Wednesday, October 29, 2014

All day, All night, Angels watching over me....

I am now convinced about the angel thing...
Oh, my.  As if we did not have enough going on today.  A phone call from school for Evan, age 9..via monkey bars...a totally broken wrist in two parts.
  All day again in the hospital.
  In fact, I saw some folks from the previous visits who recognized me...!!
Seems that I am frequent flyer, unfortunately. 

So brave is my oldest grand in his Carolina blue cast...
 And, come on...didn't the doctors and nurses say that he sang Disney songs along with their I-pad all thru the surgery!! ha!.  He remembers nothing.
Hemby children's hospital ER is awesome...not to mention our dear Dr. Lee...who seems always to be there to rescue us when we need him so.
I left the house this am at 10:30 and arrived back at 5:30.  A quick Hydrocodone to help my boy with his pain and a quick kiss to his 5 year old sister who was totally jealous...Lordy..
And, then a peek at my dear man.
Oh, no...he was not well.
 A call to the Hospice nurse.  Morphine for the first time ever...to help with his breathing.   He seems to tolerate it with no side effects and is a tiny bit better.  He wants me to sleep on the sofa with him tonight..
.So we have one sick upstairs and one sick downstairs and...What can I say???

A big thanks to Angel Ava for finding these CNAs for me.  I now have hired help for 8 hours a day with my sister filling in.  TBTG
And Angel Ava sent a yummy dinner...just in the nick of time.
 My man is just not himself, he is just not well.
We also have on board the door guy...Andy.  One door is complete and the other to be done tomorrow..Angels galore.  I am so grateful:)
One bit this week when I was actually able to chill...I saw these interesting clips...check them out.

Monday, October 27, 2014

He is Home!!!!


No pictures of him home.  Just smiles and hugs and relief. 
 He is still very sick and weak, but he is home. 
 Short post cuz we are all exhausted. 
 He is home on tube feeding only, nothing by mouth. He is home with medication 7 times a day crushed into his feeding tube.  He is home on oxygen.  He is bed bound.
We love him home.
We are trying to move the bird feeders to a place where he can watch them.  We are interviewing help well recommended by dearest..(ava)
A big thanks to Laurel for sending the children books.
.AND for what I found in the middle of the package...just for me...
Organic M&M's!!! 
 Thank you Laurel!!  My man is happy that you have taken care of his wife:)
 There was a book in the lot called something like...Gross Jokes....I can see Evan..age 9 all en--grossed in reading!!
Thank you Muggs for taking the kids today to Karate and to your house for dinner and baths and reading.
It helped so much on this scary first day home.
Packages galore came from UPS...heart beating(:...nope...wrong..no fabric..
Hospice supplies..Ha!!

Sunday, October 26, 2014

Cousin Joe Saves the Day

Is it happenstance or the hand of God?...You tell me!. 
 How could it be that Cousin Joe from Dublin would just happened to be working in Raleigh this week and could drive down for a visit during our crisis??!!  He has been the best.  He has taken the grands for a long walk in the woods, he did the dishes just like Nora taught him to, he helped rearrange the furniture in my man's room for tomorrow.  And, he is going to stay tonight and help with discharge. 
 Yup, Mr. O'Quilts is coming home tomorrow!!!!  That is a very good thing.
The Hospice nurses have promised to be on hand at all times to help him and to help us.
 TBTG
 Last night my sister took the kids to the big Karate Trunk or Treat party.
  Look what they came home with and it is not even Halloween yet.  They are all in bed.....hmmm 
and... I have already eaten every single one of the Butterfingers:)
 Here is my cat, Pumpkin with her friends...This is her kind of season!!!
 My new ironing board cover..all duct taped down with the help of Cousin Joe and my sister:)  The stains just would not bleach out of the giraffe one.
And so it goes.  My dear man comes home tomorrow after two weeks.  Ambulance transport is set for 12:30, Hospice home admitting nurse comes at 1:30.  The next phase begins. 
 He is struggling.  There is no change. 
 Cousin Joe and I visited twice today for 10 minutes each time.  My dear told us that that was too much.
  He is so fatigued.  I hate blood clots. 
 They are the complication that we did not expect that have aggravated the ALS.
Thank you for all your comments.  I hate not to reply when you all have been so good.
xxoo

Saturday, October 25, 2014

What to do?? What to do?? She frets.......


I am home from a 6 hour bedside stint at the Hospice bed.  Himself is sedated with Ativan so there was no communication.  So, I slept too.  He is too weak to sit up by himself, never mind to get into his motorized chair.
 All medical votes say that he will be bed bound forever and ever and ever.
So, I am home eating a yummy dinner left by Andy on my porch and thinking.
I am thinking. Now I have a stomach from thinking!!
I started to read an online article about death in ALS by blood clots when I caught myself.
 I cannot go there. Before I go back this evening, I am going to get out a quilting UFO to focus myself.
My man is ripe for infection with his weakened state.
I am not sure it is good for me to sit and watch him sleep every day...but what to do??

Maybe I will wash my ironing board cover??
 No...I will use these saved treasures to make bags??
 I took out this UFO project box...too much trouble(:
 I guess I will just go back and visit my Rip Van Winkle.....

Friday, October 24, 2014

Moola

In polite company talking about money is so not okay.
 I am way past polite company at this point!!
Even though my dear man has saved for his retirement and we are debt free, we are at great risk with a catastrophic illness.
 Getting my politics up again...again.
Just FYI
In America, Democrats, Republicans and Independents alike get ALS, Parkinson's Disease...etc..So in the government, working hard on legislation for catastrophic illness would be much better than all the infighting for control.  
Whew...I got it out...again.., just sayin'.
Friday's update:
Depression.  Himself is now sick of being sick.
He is depressed, anxious, sad, scared and claustrophobic. 
 I cannot wait to get him home for some non institutional TLC.
We are ordering a batch of Prozac or Lexipro...ok..how about a very large family bottle!!
(but I do prefer vino tinto)
Today I found out that Ensure complete along with Benecalorie...(formula for his feeding tube) is costing us $420 a month for his feeding alone.  Medicare will cover the Ensure through Hospice, but the extra is $180 on us.  He is loosing weight like crazy so the Benecalorie is important for him to live.
We have now hired a CNA for $16 an hour...He will come 4 hours a day for $64 a day for 30 days is....$1920 a month.  We may need him more.
Now I just buried my mother 5 months ago....and as you know for 12 years, she paid $5000 a month for her care...every bit of the sale of her house...and every penny she had.  That is more than 1/2 a million dollars!!!!
She died just in time to be out of money...
WHY am I going on so?????
Not that we are destitute and need money...BUT for all to know.
I didn't know all this before it happened to us.  Education is important...but then, maybe I still would not have paid attention to the money.
I totally have my Mama Bear up...I love advocating!!!  Mr.O will have the best, believe me.
But why should I have to fight for the human dignity when ALS is already enough.
Whew...I am a mess here...so. since my organic daughter is visiting her man working in Minneapolis...well I just decided to indulge!!!!!
I so love my support system..You all..
and....chocolate ice cream in a waffle cone with chocolate sprinkles!!



Thursday, October 23, 2014

Turblence

When I was a flight attendant I remember terrible turbulence going into Panama.  I was standing right next to an empty passenger seat.  The G-force was so great that I could barely clasp the seat belt.  Once we landed, all the flight attendants...no seat belts on them...went to the hospital.  For weeks, I had large hemotoma  bruises all over my body from just getting into a seat.  
That's how I feel now...turbulence all around and I do not have a seat belt on. 
The good and bad in life as depicted in quilting...ha ha...below is the good...a birthday boat block I made for Muggs birthday...so fun to do.
 Then, the experiment that did not work out....off to the scrap bin with you.tomorrow. Time is not to be wasted on the ill conceived ideas.
Such a difficult day.  Mr. O now has anxiety and is asking for Ativan  every 4 hours.  He feels claustrophobic because he cannot move his body, his swallowing is so much worse today.  I am sure he feels like he is choking.  He takes all nutrition through his peg-tube.  His shortness of breath continues. 
 ALS has trapped my dear man in his own body seemingly in 10 days..
 I sat with him all day today, my daughter sat tonight. 
 The social worker is tentatively planning discharge home on Monday with Hospice care.

The greatest of all news...friends..oh, yes!!   Anne and Jennifer brought food, Jason and Pat showed up with pine needles for the yard and put them around.  Jason organized my refrigerator in the garage with drinks...ha!!  I told him I would put a pix on my blog:)  Muggs keeps putting diet coke and books for me on my porch. MP ordered the Elsa costume online for Lynsey.
And Cousin Ann gave me a gift cert to Fabric.com....eeeekkk
I was so excited with that one, that I looked over the sale today and ordered...I mean really..cheaper than any other kind of therapy...and then...and then..
I forgot to use the gift cert!!!!
That is my brain on empty.  I never ever would have spent the money without it.
Also, when I go to see my man, every day I miss the turn off to the Hospice facility..every day.  So, sigh!!
Thank you so much everyone.  And even though I do not answer the comments, believe me they keep me going.  I need them so much. xxoo 


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 Fabric.com
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.
xxoo

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 hope..so 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 going...watch 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.
xxoo

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.
Ugh!!
Stay tuned.
xxoo

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 password..but...it 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 anyway...lol
 
 
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. 
Then.....
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 finished...delivery 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 projects...now 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 days..is 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!!