Saturday, February 28, 2015

Hurling, and clinic update for Mr. O'Quilts...a personal post

Today's quilting picture is by Nancy...Baby quilt and doll quilt...Great job Nancy!! we get down to the nitty gritty...The ALS clinic visit  yesterday.  Suffice it to say
It was so exhausting that I am just up now at 3 pm and Himself is still sleeping.  We totally needed the two extra caregivers that we brought.  Clinic was at 8:30 and we got there at 10:30 with all the work it took to get my darling man ready.  The feeding bag, the catheter bag, the medicine bag, the diaper bag, Hoyer lift, wrapping him for warmth as he can no longer wear anything but hospital gown, getting the wheelchair van in position, TBTG he can still drive his own motorized wheelchair with his feeble right hand.  My only job was to get the children to the buses on time as with the weather there was a 2 hour delay..even that gave me total anxiety.  Our big ALS specialist spent lovely time with us. Even our Hospice nurse came in for that visit.
He emphasized what we knew already, the military and athletes have a higher rate of ALS.  Because my darling is a tennis champ..I always thought it was the energy expended in sports or the adrenaline ..but is the injuries...which leads us to:  Hurling. My dear has some mighty fine injuries from Irish hurling.  He has a split chin and a huge indentation in his forehead, only now fully appreciated as his hair has Dr.Brooks seemed to think concussions contributed..

Irish style Hurling 
American style Hurling
In America, hurling is slang for vomit.
Both words are appropriate in this situation!!!!!!!

Next, was the visit to the respiratory therapist..where he did a breathing test...FVC-forced vital capacity. Last visit in August, he blew a 66, Yesterday, he blew a 24.  This means that his breathing capacity is 24% of normal 100%.  We were quite surprised at this one.  It also means that the muscles supporting his lungs have atrophied more than we had realized..

Good news was there as well...Just gotta have some good news...In the loaner closet was a Dynovox computer speech device.  It was loaned to Mr.O'Quilts to help him communicate.  It felt like he would be getting his life back.  Just waiting now for calmness so Emily and her man can install it by his bedside.

A big thanks to Katie for taking Evan yesterday to my sister's house as he was too sick to  go to school.
A big thanks to Susan for meeting the kids at the school buses yesterday.
As soon as we were home, I had to take Evan to Urgent care...OMG..and poor Dylan got his birthday cake at 8 pm..since he is now a grown up 5...there was no complaining.
Thank you for all your patience and support as I finally got up the energy to do this post!


Rachaeldaisy said...

What a huge day! It''s great there was good news, and birthday cake at 8pm is very grown up. Happy birthday to Dylan. Namcys quilts are so pretty, the colours are so lovely combined with the pink. Take care and hugs.

ES said...

Well done for getting there, it was a marathon effort! Sorry to hear one of the kids is ill, that's always rotten.

The speech device sounds very promising.


smazoochie said...

Is this another adopted baby quilt? I love the idea of baby's quilt & baby's baby quilt -- so sweet.
I'd never thought about ALS before Mr. O'Q's ordeal. Physical injury? I'm guessing particularly, head injuries. There must be more men with ALS than women, at least in his generation. Sadly, women may catch up.
Bless all your hearts for making it through the outing. Happy Birthday to your youngest little man. And I hope the voice box works out well.
Hugging you all.

earthwalker quilts said...

What a day....but positive in it's way. The quilt is lovely, cute with the doll quilt too. Hope the voice thingo works....take some time to relax. All the best...

Mary said...

No wonder you are exhausted. Your courage and strength continue to inspire me. So grateful that there was at least one piece of good news. I hope the speech device helps.

Alcea Rosea 31 said...

What a day, you both must be exhausted. I do hope the voice box helps. Communication is so important.