Wednesday, October 22, 2014

The Nothing that Nobody Knows and the Healthcare Rant...

I want answers. 
There are no answers.  I feel like throwing up.  
What is this???  Is it ALS or is it the big ugly multiple blood clots??  
We do not know.  When will the blood clots dissolve??  We do not know.  
What causes ALS, what cures ALS...we do not know.  Will he die of the blood clots?? etc. etc.
Always the same answer....Always..He has shallow breathing, he has this, he has that...
I am getting a bit pissy.
My man is so weak and so fatigued.  He has lost weight, he can only eat with tube feeding.Today he wanted to get into his automatic wheelchair at the Hospice House because with all the accommodations it can provide, it is more comfortable and he wanted to sit in the sun.
It took THREE nurses to move him with the Hoyer lift. And they want to send him home Friday???  
To little ol'me????.
I insisted on discharge on Monday.  I am trying to imagine how I am going to do this.
Here is where I rant about the cost of catastrophic health care in America
His health needs nursing care. Because we have worked and have no debt, we are not eligible for nursing home care without spending down our money.  I cannot do that because I have 3 grandchildren to raise and my own life to live.  Hospice crisis care is only until the crisis part is past. 
 So to stay in Hospice is $250 a day.  To go to a nursing home  is $250 a day plus. All not covered by Medicare or BC/BS
So, he comes home. with nursing care that is at least $20 an hour for 24 hours times 30 and we are looking at an amazing amount of money.
Let me tell you it is more than
Coming home with Hospice means a nurse on call or a regular visit once or twice a week.  It does not mean 24 hour nursing care.  Now if we had wanted the expensive long term care insurance, it would have been helpful.  But, he could not get it with the huge family hx of cancer and I could not get it with asthma.
So..please tell me America that I love...what to do now???
Sigh...In 8 days, our lives have changed from sad to desperate.
Huge big blood clots in both lungs....Please???
I ask you is not suffering from ALS enough??
Just delete the rant...I cannot believe I am ranting online!!

Tuesday, October 21, 2014

O'Captain Courageous and the Opportunist

First we see the opportunist!!! While Granddaddy is away in Hospice.
O'Captain Courageous, my Dear Man is sleeping the rest of his life away in a Hospice Bed at Southminster.  He continues with shallow breathing, with clearing the mucus in his mouth, and with deteriorated muscles in his digestive system causing it to be sluggish.  The many large blood clots in both lungs remain.  He is extremely fatigued. The ALS nurse said that any episodes (infections, blood clots, etc.) in an ALS patient cause the disease to progress more rapidly. He does not eat but the food and medication that the nurses put thru his feeding tube.  During the day I sit by his side with my books and my hexies.
Oh, life what are you thinking??
Gratitude comes with my mother's Hospice friends visiting me, my sister and daughter taking up the load and friends like dear Katie.  Last night Katie met the buses, took the three grands to Karate, made them dinner, did homework and put them to bed.  All while Emily and I were visiting Himself.  Then...she took Evan to Walmart and bought the kids shirts for neon day at school and neon hair spray...
All this does Katie plus being pretty and young and wonderful.  How grateful I am for the friends that surround us.
How grateful I am for the courage that my man possesses.

Sunday, October 19, 2014

The Twelve Star Hotel

The Hospice House at Southminster for my dear man.
 Someone there told me this morning that as a quilter they would never make Hexies.  I said..hmmm, if you were sitting by a hospital or Hospice bed day after day....I'll bet you would!!
Last night I followed the ambulance transport from the hospital to the Hospice House.  It was harrowing because he was so fragile.  In I walk following the stretcher only to see one of my mother's former Hospice nurses on call for Himself...the grief journey gets complicated...
I find it quite amazing that the concussion bit keeps coming back to me.  The brain is certainly interesting.  The protocol for concussion is to sit back and do nothing.  So the body talks to itself, ,me thinks.
They say that Mr. O can only stay there up to two weeks till his symptoms are managed, then off home he comes to me on Hospice, with his feeding tube, oxygen, suction machine, Trilogy machine, Hoyer lift, breathing vest,cough assist and wheelchair.  We will need to hire part-time help to care for him and we need to hire someone to widen the back door to accommodate the wheelchair.
I am terrified. Our family cannot do all this, although my daughter thinks we can.  He is paralyzed below the waist and cannot transfer.
The Hospice doc had a consult with us. He said that these kinds of blood clots can move and do a person in in a second.  Great...makes for a calm day to day existence.
I am sitting now in my sewing room talking to my concussion telling it to chill. I am thrilled to have the house to myself for a bit.
My husbands brother, Brendan leaves today.  My daughter's man Brian leaves today.
Kisses and hugs to all of you who commented and to all of my friends and family far and near.

Friday, October 17, 2014

Mother....Is that you??

It is the same roller coaster...!!  I thought I would see you here.
Oh, they say, same church, different pew...
Mr. O'Quilts and my mother...
All the questioned doctors say that large blood clots in both lungs is a life threatening situation for anyone.  No doctor wants to take away they say things like...We judge outcomes by 30 to 60 days, not 5 days.  Or, expect a bumpy road...or he already was quite impaired, so we usually do not expect miracles...but do not lose hope.  
When  doctor looks into the hopeful eyes of a relative, it must be very hard to deliver grim statistics and watch the eyes downcast.
And then there was my mother who almost died 4 times before she fell out of her wheelchair and broke her neck.  Remember when the doc gave her three days and I called in the family only to be told by my mother that she took the wrong train...??  She enjoyed another 2 years.
I remember that I am not in charge in this life..
Hope vs. realism???  Are they counterproductive...probably not.
I feel shaky.  It is hard to grasp the details...Adrenaline keeps me going now....doing what has to be done.
Meeting the Hospice nurse tomorrow at 10 am.
Every cell in my body is on alert.
My Dear Heart...

Thursday, October 16, 2014

The Two Hexie Day

Thursday night update on my Mr.O'Wonderful. . Day two on 6th Tower, CMC main.
 In his words, he is now completely disabled. 
The heart a-fib has corrected itself with the help of medication, so the blood clots in the lungs are probably stable. He is on Warfarin for life so that clots hopefully will not be a problem again The main problem now is saliva build up in his mouth, thank you ALS. The patch, the suction machine...are not helping and he wakes in the night with the fear that he will choke to death on his own saliva. Our poor exhausted daughter spends every night in the hospital with him. When he calls for the nurse and the nurse says..."May I help you?"...he cannot answer as his voice is so impaired by ALS. Himself was never the same after the feeding tube operation 2 weeks ago and my fear is that he will never be the same after this onslaught of large blood clots. 

ALS I hate you.

They are not considering discharge until next week and my fear is that he will not be considered a candidate for coming home. Then he is worried about being in the doughnut hole for medications...ugh... He has asked for a Hospice consult tomorrow...stay tuned!!. A HUGE thanks to my daughter and my sister for their wonderful teamwork here. The grandchildren are doing great...Karate belt graduation was tonight!
My skills are not in nursing, they are in advocating.  Today I was quite busy, let me tell you.  When my mama bear gets out.  He has the best room, the best nurses...the best friends, etc. Thus it was only a two hexie day!!
Thank you so much for all your comments the past two days.   My blogging friendships meant the world to me.

Tuesday, October 14, 2014

Today's not so nice update

Thank you all for the wonderful wishes and messages and hugs sent my way.  It warms my heart that you all are so good to me.

I just left the hospital. 
 Mr.O'Quilts has marginal blood pressure, a very high heart rate and is struggling to breathe even with oxygen.  He has his breathing machine and wonderful nurses at the ICU. 
 I do not care.  
I  only care that he is so uncomfortable and that he is struggling so.
  His lungs and his heart are compromised as well as his body from the ALS.  His legs are paralyzed, his left arm is weak, his feeding tube is uncomfortable, his core is useless, he cannot swallow well and he whispers when he tries to talk.
It takes a strong body to fight large blood clots in both lungs.
 He no longer has that strong body.
The medication he is on does not destroy the clots, it just prevents new ones.  He refused the new meds to bust the clots because side effects can be brain bleeding.  He told the doctor that he has a terminal illness and is already paralyzed and certainly does not need a brain bleed.  So he refused and put his DNR on the table.
This new development is so sudden that I am in a fog...yes, I know...another one(:
I look at him with such love and I just cannot believe that this is the new course..
Doctors say that it is life threatening.

Monday, October 13, 2014

My poor dear man

Himself was way too weak today and was unable to get out of bed...Called the home health nurse...who sent him to hospital via ambulance  Test results showed large blood clots in both lungs...probably caused by the feeding tube operation 10 days ago. 
 Evidently any operation can cause blood clots and since his legs are paralyzed he is a candidate for those anyway.  
So, ER sent him to ICU where he is quite sick, heart involvement.
Doc said someone should stay overnight with him.
I was voted out and my daughter was voted in.
I was told to go home and rest up for tomorrow.
I have turned into my mother.
I am wired and eating peanut M&M's, well  known to reduce stress in wives prone to neurosis.
Life as we know it can change in a moment.
Stay tuned.

Sunday, October 12, 2014

The Correction and then the Blue Square Quilt

 One of the UFO quilt tops I finished the other day was this scrap quilt.  Just some 2.50 scraps and some blue fabric.  I like it a lot.  The rainy day didn't make for such a good pix, but that is ok.
You know that late at night I am prone to melancholy.  Beth reminded me that folks may think I am disappointed in them from my last night's post.  Not, not and not.  I have women friends galore who give with their whole heart. and some men...they fix the garden, they fix the car, leave food on the porch, give gift cards...etc...I guess what the post was about in my heart of hearts was the men friends of my husband...It only takes a text or email once a week.  Or is it my distorted projection of my dear man sitting alone waiting for the angels..when a quick weekly email could cheer him up.  No more posting for me past 9 pm!!!

And now I see that my blog has been hacked.  I changed my didnt work..(:  ugh
My girl is home from a dinner out with her friends...With a click click click...she found a stray widget in the behind the scenes of my blog... in computerland...and she destroyed the hacking creeps!!!!!!  Yeah Emily, and thank you Rachel for spotting it.

Saturday, October 11, 2014

My Life on a Roll....

This morning I delivered Liliana's quilt....way overdue..
 ..and the finished doll quilt for her 3 year old sister Eva.

 Since Kristen moved an hour away, I have had to re-assess my stash.  She has everything folded like in a magazine...however, I cannot find a thing without texting her...not good.  Close your eyes K..if you are reading this...ugh..while .looking frantically for my pink cupcake fabric, without finding it.. all I did was leave a mess behind(:
Mr.O'Quilts is now starting four tube feedings a day.  They last for an hour and a half each.  My sister and my girl have it all down to perfection, but..they need me to learn too.  Tonight for some reason I was well...I have had concussion symptoms for the past few weeks..but tonight..better. 
 I had a lesson.  Starting slowly.. 
We have some wonderful core friends...others shy away...they do not know what to say, or they do not want to be a bother.  I understand. I saw all that when I worked at Hospice  years ago.  Thank goodness that there are three of us here and family coming across the pond to visit and help.  The Mister no longer is able to talk on the phone...voice a whisper.  We are so lucky to live in the age of texting and email.TBTG.
Emily's beau arrives on Wednesday for a few days.  That  should be a very good thing.
Now...for that pink cupcake fabric.....

Happy Birthday Muggs

Last year I was experimenting with string quilts on legal size paper when I got fed up with the process.  The computer paper was too hard to remove and it was just too much.  So I downsized my plan.  This lap quilt was the result.  Just happened that the initials of a very good friend showed itself here.. Muggs...whose last name starts with a W!!  How perfect is this.  I know that u have seen the top before.  Here it is all finished and delivered today...a birthday present.  After sitting around for a few years as a top, I finished it in one evening...come on Diane...looks like procrastination to me.  I think she liked it.  Her mother and husband did
My girl is now at the airport dropping off Uncle Declan for his trip back to Dublin.  We all cried. He was a wonderful support throughout the crisis of last week.  And, he took the kids to Karate every single day..oh, my...Uncle Declan, thank you sooo much for brightening our week.

Wednesday, October 8, 2014

"Shine a Little Love............"

Someone just told me that whenever they see the light at the end of the tunnel, it is a train...ha ha hmm.
I had to laugh.  I do not think that way, maybe that is why it was funny.
 I do feel despair lately. I mean really, a feeding tube and feeding pump for my dear man????
And, then a little magic comes bringing cheer...some soup left on the porch, my friends coming religiously to quilting, laughter.
 And, today, an awesome package in the mail.
 From Beth at Smazoochie came the most comforting package. full of treats making my heart sing.

.Kangaroo fabric!!!!!!
 Birds on a Bunting

 And a grocery bag for my girl to bring on the Organic foods for us!!
 Everything made to perfection.
 Best of all came the gift of friendship from miles away, from a compassionate soul.
 I am blessed.  Thank you so so so very much Beth for lifting our spirits today. 
Karaquilts and Myrtovl  Your comments and support mean the world to me.  I am grateful to have new friends such as the two of you, especially while I am struggling so.  Please send me your emails so we can chat as I cannot seem to reply to your blogs.


Monday, October 6, 2014

Figuring it out

 Con mucho vino tinto...tonight's choices are...hmmm 
Should I watch:  Moving Gracefully Towards the Exit
Or Should I read:  The Ladies Number One Detective Agency, volume five???
Or..maybe this new arrival purchased on Amazon just before my new austerity program??
All the visitors from London and Ireland make my heart sing...and when they go home....what do we have????  They QUILT!!!!  How exciting:)
My niece (Cousin Ann) and the anniversary quilt she just finished  for her parents.

  My other niece, Fiona...getting with the program back in Currenrue, Co Galway.
My sister-in-law Maura lusting after fabric in a quilting store in Ireland:)

As for me..I am just sitting here trying to finish off my basted quilts as I pensively listen to the hum of Mr.O'Quilt's suction machine, the bed mattress, the breathing machine.  My sister is here waiting  to give the 6 o'clock tube feeding, my daughter is making dinner and bro Declan has taken the kids to Karate.'
Our world is rapidly changing.  People are leaving treats for us on the porch.
Joan left three nice pumpkins with boxes of soup for himself from Trader Joe's...Thank you Joan.
The feeding pump will arrive tonight with more feeding lessons tomorrow.
I cannot wait to show the quilts I have of all three will be this weekend.
I think I will compromise with green smoothies and M&M's.
Lynsey wet her pants at Kindergarten, Evan cried because he couldn't play with friends and Dylan acted out at Karate....but Uncle Declan took care of all that drama..TBTG
Muggs took me to lunch and listened to me talk.  She may be a saint???......I guess I am on a pity party roll and it is not even midnight!!!  Dinner will help.
  I will really try to keep this a quilting blog instead of a therapy one...but...sigh.
I look around and see at least 25 unfinished on my new budget, my goal is to finish.
Hugs to you all for listening..Well hugs to you all anyway.

Saturday, October 4, 2014

The Tempest

When life in not in balance in one area, everything seems out of balance to me.  The tempest.  Or, the tornado...or as the Thesaurus says...the williwaw.  I like that one best, but it is only from the straits of Magellan, not from the city of Charlotte, North Carolina. 
 Too bad, because williwaw just rolls off the tongue in an exciting way.
So, is it hoarding or collecting?  Mundane, but remember I am off balance.  Can the hoarder or collector ever retire??  Me think it is a chronic relapse issue.
Really, I think it is late at night. 
Here is my latest in fabric therapy...and perhaps the last for now.  
Such happy colors and soft good quality fabric.
 My dear man says that we need to cut back a bit.  What???  Was he talking to me?
We need to do some hiring of help for the feeding tube business which has been a real nightmare.  Not only was Himself in a lot of pain in the hospital, but the learning curve for tube feeding is horrendous. 
 The williwaw comes home. 
 Washing the wound, wearing gloves, everything sterile...pouring formula down the tube at just the right speed, being careful that the stomach juices do not come up and squirt a person in the face.  Being sure that the patient is not fed too much so they throw up.  Tube feeding takes about 45 minutes/ 4 times a day. My daughter and I are feeling quite faint, but lucky us, my sister rises to the occasion...sigh.  The home health nurse has come 2 days for 3 hours each time, to give lessons...we are a slow learn in nursing things. 
 Hiring help to lift him and transfer him and tube feed...$15 an hour x 4 x 30 a bit more than my fabric budget. 
 Just sayin' you see...just mulling things out loud so I can get a grip.
When fretting became too intense, I made this doll quilt. 
Good news....Mr.O has a brother Declan.  He came in to visit from Dublin town just in time.  
He is here for a week.  TBTG
Really, Thank you, thank you, thank you Declan...for coming to Charlotte to save the day!!

Thursday, October 2, 2014

Tutorial for baby changing mats and etc and etc

The other day life!!  So I have finished 6 baby changing pads for presents.  3 are already spoken for as I am quite behind in presents.

So cute and so easy...Here is the tute:
1 piece of laminate about 25 x 32 inches
1 piece of batting a little larger than above
1 piece of quilting fabric large enough to self bind mat
spray basting can
walking foot
plastic clips for binding/ or clothespins
disappearing marking pen
The metal rod on your machine

Spray batting with adhesive.  Smooth, then trim batting to size of laminate.
Turn over and spray batting again.  Center on backing fabric. Turn over and smooth, turn over and smooth..again.  Measuring the width of the project, mark a line half 16 inches.  Draw a line and stitch that line.  Put the rod in the machine measuring about 2 inches and continue to wiggle stitch the project.  Trim backing at one inch.  Self bind clipping with plastic clips.  Stitch down, trim thread..voila..very very very useful for changing baby just about anywhere. 

Very good thing that I got these done as we are just home now from a difficult two days in the hospital with Mr. O'Quilts.  He had a feeding tube put into his stomach and spent the night in the hospital.  It is quite fine to say that this is an easy operation if it is not your operation!!  He has had a lot of pain.  Today is a bit better and he was able to get out of bed to sit in his motorized wheelchair in his hospital gown to watch some tennis on TV.  Now comes the learning curve for the family on how to clean the wound, how to do the feeding with the formula down the tube, how to rinse the tube, etc.
Etc.  is the word lately.  This all ain't easy.
However, sew on my friends.  My man hates hovering so we have to do it on the sly..Good thing my sewing room is right next to his..

Saturday, September 27, 2014

MQG Block in the Box results...

Thursday night I had fun at Charlotte's Modern Quilt Guild.  My girl Emily and our dear organizer Kristen held down the fort here at home.
 Whenever I go to this guild, I feel the friendship of quilters envelop me.  People have such good hearts there and sew great things with great ideas.
Last year we started the "Block in a Box" block exchange.  Thursday night was the grand reveal.  Here are the blocks from my fabrics.  They are on this little design wall since my girl has her project on the big design wall:)  LOL
 Last night Emily and I had a sew in. (all three kids were at a Karate camp...6 to 10pm)
 Happy is me.
  We have both my Janomes set up...We called in dinner and got tons of sewing done.  I finished two baby changing pads and she finished 9 blocks in her project..  Today I have four more changing pads cut out.
The other night I could not sleep.  I was obsessing about things I could not control, forgetting that I was not in charge in this life.
So, at 2 am, I decided to read through some of my mother's poetry books.  In Circle of Love, I found this:

Then It Happened

The moon rolled over
turned out the light
covered itself with
a blanket of night.
 Well, my mother spoke to me that night, as I got such a tickle from the poem, I fell right asleep

Thursday, September 25, 2014

Friendship and Stuff

 A gift of friendship.  This quilt, idea from a Tula Pink quilt, is totally a friendship quilt.  Most of the fabric was a gift from Katie G.  The strips were cut and sewn at Mugg's beach retreat.  And it was long-arm quilted by Mary Jerz of Seamless Expressions.  A big thanks to all my friends for cheering me on as I made this happy quilt.  I so tried to get a good picture of it, but....This is the best I could do.  Shame that the photos do not do it justice.  It is very pretty.

My girl making yummy tortellini yummy..
This is a Hoyer Lift.  It arrived today and when the technical guy was showing us how to use it, I got concussion symptoms.  How strong and helpful is that?????  Jeeze Louize!
 Oh, yes...Art Gallery Fabrics are my favorite!!!

Sunday, September 21, 2014

Can You Believe it...and Prince Pat

Friends are sometimes just sunshine on a cloudy day...Block two for Muggs at the beach house.
Cousin Ann and Cousin Pat have gone home to London.  In their wake are such good feelings and uplifted souls.  We totally love Ann...but Prince Pat takes the cake.  Can you believe that he fixed things in the house, made us dinner, took the kids to Karate and to McDonald's afterwards...alone!!!  And, then...He told us to go for a girls' night out to dinner while he watched the fort. Unbelievable and amazing.  Talk about caregiver respite. I was totally relaxed, and that hardly ever happens any more.  There are not many folks who can make it happen like that .  A big thanks to Ann and Pat.  We love you so.
 Can you believe it...I have TWO finishes...I am so glad, as I am way, way behind on baby quilts and other gifts...way way behind.

 Of course the whole crew helped with the snipping...and only two holes were
  Em took the two oldest to the apple orchard they are with apple donuts and apple cider..Nice to have a wonderful auntie:)
Mr.O'Quilts told me today that now his arms are getting weaker and holding his soup bowl is harder.  Now, he has to put the bowl on the table and lean over to it.  He came in to the quilting room to give me a kiss and he said that I would have to stand up to get it, because if he leaned forward, his core muscles are so wasted, that he would fall out of the wheelchair.  Believe me I jumped for it, a kiss is nice anyway you can get it!

Tuesday, September 16, 2014

Running away from home...

Or, taking Cousin Ann on an outing with the four F's...Fun, Fabric, Family and Friends!!!
 Today's IQTO (Tuesday outing)   was to Mary Jo's cloth store in Gastonia, NC and to Sew Much Fun.  Here is our Jean meeting up with us for the first time since her surgery.
No, she is not working...but giving expert advice to Cousin Ann:)
Here is the fat quarter gang... Ninjas and Love

Some Kaffe
 Some Paisley
 and out of focus Zombies...of course!!
 Cousin Pat held down the fort with Granddaddy, made dinner and met the school bus!!!  Yeah cousin Pat.  Without you...there would have not been Sew Much Fun!
Thunder now...perfect for sleep.