There is no Joy in Mudville...A personal non-quilting post

My man went outside for 10 minutes and had to leave the beautiful day for the hospital bed again.  He was too weak, he could not breathe, he was not well.
 The comfort needed was through Morphine and Ativan, doubled today....again...
Tonight it is worse...He can not talk at all, only grunt...
.He is in obvious distress...
Squeeze my hand if it is swallowing, squeeze my hand if it is breathing...ok..breathing...more Ativan and more Morphine..yes..
.Call the Hospice on call nurse??...probably not as not many know about ALS...orphan disease...guess no one wants to know either as it is a big ugly nasty disease..All downhill with no hope.

I asked a friend yesterday to come by and see him for a minute..the friend said..he would but probably not since he cannot do sad...OK...I understand, I really do. but,
I do not understand why ALS even exists and why my wonderful man has to suffer like this.

All hands on deck here...my sister and my daughter and me..
Calvary of three..
Now...I have called the Hospice nurse...
It is clear that we need a a Calvary  of four!!
Stand by...Oh, my love..

The Quite Good Day

In quilting,I have told myself that I would try something new..

I have never made this pattern because I thought it was too much work.  

..such a lazy quilter am I!! 

Last night I started it and it was sooo easy and fun..

Promised self that I would not play with the blocks until I finish the London Olympic quilt..

but playing with color made me happy enough.

 Emi-Lou's cafe has a new chef...man Brian..such an awesome dinner.

 Somehow Emily and Brian do not approve of my diet.  They thought that adding greens to my beer was delightful...oh...nothing like a good laugh:)

  From Sujata Shah's blog comes this amazing vimeo.

Traditional Indian quiltmaking

The update is good...

Mr. O'Quilts spent  FIVE HOURS in his wheelchair out in the beautiful Carolina spring day. 

 The day was stunning and fun. 

 Kids in the play pool, Stephanie taking care of my man, Emily making another awesome late lunch..

.Wonderful, and I almost missed it.

I went to the grocery store this morning...joints all achy, mind all worried..feeling a bit dizzy...Poor me...the stats say stress causes joint pain and maybe the concussion symptoms are coming back and woe is me.

As I walked outside with the groceries, I felt a light spring breeze...the trees were all in bloom...the Carolina Dogwood, the Cherry trees...It was a perfect day and I almost missed it.

With my...long litany of woes...as my Dear Man says.

When I realized that without the neck brace, he was unable to control his head, I almost regressed.

A second look saw the peace and joy in his eyes as he loved being outside.

Love..

xxoo

Truth or Story??

The patient is stable, but the caregiver wheezes away....more asthmatic bronchitis from stress interfering with stamina...so that is it...

Here we have the great present that came last week from Laurel in Texas..

 She somehow picked up on the fact that I am a fabric freak..so she sent this fabric hanging from her book store.

 I love it, especially the cat:) And below...tons of books for the children...
Lynsey especially is pleased that we do not have to take them back to the library.

Thank you Laurel..mucho!!

 Now, sick or not sick, we are not messing with birthdays...Lynsey's, and Dylan's and Stephanie's..all within days of each other...so...here we go..a group party! 

 Emi-Lou's cafe was open with totally from scratch cakes...so yummy. 

 Because I come from an overindulgent mother...there were three cakes...we love to party!!

Cannot leave out Granddaddy...

  Esthetically, I am not sure I even like this quilt any more. 

 That's what I get for using only one line and not being able to think

..It is not coming out as I planned...So I am messing with it. 

 I have decided that it is my quilt of strength..or the strength that I am hoping for..

Somehow like a baby comes from the stork...I watch the sky for courage.....Cotton and Steel.

.I am not crazy about the Top Hat blue border...but I just might do it anyway--Just because I can..

Hmmm and put on a colorful binding...I had planned on somber..just cannot do somber.

Or, maybe I should just bind the quilt with it as it is....

Funny how what we start with and what we end with can be so different!  In quilts as in life.

My girl ordered a sale layer cake from Missouri Star for the bicycles...she gave lucky me the houses:)

And last but not least, the cartoon from Muggs so well suited for me:

These past few days, my litany of woes grew longer and longer till I could not see the light. 

That I would get sick again was more than I could bare. 

 I decided not to share my blah blah blah with the entire world when I was so stuck.

Finally,..a better day.

My man is  planning to go to the ALS clinic on Friday for the first time since summer.As he has been bedridden for months, my main caregiver will go with us.  It will take two people besides me to get him out of the bed in the Hoyer lift, bring the Trilogy machine and the suction machine, his toileting and formula for his feeding tube...then help him drive his power wheelchair into our wheelchair van.  He now probably needs to have his head and chest belted as his core has weakened so. We will drive 30 minutes uptown Charlotte where we will see about 10 ALS specialists in a period of 6 hours..if he can last that long...He has such fatigue. We really need my sister to come with us, but someone the kids know, has to meet the school buses on Friday afternoon in case we are not back in time...

I think it will be quite a nightmare...I am anticipating total exhaustion for us all..
But who am I to say??  Stay in the day, girl...

.In preparation for this clinic, Himself had to fill out a check list..

I asked him the questions: Check what applies:

Are you...

Mostly happy, mostly down/depressed/hopeless/ more sad/ do you have loss of interest/pleasure in activities/ crabby/grumpy, irritable/angry/worried/anxious/crying/difficulty coping....etc..

.He answered: I am mostly happy...

 OMG  Let me tell you  I could have checked way more boxes just being me!!!! 

And, I am the caregiver and do not have ALS

Finally from newly 6 year old Lynsey:

Grandma, Aunt Emily thinks you  are fat, but I do not...I think you are perfect....but...

Grandma..if it were Thanksgiving and you were a turkey...you would be dead.

That is because they always take the fattest ones first..

xxoo

Life on its own terms....

Ciara's favorite cat...the cat quilt made by her mommy and grandma.!!  

Here we are having a sleepover with twin cousins, Mia and Zoe!!! 

 Way to go Kinvara Irish quilting connection...Thank you Accuquilt kitty die for your help.

And Muggs has two quilts for her beach house...busy Muggs.

Friends and family are quilting away...yeah!!
Things with my darling are grim today.  His two sisters are here from Ireland and his brother Brendan from Florida..They had a great visit with Himself last night...
Then the night happened.  I was up twice with him last night moving his legs and giving doses of Morphine and Ativan..once at 2 am and once at 5..In between, of course at 4, Lynsey had a nightmare and was up at 4..and so it goes.
Today is so grim..
The energy it is taking his muscle deprived body to just breathe...is taking its toll.
  It is making him sweat like he is running a marathon...It is making him hallucinate and sleep all day.  He can nod an answer with his mask on.  He can no longer talk or write...and of course he can no longer play the piano, give his wife a hug, play sports, mow the grass, do his woodworking, do homework with the grands, read a book, do his family tree things, read Irish literature, visit with friends, receive emails...etc etc...
Oh, and did I tell you he cannot breathe...well.
Oh, my love...who would ever have guessed that this was down the pike for you.
xxoo

It's a Steal.....

I love our caregiver Stephanie...Believe me, she is the only one I would let steal my Goodwill $2.50 special of wonderful African fabric.  She could not believe I was going to cut it up..

Instead, she will be wearing it with leggings..Whew...dress...saved by the bell.

 I have started Tori's quilt.  Tori was just adopted by the assistant principal at our grandchildren's elementary school. Tori was like 1.5 pounds at birth and is still in the NICU.  Chosen by one single mother to gift to another single mother.

  Since adoption makes my heart beat with love, it was a no brainer to make them a baby quilt.

I am having a not so good day.  I was up dreaming last night...seems like every ten minutes, I was up at the  pulpit giving Mr.O'Quilts eulogy.  In the morning I remembered everything I had said...so creepy.  ALS is stealing my man.  Today I slept till noon.
 Now, the Hospice nurse and aide, my sister and daughter are all taking my dear man to our handicapped bathroom for a real shower, by Hoyer lift.
 He is nervous, he is so vulnerable.
 It takes all four of them...but he is trying to boss the show. There he goes, up in the air.

  My proud man's legs have atrophied so that they are just sticks..no athletic legs any more.  I thought I would faint with sadness.  Since no one was interested in neither my supervision, nor my tears, I made a few more blocks for Tori's quilt.

This is his first real shower in months.  Hopefully he will feel so much better.  I really need to get a grip.

Seriously.....??

Finally...a finish...So happy..This is rare at my house now-a-days..

 A gift of love...dropped on my porch with a cherry cake...made and gifted by Kathy.

One for my overwhelmed sister and one for her overwhelmed sister.

Thank you Kathy...so beautiful!!  They made us cry..we were so touched.

 Seriously....Really? 

 Must I keep  looking at fabric sales when fabric is pouring out of my shelving already???

It is so calming to look at fabric sales online.

 Guilty me!!...but it is sooo soothing..Getting new little bits now and then..

Getting a laugh here...

 And having a bright day here....

Well,  Mother has passed, my husband has a terminal illness, I am 100 years old...so,

why is it still so hard to use my favorite fabric..?

Eg..those lovely kangaroos that Beth sent me, or fabric I have saved forever..
On the pinwheel quilt just finished, the binding is about 20 years old and the new baby quilt I am starting has a background from Mae's discount fabric in Miami...even older!

.Something wrong here?...Is it really ok to pat it and love it and have a stash to admire in times of grief...
Or am I a total nut case...Do not answer this question, please....

My  Darling man is so stable that his stubbornness has returned...Ha!
  Of course, it is that very thing that  keeps him alive.
He is wearing his Trilogy 8 hours a night now!!! Yahoooo!

Now, he is refusing to wave to the camera to show the world how well he is doing.

But, then..maybe he just doesn't want to miss a shot of the latest tennis on TV.

Cranky Mama Bear has an outing

Here we are...at Sit and Sew...laughing and having fun!!
 (well actually,without the S girls, not so much)
Eating and gossiping and sewing away...

Happy Birthday Eithne...my present to you...a charm pack of Irish fabric specially cut by me for you!!

So why am I a crabby lady, you ask???  I think it is adrenaline withdrawal...

Being so high to handle the crises of the past few days, coming back from the station with no trains of any sort in sight.  

Sometimes we crash even when the news is good!!!

You see, I was not willing to take the Hospice nurses at their word and I called the ALS nursing supervisor.  She is the one who said it was CO2 poisoning and that he needed the Trilogy machine. 

 The others said it was disease process and end of life...etc.etc...

No wonder I am having mood swings...Jeeze Louize..

Well, since Himself decided to wear the Trilogy 3 hours a day, his cheeks are back rosy, his voice has improved and he is watching sports again instead of hallucinating and sleeping. 

 I am so grateful

However, my Mama Bear energy has been drained leaving me crabby, in spite of the good stuff.

Brain dead me went to the pool the other day and came home wearing someone else's blue jeans...

Can you imagine...I put my hands in the pockets, only to realize that my jeans had no pockets. 

 Then it came to me that the other ladies were going out to lunch after the swim and one of them would have no pants to wear...OMG

Today after my sit and sew, I could not find my directions to a project..crab, grrrr...so I tried to start two new projects...what a mess.  This one for a single lady who just adopted a hard to place premature infant.  Since I am all about adoption, I just have to make them a baby quilt.

Then I decided that maybe I did not like that and should use these cute animals instead...

Change again...I did some quilting on this scrap quilt.

We all know that this time of night should mean bed..
Now going to put on Mr.O'Quilt's mask, give a kiss and go to bed. xxoo
Grrrr,  Can you hear the annoying grumble from crabby Mama Bear???????

The Station Vacation

Definition  

Ileus is a type of non-mechanical bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small bowel.
- See more at: http://medicine.med.nyu.edu/conditions-we-treat/conditions/ileus#sthash.SPG06OmC.dpuf

I feel so strong...I do not know why??  Who me??

However, Uncle Brendan said it is just adrenaline and that once this is over I will crash.

I think I had just better stay in the day and be grateful.

A big wonderful thanks to Mona for sending me some Florida sunshine!!!

 Speaking of Florida sunshine, Mr.O'Quilts brother, O'Brendan flew in today from Tampa to check things out here in Charlotte. (doesn't my dear man look good in pink)?

 A gratefulness to Kelly at http://ihaveanotion.blogspot.com/

for the Christmas presents..M&Ms from Ohio!!!! Gotta love the friendship!

Did I mention that Christmas in January is my favorite.

Himself now has an ileus.
(This is a type of non-mechanical bowel obstruction that results when peristalsis stops.  Peristalsis  is the wave- like contractions that help push stool through the colon and small bowel.)  Many causes...but the one we know about..is from disorders that affect muscle function. ALS(:)
So he has been on Gatorade for two days and things are calming down..down there.
He looks 100% better, but reports that he does not feel better.

Definition  

Ileus is a type of non-mechanical bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small bowel.
- See more at: http://medicine.med.nyu.edu/conditions-we-treat/conditions/ileus#sthash.SPG06OmC.dpuf

My IQ group did a Mexican lunch today..7 of us...laughing surely does make a difference.
A visit from O'Brendan is good too. And, Mona and Kelly.
I am so so so lucky
xxoo
Did I tell you how lucky I am??!!!

Definition  

Ileus is a type of non-mechanical bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small bowel.
- See more at: http://medicine.med.nyu.edu/conditions-we-treat/conditions/ileus#sthash.SPG06OmC.dpuf

Definition  

Ileus is a type of non-mechanical bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small bowel.
- See more at: http://medicine.med.nyu.edu/conditions-we-treat/conditions/ileus#sthash.7COQ4Yds.dpuf

Definition  

Ileus is a type of non-mechanical bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small bowel.
- See more at: http://medicine.med.nyu.edu/conditions-we-treat/conditions/ileus#sthash.7COQ4Yds.dpuf

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Ileus

(Adynamic Ileus; Paralytic Ileus; Nonmechanical Bowel Obstruction; Ogilvie’s Syndrome; Colonic Pseudo-obstruction)  

by Michelle Badash, MS

En Español (Spanish Version)

• Definition
• Causes
• Risk Factors
• Symptoms
• Diagnosis
• Treatment
• Prevention

---

Definition  

Ileus is a type of non-mechanical bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small bowel.

- See more at: http://medicine.med.nyu.edu/conditions-we-treat/conditions/ileus#sthash.nEqXNRUR.dpuf

• Home
• 
  
• Diseases and Conditions
• Ileus

ShareThis

Ileus

(Adynamic Ileus; Paralytic Ileus; Nonmechanical Bowel Obstruction; Ogilvie’s Syndrome; Colonic Pseudo-obstruction)  

by Michelle Badash, MS

En Español (Spanish Version)

• Definition
• Causes
• Risk Factors
• Symptoms
• Diagnosis
• Treatment
• Prevention

---

Definition  

Ileus is a type of non-mechanical bowel obstruction. It results when peristalsis stops. Peristalsis is the wavelike contractions that help push stool through the colon and small bowel.

- See more at: http://medicine.med.nyu.edu/conditions-we-treat/conditions/ileus#sthash.nEqXNRUR.dpuf

Waiting at the Station

Because this is Grand Central Station, it is hard to know just what is going on. 

.I am standing at the station wondering which train will be ours.

I remember when my mother took the wrong train. 

 She thoroughly enjoyed her own wake and lived another two years.

People in and out of our house all day long.

I put the visiting preacher man to work putting my blocks on the design wall.  

My design wall  happens to be in my husband's room.

A quilter just has to do what a quilter has to do!!!!

This quilting blog turned therapy blog is about to get a bit personal....Because his relatives all around the world are looking for the real deal....here are the real deal pictures..

Our son had a very good visit with his father today....preacher man was here, as was the Hospice nurse..

 The good news is that tonight my dear man has decided to wear the Trilogy breathing machine as suggested.

This should help determine the destination of the next train ride.  Here he is asleep with his Ativan and Morphine and breathing machine

Because of today's absolute fright...with catheter being inserted and food being replaced with Gatorade, and trauma and trauma, I called in to work, two caregivers, instead of one. 

 Mr. O'Quilts is now a two person assist for toileting and turning, etc.

Because of the help, I was able to go once again to take a break at lunch with my girl.

And... to make a pair of foxy pillowcases.

It is called personal balance, if there is something like that.

It is funny.  I have taken many a train myself from Grand Central Station,

 but never before have I not known which train would be coming.

The New Deal

Today's self care regime for me.  Went to water aerobics, sat in the sun, had breakfast with my girl and finished sewing these 6 blocks for my Cotton and Steel deal.

 Then there is the Himself deal...
The head nurse at the ALS specialty clinic thinks that my dear man has CO2 poisoning...eg the weakened diaphragm muscles cannot support normal opening and closing of the lungs so that the CO2 cannot be pushed out normally..thus, sleepiness and mild hallucinations.
Apparently his body is now over saturated with CO2.
Using his Trilogy breathing machine could alleviate this.
  He has not used it for two weeks having felt claustrophobic and because of his choking reflex.
The clinic wants him back on the Trilogy for at least 3 hours a day.
So far, Himself refuses to don the mask.  
And the beat goes on..............

Hello Day

No quilting.yet.....me napping and napping and drama everywhere...So here is a bit of the other part of our lives..:)
Lynsey has learned to whistle..five years old is a very good time for that..as is 6:30 am before school.

She does not seem to mind at all the pillow thief..everyone sleeping soundly.

Dylan at the apple farm with Auntie Em, looking quite like his older brother!!
Pigs in the background.  They must like apples too

Evan getting his big cast cut off and a smaller cast attached. Quite the fascination as a saw cuts the cast and misses the skin..

Mr. O'Quilts has not been out of bed for almost two months now. 

 I want to scream...Get out of bed right now...come run with me in the wind.  Let's dance on the back deck...Lets hold hands and walk in the woods.  Let's quarrel about where to hang a picture or how to plant a rose bush.  Let's do the retirement thing like we planned...
Alas, he is paralyzed and he cannot..

.He wants to do it too...just like me.

Accepting life as it is and carrying on, it so tough sometimes.

Enough, enough..I am going to sew something right now.  I do not think I will be able to catch up on holiday sewing at all..
Marie..this is a picture that forever I seem to identify with...

And today's post from
Gratefulness.org

I would love to live like a river flows, carried by the surprise of its own unfolding.

by John O'Donohue
"Fluent" from Conamara Blues

Love Languages

  When I was working with families, I sometimes used a book called, The Five Love Languages.  It is about communication skills and how to nurture folks in the way they receive it, instead of how you feel that they should, etc.

Today I think that my love language is fabric...Ha!! Ha!!
 If you are not a quilter, u totally will not understand.
 But, then this blog is supposed to be a quilting blog after all!

From Beth  came this chocolate:)  After all, I love all kinds:)
xxoo Beth

From Ita came a lovely Irish tea towel..that could be used for just about anything creative. xxoo Ita

And treats...from my neice, xxoo Brenda

Of course there are other kinds of sweet love too. Pumpkin is 15, Dylan is 4.

Today's update: My man continues to lie weak in the bed. There are so many people in and out of the house that when I went 10 minutes to Walmart today, it was time stolen.
Today we had the Hospice aide to bathe him, the CNA all morning to care and feed him, the respiratory therapist to check on the Trilogy breathing machine, the ALS nurse to bring the Cough Assist machine and the Hospice nurse to make her visit.  When the ALS nurse started teaching how to use the Cough Assist machine, my sister and the CNA were attentive. 
The wife here had to go outside to breathe fresh air, feeling dizzy as usual.
 We have so many machines around his hospital bed and so many electrical strips plugged to the max.
 I hope the house does not burn down.

The respiratory therapist said that her husband had ALS.  He lay paralyzed for 2 years, but then not to worry..... as every case is different...like that is some solace.
  I am still eating M&M's instead of Valium.

 It is very nice to have Mr.O'Quilts family visiting from Ireland.  It is a loving boost for all of us.

Tonight all three grands are going to a free Karate camp from 7 to 10.
Should I make potholders or go to dinner with the family..The CNA is taking care of the Mr.
Dinner was lovely.

I want to hug my man, but I cannot as he is surrounded by machines.  I can blow him kisses...and his blue eyes can still twinkle and that is good.
 My daughter is dealing with this with aroma therapy...a different cure in every room!
 The dog is dealing with it by sleeping all day...good idea Zoe!

We are still blessed that tomorrow is a brand new day.