Tuesday, April 20, 2010

Calmer nights, busier days

"Turn that off. I don't think I can handle this and Barbra Streisand." BR's mother, Dede had arrived with tears in her eyes, followed by her sister, Beth.

BR has slept peacefully now for two nights in a row. At the first sign of restlessness, I have been calling the nurse for breakthrough pain medication, but I've only had to call once at night. I'm very happy with the progress keeping his pain down.

We are now in full visitor mode here at Christopher House. In addition to Dede and Beth, our neighbors Cindy, Damaris, and Suzy have made and delivered dinners. BR's brother John, niece Chandler, and John's associate pastor Todd drove down from Keller for the day. Scot, Cathy, and Sharon are here from Dallas. Chad and David have flown in from Colorado, and Jay from Miami. Their presence is a great comfort. There's nothing like laughing with family and friends to take the edge off.

BR was awake, but not totally alert for most of the day yesterday. Most of what he says is unintelligible, and we treasure the moments when he is able to clearly express his feelings. For example, when I told him Jay was coming, he let out a long "oooh, Lord!"

Yesterday morning, it looked as if BR was down to his last hours. His heart was racing. His blood pressure was very low. His hands, feet, knees and elbows were purple and splotchy. After a full day of company, his vitals stabilized. I'm guessing that he refuses to be left out of a good party.

The doctors added IV Ketamine to BR's pain med cocktail. Yes, Bob Duff -- BR is now mainlining Special K. And it seems to be working. There was no restlessness at all last night, and he woke up this morning asking for "happy coffee." Nevermind that he doesn't drink coffee. I'm trying hard not to get my hopes up, and instead I am just living in the present and letting the future take care of itself.

I need to wrap this up, but not before thanking Herrad, Richie, Anne, Stephany, and Patrick, for rallying the MS blogging world to our support. It's a strange and marvelous community, and I'm glad to be a part of it.

And finally, I've set up an online gallery for people to share their favorite photos of BR. If you have some to share, just go to http://gallery.me.com/bobrobertmckellar/100173, and click the "Upload" button in the toolbar.

22 comments:

Lisa Emrich said...

It is wonderful to hear that you and BR are surrounded by family and friends. Simply wonderful.

I hope that they are a great comfort and can help share the burden just a bit. I've been thinking of you both a lot but I don't often know what to say.

Big hugs.

Herrad said...

Hi Steve,


Good to read you have family and close friends there with you both.

That is comforting to know.

I was very happy to post about you and BR and ask other bloggers to support you by visiting your blog.

Good to know that BR has spoken and that he is not in pain.

Sendinge tons of hugs and love your way.
Thinking of you both.
Herrad

Kelli said...

Thinking of you and wishing you all peace, comfort and love at this time.

Stephany said...

Wishing peace-filled and joyous moments for all of you while you spend time celebrating the life of BR, surely he feels the love from everyone there. Thank you for sharing your lives with us all in the blogosphere.

Living Day to Day with Multiple Sclerosis said...

Steve,
I am so glad that you are surrounded by so many family and friends. I am also glad to read that BR is peacefully in comfort. I am sorry you are going through this. It is so hard to come up with the right words, but just know that you are in so many hearts and minds right now.

Cranky said...

Steve - thank you for keeping us up to date. It is wonderful to know you have loving family and friends there in support.

Like Lisa, I have been thinking of you but I am often at a loss for words at times like this.

XOXOX

Nat said...

Continuing to send my love and support through the blogosphere to you both.

Nat

Lauren said...

Oh Steve, Herrad just advised me of BR's condition which is deteriorating, and I am so sorry to hear of this news :/

I am sure that you love BR as much as I love my mother who passed away in 2004..., I still feel her presence around me and I know she is not only in a better place, but she can now watch over me with all of the angels in Heaven.

This brought me so much peace during what should have been a very sorrowful time for me.

Please try to think of BR doing the same thing for you-a wonderful man-so bright and cheerful-soon having the ability to watch over you full time with the angels in Heaven, including my mom!

And even though we've never met before, I send you all my prayers, hugs, and support--

Lauren :)

webregi said...

Lisa Emrich lead me here. You will stay in my heart and prayers. I wish you both peace.

Kris said...

The gallery is a lovely idea. I hope everything gets better! Thinking of you!

Herrad said...

Hi Steve,
The gallery is lovely, the photos of you both are lovely, you are both gorgeous.
Love,
Herrad

Joan said...

Although you don't know me, you are in my thoughts and prayers. There is nothing I can say to provide comfort, so I won't even try. Just know that many are holding you in our hearts.

Blessings to you both.
Joan
Newark, Delaware

Have Myelin? said...

I remember the last days with my daughter. She died in June of last year. There are no words anyone can really say to make things feel better.

I am thinking of you at this time.

Anonymous said...

Loved looking at all the pictures! Hope this has been a peaceful day.
Sister from Belcher

Sandy Emrich said...

Steve,

My daughter, Lisa Emrich, shared your story with me Sunday morning. It reminded me of when my mother died. I am so thankful she shared her desire never to be on life support; Mom was a registered nurse. It made it much easier to say goodbye and gave me the opportunity to share the same desire with my children. I will pray for you, BR, and family during this very difficult time.
Much love,
Sandy Emrich

Diane J Standiford said...

Steve, I lost track of you guys, probably during my ICU/computer/move to asst living---I had to catch up/ Gees, I shake my head at all you guys have endured...so sorry I lost touch...now, well, glad family is near and you are hanging tough. Anyone with or who has a loved one with MS is feeling great pain along with you. I will pray for both of you tonight. Peace, peace, for BR.

Erika C. said...

Sending thoughts of love, comfort and healing your and BR's way. Herrad told me about your site.

love,
Erika

Stephany said...

My favorite posts and photos were/are the ones with BR holding the newborn babies. I want you to know so many times, how those posts and photos would give me so much hope and I always admired both of your tenacious spirits and smiles....and the little 'Onesies' outfits always made me smile.

Be free BR, into the light you go, with a broad smile for everyone to remember. Peace, to you Steve. --Stephany

Jo said...

Hi, Steve. I'm Jo and found my way here through Herrad, bless her sweet heart.

For the past three years, I have been an activist for the MS cause. by fundraising (I've raised, thankfully and gratefully, almost $12,000) for the MS Walk, volunteering and working at the MS camps once a year when they are held.

I am so sorry for this terrible, debilitating experience you and your partner are going through and am so grateful that you have so many people rallying around you in blog land and in life.

You are the pillar of strength and when you can't be, don't. Let others lift you up.

Know there are many of us out there who continue to fight to end this.

You are in my thoughts.

Wishing you peace and serenity,
~Jo
'The End Of The Rainbow: Life After Bankruptcy'

Shauna said...

How wonderful to be surrounded by so much love and caring in one's last few days. And to have your favourite videos played for you. My thoughts and prayers are with you both.

S.

kmilyun said...

I - well at a loss of words but I will try. The photo album is most awesome and very touching - so full of love.

Cranky said...

Great photos in the gallery. They show two people very much in love and heartily enjoying life. A great idea to set this site up for friends to add their photo remembrances.

Thinking of you two a lot.

Love, Cranky