiple strokes since his last MRI a couple of weeks ago. Says there is not a thing anyone could do. I ask him chanced of Jerry having a massive stroke and he said very very high chance.

Sunday-- (I think we should call this the Day of Doom Tunnel or something.) Upon my arrival I note that Jerry has had another stroke, although only I can tell yet. As the day progresses his nurse notices the signs. Calls the neurologist--nothing he can do just let him go. * Weekend on call practitioner shows up--wants to schedule surgery to remove Jerry's colon asap. He wants to get the bleeding stopped, then Jerry can get on blood thinners to stop strokes. Doctor is very concerned; was blunt that a massive stroke could happen anytime. * Weekend GI doc comes in. Says there is no way Jerry can have surgery. The bleeding is up high, coming from esophagus. There is nothing anyone can do but let it heal on its own. The sores are too massive to cauterize. * Jerry's lost so much blood in two days he has to have 2 more transfusions. * After docs leave, we cry some tears, make some plans. I call Jerry's family, Jerry works on writing letters and telling me who gets what of his possessions.

Monday--wait all day, never see a single doc until evening. GI doc (different one from the group) comes and and washes his hands of Jerry because he is too complex of a case. Says he's transferring Jerry back to KU. (we would have gone there first if we weren't coming in for the stroke. We really like the neurologist at Liberty...alot..and that is all we thought we were dealing with this go around) * Not ten minutes later Jerry's regular practitioner comes in. He says, no he's not transferring Jerry to KU, in fact hes sending him home on Tuesday if Jerry's hemoglobin count is good.

Tuesday--Jerry sees some therapists for his left arm due to a small loss of movement. Never sees another doc until after 5. Doc comes in and says hes sending Jerry home right then. And get this..doc says Jerry CAN return to work. (insert very frustrating ugh.)

Wednesday (today) Jerry has to return to hospital for lab work to watch his hemoglobin and will return every 48 hours for a time. Especially after they decide that he can go on blood thinners.


An observation: If Jerry had not had woken with the stroke on Friday, I am not sure how things would have progressed. It has been very typical through this entire process for me to just let him sleep hours on end. If he would have just laid down and gone to sleep...I would have just let him sleep and sleep. We are thankful for the stroke because then we found out about his bleeding so badly. We have agreed from this point forward that I wake him after 8-10 hours or so and check on him to make sure he's not had a bad stroke. The hospital will be monitoring his bleeding thankfully.


In the midst of all this there has been some behind the scenes drama that we did not need. I think some might say that I was over dramatic about it all...especially since my husband is resting peacefully upstairs in his own bed right now.

That could all change tomorrow. He could heal, he could have a stroke. Only ONE knows the answer to that.

Sunday, November 11, 2012

The most daring ride ever...

Of course my hillbilly self cannot help but think about the new ride at  Silver Dollar City, when I think about what is going on in my life right now. It boasts of being "the Most Daring wooden roller coaster" ever made. There is one loopy loop that it does that I feel like I can so relate to. I'll post the video at the bottom so you can see what I am talking about..

So what am I gibbering about anyway? Roller coasters. That's what. Jerry is back in the hospital...

 He had to be taken there by ambulance yesterday(Friday) as he was having mild stroke symptoms.(His left arm is numb) Upon arrival of course they do lots of blood work and tests. His hemoglobin count was at 6.2 (normal is around 14). So first priority was blood transfusion--two bags full--which they drip slow. That process took over 6 hours. They really wanted to fit an MRI of his brain in between bags of blood but communication wires got crossed, so the MRI didn't happen until today. Due to Jerry's current situation three different doctors were basically pacing waiting on the results. But of course, MRI was super busy today and the results never came until later this afternoon(I ones heard a thing yet) when everybody finally got tired of waiting and left.

Why is that result so important? Jerry is in really between a rock and a hard place. He has so many internal sores which is causing him to be anemic and causing him to need the blood; and also makes it so that he cannot even be on blood thinners. (even aspirin now)

What happens when Jerry is not on blood thinners? He is at a very very high risk for strokes.

So, where does that leave us? Well, hows this..the neurologist looked me right in the eye today and said, "The next two weeks are critical. Until the bleeding gets under control there is nothing I can do. You are at very high risk for more strokes; including a massive one, and there is nothing any of us can do to prevent it."
{{prayer--that's the best anyone can do anyway!}}

So, want to climb on the roller coaster with me? I think I'd rather just step off the one that I'm now, and try a new this one:

Monday, November 5, 2012

It's high time, I know!

I have had emails and messages asking for Jerry updates. It is all so hard. With income at ZERO right now I have been working working working at selling fabric. There have been major changes made there so maybe things won't be so hard and time consuming in that area from now on. Anyway, about Jerry...

Last time I posted the hospital he was in finally gave him a colonoscopy. Well, they found lots of infection, swelling, etc., but thankfully no colon cancer! After trying to give him meds, he continued to worsen. Internal bleeding was added to his list of diabetes problems, heart A fib problems which they think are causing his strokes...he was truly a mess.

FINALLY the doctors admitted they couldn't find the answer. So he left this hospital:

And they transferred him to this hospital:

I think Jerry thought he got taken to a 5 star hotel. Room service food delivered whenever you want. Good food. LOL, when they tried to put him on an all liquid diet he threw a fit! He arrived here on a week ago Friday, and they just let him rest for the weekend. His internal bleeding did worsen as time went though.

On Monday (a week ago today) they ran tests on him. And by afternoon; they had an answer. 
Did you hear me...IN ONE DAY! (after 9 weeks at the other hospital and thousands and thousands of dollars of tests.)

He has....

This is what threw his body into DKA. What made him sick and lose weight (40+ pounds). What zapped his energy (well 3 strokes did that too). 

They kept him in this latest hospital for a week to monitor him, and all his meds. He is home now. 
He feels and acts so much better but he has a long healing process ahead of him. And his meds are really messing with his blood sugar. This is so scary because even with LOTS of insulin and eating right, the meds are keeping his sugar from 250-350. This can cause more strokes. 

It's a vicious cycle. He's going to attempt to go to work tomorrow. Financially it is quite necessary, but oh man, you KNOW I am going to worry.


Some stats for you: 10 weeks plus however many days on this one off work. Personal time ran out several weeks ago.
Hospital stays: 5 (I don't remember how many days each) Two different hospitals
ER visits: 5 (two different hospitals)
Total hospitals involved: 3
Ambulance trips: 2 from two different towns.
MRI's: I can count at least 6..but there were probably more
Surgery: 1
CT scans: umm more than 10
Ultrasounds: around 5
Xrays: 5-7
Blood tests: ha, impossible to count.
Medical bills total: I am not looking yet. I haven't even opened them. 


How am I doing? Happy to have Jerry home but am ready for it all to end. Running a home based business as a single mom is WAY harder than working as a single mom. I know. I've done both now. Today I am just fussy because I am so dog gone busy!!!!

How is Stephen? He has taken to stuttering..and it is progressively getting worse. I am not going to rush to some doctor so he can get rushed to some speech therapist so that we'll have to go into the parents as teachers program. Not my thing. He's not even three yet. If it worsens, and AFTER life calms down, I'll consider talking to his doctor. But NOT right now. No way.

Seth? ahh, he's almost 15. Not much more to say about that :)

Thank you all for your prayers and concern. Things are looking up. Way up. And blessings abound. Many many blessings.