Thursday, February 27, 2020

Weary

Day 27 and weariness is settling in for everyone, especially Jimi. I went in Tuesday, did my usual stop at the nurses station to the news that his blood was up and thought that perhaps his system had finally kicked in, helping to rebuild the blood. And it might have.  I walked in the room and was quite surprised by his crazy heart rate  bouncing around all over and way too high for someone who needs a slow heart rate to help stop the bleeding. It has been quite a dance, still requiring IV meds to manage his heart, which drops his blood pressure too low.  He sure is having one tough ol' time.
Prayer my people. Thank you.

Sunday, February 23, 2020

Ground Hog Day Sunday

 The current window on a big part of my world.

So, after going every morning before school, and after school and sometimes in between, I was finally graced by the presence of the Wonderful Wizard of Hospitaldom, the hospitalist, which supposedly runs this show, though this is the fourth one Uncle Jimi has had.
Saturday night I texted-
Returned this evening to give him a bath and the hospitalist very begrudgingly made an appearance to assure me of what I already knew, that Jimi is"stuck between the devil and the deep blue sea."  She said she had informed Jimi of everything he needed to know.
Let me break in here and say that I wished I had asked if her blood level was ever  less than half of normal?  Added to three weeks of no consistent sleep. Added to having dozens of people in and out and surgeons and specialists changing in and out like underwear.  Added to plans literally changing moment by moment. Added to one doctor walking in and saying one thing and another coming right behind saying the exact opposite.  Would you know what was going on?  I highly doubt it.
Back to the text- The portal pressure med that was pulled off apparently loses its efficacy after several days. Cardio doc recanted and increased med to slow heart per GI's suggestion of 50 to 60, as we both look up at the monitor and see that his heart rate is 80. Umm, that doesn't seem to be getting the job done ya think?  Cardio will not pull back on blood thinners till March 6. He has to maintain a 7.5 over three days to be moved to rehab.  I surely hope nothing terrible befalls her or someone else due to the exorbitant amount of time, ten minutes, she spent in here, part of which was to remind me how busy she is and her annoyance with my expectations.  End of text.
I told Jimi this is just what it is and we have to ride it out. It is lousy, but we have no choice.  He's always been a jokester so he needs to up his game to keep us entertained till March 6.
So, his new entertainment is seeing if he can launch his straw paper into my hair when I least expect it.
This morning's text -
Good morning, we are broadcasting live from the Hotel California, where you can check out anytime you like, but you can never leave. And, in keeping with our partners in crime, Pete and Repeat, blood is up slightly after yesterday's transfusion in the detoxifier. Today's nurse is a sweetie.  I was up at Dark Thirty and fixed him gravy and biscuits. It was on our mind due to a gravy fest in Louisville yesterday.  As has ever been true with the myriad of my poor, pitiful, sick people, if I can feed them and they can love it, and they usually do thanks to the Good Lord who saw fit to pass Wandy's penchant and genes for preparing delectables to me, then we have a just right few minutes of all is right with our world, and it is glorious.
I also mentioned that these days just get longer and he really appreciates visits or cards or pictures from our littles.
Between visits yesterday we went to  our sophomore Bean's swimming sectional meet.  He swam against 16 other schools and came in 2nd and 3rd in two events to seniors.  That crazy hair yellow/gold hair and how big it is cracks me up. Interesting to me that he does that to his hair, then marches in with a hood on.












Thanks Ceece and Bugg for the snaps. 

This with Jimi brought back memories, probably ones I've told before, but they always make us smile.
Jimi kept Bean when he was about 18 months old.  Jimi was recovering then from another health crisis and so he kept a rug rolled up under Bean's crib.  He would put him down, unroll the rug and lay down beside him and they napped together.
I took Bean to the zoo and my beloved gorilla was strutting his stuff, putting on a show for us. I guess he got tired and a grabbed an armload of straw and came right to where Bean was at the window and shaped the straw into a bowl and lay down in it.  Bean immediately laid right down beside him on the other side.  I could hardly wait to tell Jimi he'd been mistaken for a gorilla.
Jimi also has long had a bad hip.  Bean developed the same bad hip and every time he had to step up onto something is would groan a little.  I have a step up in this old house and we heard that little groan many times, always warming our hearts.  Have mercy, was there ever a more adored grandchild?  Oh yeah there was, about a dozen of them.
After swimming, we went to a reception to celebrate a new marriage and I got to see old friends and kiddos who spent most every Easter here during there growing up years.
A little bit of fun and normal is nice.
Handy Man has two more interviews this week.  Join me in prayers that this new path becomes clear to him.
And those sisters of mine will both be here this weekend!  Goodness, when you've spent 60 years being the baby, it ain't much fun being the grown-up. I'll gratefully return to my position in the family thank you!

Friday, February 21, 2020

3 Weeks

Another doctor called in, this one specializing in problems with the blood. Lots more tests and a nuclear scan of the abdomen. Still, they are unable to find any reason not already found.  We're now two weeks down with heart stent, so I'm holding to hope that when they can start withdrawing the blood thinners in place for heart healing, Jimi might begin to build his own blood.  We're now up to 16 transfusions. Still a rough road ahead with the dialysis and constant blood monitoring.  With some unfixable gut issues, this won't go away without a miracle, but hopefully can be managed for a time at home.  He really is generally a good patient, but asks about just being allowed to go out and breathe some different air for a minute on the days there's some sunshine. So far he hasn't managed to talk them into it.
Handy Man has had a couple of job offers and still doesn't quite know what he should do.
Me, well, no matter that I have hours upon hours of hospital experience, it just doesn't ever get easier when someone you love is in a hard place. That place of being guilty when you are at work leaving someone to who is rather defenseless, and being guilty when you are at the hospital and leaving your classroom is ever present. And the hospital nonsense that simply never ends is exhausting.
I pray we get some answers to get Uncle Jimi home and I pray Handy Man can feel good about how to go forward.

Monday, February 17, 2020

Wow, Day 17

And Jimi is still bleeding from somewhere.  Another scope in the morning.
I am worried that there is some other underlying complication, and still they refuse to call in a specialist in blood disorders for a consult.  He's had almost three liters of blood.  I just can't.
Handy Man is a bit lost and wandering, wondering, pondering.
I feel a bit lost and undone myself.
Peace and love ya'll.

Thursday, February 13, 2020

The Crazy Life

Oh, where to start?  I went down yesterday morning to do my before work check-in and the nurse said he'd had a good night. At least no falls like the night before, requiring a CT scan. I suppose that started my mind going back to the nightmare that ensued when Kaye hit her head.  But, she added, he was up and down all night going to the bathroom. Huh?  I went into the room and asked Jimi if he'd had a lot to drink and he said no and anyway it just felt that way, nothing happening.  Ummm, UTI! So I headed back to the nurse to say I wanted a urinalysis. She proceeded to give me a big smile along with some startling, ahem, information- "Oh, he had dialysis, and when you have dialysis they take off water ( oh, is that what they are doing) so they might think they have to go, but they don't. "  Well, I didn't get arrested, but I did say, "The dialysis is not new, the frequency is, do the urinalysis."  The nurse coming on said she'd get right on that.  They brought in the bladder scanner and clearly the bladder not emptying.  I came back at 5 and still no specimen, so I ushered Jimi into the restroom and that was taken care of.  This morning I come into to a new bag, an antibiotic, what a surprise.
So they said he had to have another scope and it would be at two today.  So I made arrangements to be there.  Got a call at 8:45 that they were doing it right now, which of course they didn't, but not knowing that had to speedily get coverage for my class and wasn't back until lunch for a ten minute scope. They found nothing else, but plan to try and lower the pressures internally to help staunch the flow. He has now had over 2 liters of blood.
He got to dialysis late, so I ran to the grocery after work, it is so cold, even frozen stuff wouldn't be disturbed and got groceries and some things for Valentine's Day for him to give his boys, or a kind soul and it all came rushing back.  Kaye and Glenda both were in ICU on this same day. I remember taking Glenda a bag of Russel Stover hearts to give to her littles.  It is Kaye and Pete's anniversary too.  I was just too sad.
But, Rae met me there with Gideon and that helped. After everyone left and Jeopardy was over, we got a bath.  Jimi always smelled like Dove soap, so I got some.  It is my first experience with a brother needing the kind of care he does.  I've been surprised that he's let me help as much as he has.
I work hard to protect his dignity. Still, I can't imagine how he feels.  Oh my.
Handy Man is making the rounds, filing for unemployment, and all kinds of jobs.  Not much of any way to feel good about it, but he's doing the best he can.

Sunday, February 9, 2020

Kick in the Teeth

Just as school ended on Friday, I got a text from Handy Man that he had been laid off.  No warning and not an ounce of common decency from the place he poured himself into for over 40 years. Told just  a few minutes before quitting time, walked to his car as if he had committed a crime. No opportunity to even say, "Good bye," to his co-workers.  It is so very hard for me to imagine why anyone thinks such an approach is a good idea.  I would feel better knowing that these gentlemen, who have long known him and his work ethic, will sleep poorly at night and wonder when what goes around comes around to them, but I know there seem to be folks who relish being a complete jerk.
  I hate it for him. He's not ready to retire, so I also hate that he'll go back to low man on the totem pole with a week's vacation.  But, there are worse things, and maybe the Lord has a job more suited to him in store.  I sure hope so.
This care taking job can sure take the stuffing out of you.  Uncle Jimi is still losing blood and they just don't know how or why.  He had an abdominal CT scan today that did not reveal a probable cause. He was back to being disgusted about the whole thing and wanting to go home.  He did better today than he has been eating and I think is getting some sleep in fits and starts.  He's moved to the little couch bed. Oh my. I thought my eighteen days on that last year were miserable, but he seems to find some comfort there.
I went early to take his coffee and see him through the CT scan, then came home to try and pull off our Valentine Playdate.  I didn't get to do what I usually do, but no one seemed to notice.
 When Mr. Smiley came in, Pap was still helping me hang hearts and he said his Pappy was "decoratying."
 When I sent the troops the marching orders for February, I mentioned that they could exchange Valentines and my favorite Valentine was Russel Stover's.
Rae said artisan sourdoughs with cherries trumped candy. True that. It was so good. Jordan left off the bread and brought a box of Schimff's Candies- Sweet.
 Ahh, my happy place, feeding smiling faces round the table.
 The Captain has a new business- seamless gutters, and we received a set for Christmas.  Mr. Smiley is in his glory in a work truck and told me all about how the guttering was done.
 That's Bean on the roof.
 Rae knows a tune is a balm for me. Some old hymns and Ceece jumping in.
Then I fixed supper to take to Jake and Jimi.  Jimi wants to trim his hair and beard, and it needs it, so I moved a chair into the bathroom and got him in there, and the trimmers wouldn't work. I know nothing about hair or beard trimming.
I'm too tired to wonder what next week has in store, for Jimi, for Handy Man, for me.  Would love some prayers that the Lord makes all these crooked places straight.
I also want to get the pictures here of the birthday outing.
I was gifted this book by Gardner E. and was so smitten by its simplicity, yet depth, that I took it along to share. I would love to give every one a copy.
Biscuit Belly was good, but it is crowded and quite a stand in line wait.


 I loved making a terrarium.


Friday, February 7, 2020

Contemplating

I've so loved this blog as it has been such a great calendar of past events. I can't tell you the times someone has asked when something happened and I've said, "I don't know, but I'll find out." Then, another lovely thing, press two or three buttons and you have a blog book.  My grandkids love to look at themselves and I hope they are reminded of my great love of them.
There is a stat page that shows where viewers come from and how many are viewing. Not too many on mine, so I wasn't quite sure why in the early winter I was seeing way more views than ever before.  I clicked on a source and I bet you might can guess what I found.  I have no words for how it sickens me to think my precious little's faces might be used for creepy creeps. I can make it private, but then people now and again mention that they keep up with the family that way and can only have so many e-mails connected to a private blog. Plus, I don't have any idea of the decent kind of people who might like checking in.
So, I've been contemplating what to do, and had just been thinking that actually I was sure happy that there weren't any medical emergencies to report, when I got a text from my nephew Saturday saying my brother James, Uncle Jimi had not gotten up since Thursday evening, should he call EMT.
I had just found out the Monday before that he had been falling.  We were trying to talk him into going to the doctor, ER, chiropractor, anything.  He said his neck hurt terribly. Of course, I was worrying about the why of falling. He wasn't really able to tell me. It seems he has gone downhill since Mom passed away. He's lost about a hundred pounds.
I returned the text and told him to just point blank ask if he'd taken to his bed to die, or if not, the ambulance was coming.

I was on my way to meet them in ER when Jake said he didn't know if it would take longer than usual as he told them it was a non-emergency. Little did we know.  Upon arrival, his labs came back with a elevated creatinine level and a hemoglobin level of 2.9.  If you are not familiar with levels this is your blood level after you've already gone on and died.  My friend, of forty years of doctoring, said he'd never seen a level so low.
I'm a people person and in this hospital setting your doing anything to pass the time, calm yourself, etc.  I enjoyed watching the staff pass on this blood level information, and the look of the person they were telling.
Doctor friend said it had to have happened over a long period of time and the body slowly adjusted, but the extreme weakness was what was calling the falling.
 It is hard for my mind not to wander to all the "what if's" while I've spent this past six days bedside and ringside to a health crash. There are so many reasons that my nephew might not have been there.  A nurse said she imagined he literally had hours left.
After what continues to be day after awful day of inability to find usable veins, awful tests, a small ulcer was found at the top of the small intestine.  GI guy said it bled every time he ate. The fact that he stopped eating on Thursday likely saved him.
His kidneys have failed and he is now dialysis dependent. Kidney doc said the failing kidneys stressed the body and likely caused the ulcer.  Doc feels that using a peritoneal port (stomach) and  doing dialysis through the night is a better choice for him than the stronger dialysis three times a week.  They won't place that until his blood is stable. 8 pints and some platelets later it still isn't. And even then it takes three weeks to heal.
It was a Saturday in ICU so Ceece's sister was there to help navigate- thank you Jesus.
Otherwise, some sweet nurses and some ones who bring out my worst side.  I can't seem to get through a hospitalization without shaking the charge nurse's tree.  
In the meantime he has to have dialysis, so he got a thoracic port. EKG was off, so also needed a heart cath, but didn't want to do that with blood low.  Laws, what a mess. So, of course hospital wanting him moved to rehab, but thankfully kidney doc said he wasn't going anywhere till he knew if his heart could withstand dialysis. It couldn't, threw him into Afib requiring an emergency heart cath.  LAD 95% blocked, requiring a stent and blood thinner, with the thoracic port soaking him in blood over and over.  Also, he hurt his neck in the fall and while a CT says nothing is broken, he is in misery. Added to that he has not slept probably 5 hours total in six days and he's spent most of that time not allowed anything to eat or drink.
Why anyone thought it was a good idea for your family doc to not be in charge of your care was insane.  The heart doc is only interested in his heart and the same for each specialist. It took five days to get a patch for his neck, and eye drops for a irritated eye.  It is a nightmarish circus.
So, prayers that the thoracic port will heal, that his blood will begin to build on its own, and that his misery is relieved would be much appreciated.
Also prayers that the Good Lord will somehow shut down the creepy creeps.