Updates Page 8

Posted:  6-14-10, by Leslie

Hello to Our Amazing Support Group,
 
Curt came home from the hospital on Tuesday, June 8th after receiving his tracheostomy on Friday, June 4th.  We hit quite a few road blocks when it came to getting home, such as getting a ventilator in the house, and getting as many crash courses on trache care and vent knowledge as possible, but people worked extremely hard to get Curt home in record time.  Thank you to all of those involved.
 
I want to share some information with you which was sparked by a letter Curt received in the mail today.  When Curt started in the home remodeling business about 11 years ago, we did advertising in the small local papers for about two years.  We were a small company and always wanted to remain that way.  Curt felt he was capable of doing a more quality job, being the boss, and being part of the physical labor on each project.  He was not only the boss, but one of the worker's.  After a couple of years of advertising, costs to do so kept going up and we decided to no longer spend money on doing this.  We soon found, through the jobs that Curt and his two-man crew did, quickly led to these customer's giving referrals to their friend's, family and neighbors.  Curt continued to get job referrals, without advertising, and I truly believe it's because of his honesty, craftsmanship, kindness, and his crew.  Homeowner's got to know him personally.  Day to day contact.  They saw the boss working and respected that.
 
Today a card and letter arrived in the mail.  This letter made me cry, and it has done so because Peter has put into words, how I think all of his customers feel about Curt.  Sharing time...
 
Dear Curt,
 
When I first moved home from Baltimore, I knew that father's house needed a lot of work, but had no idea who to contact.  Then, Stephanie and Matt Kribs referred me to you - not only because of the high quality of your work, but also your personality and that of your crew.
 
Once you began the work, I could immediately tell that you're extremely knowledgeable, brilliant, and have a great wit.  I enjoyed your presence in my house and life, and thought the quality of your work was impeccable.  I appreciate it every day.
 
So when I learned about your health, I was torn apart.  I eventually decided that the only useful thing I could do was send money.  If I could, I'd send you so very much more than I have - you deserve it!
 
But I've done what I can, and pray that science advances enough to be useful.  Remember Steven Hawking!
 
Much love,
Peter
 
Never Give Up and Cure ALS,
Leslie


 

Posted:  6-5-10, by Curt

Thanks for all the well wishes.  Thankfully, the only pain I have is the pain in my ass.  Hopefully that will go away when I get to leave.  Doctors say I'm doing great, just need to get some edumacation for Les and I on how to care for my newest appendage.  I am starting to feel like a cyborg.  

I convinced the nurses to let me get up Friday night @ 6 and stand, and then wouldn't let them make me lay down till 9.  Man I hate lying around in the hospital.  Today I got to walk around and do some laps around the second floor.   When we went by one room, the man woke up and said, "Get out of here you mother cussers, or I'll beat your #%&."  I think he was jealous that I got to walk around, or I am in the psyche ward, and just don't know it.

Hopefully Ill be home Sunday, Monday, or Tuesday.  They won't say.  There's no place like home.  I miss seeing my beautiful kids.  There are times in the past I would have thought time away from them was a vacation.  Boy was I wrong.  I would like to give a special thanks Cindy for offering to come in and give me a sponge bath.  Sorry it didn't work out.  Thanks for all your love and support and god bless you all.
Curt
 

Posted:  6-4-10, by Leslie

Hello,
 
Want to let everyone know that Curt's tracheostomy went very well this morning.  He is in ICU, but seems to be recovering quicker than expected, and hopefully he will be moved to a different floor tomorrow.  That means, his hospital stay may not be 5 days and I can't tell you how happy that makes him.
 
I want to thank Dr. Jeff Deppen at Ingham and Dr. Tony Briningstool at Sparrow.  They are truly amazing men, gifted doctors, and...our friends.  They have helped us in the toughest of times when we didn't know which direction to go in.  We often feel lost, and they have helped guide us in making the best decisions for Curt with this unpredictable disease.  Annemarie, a nurse who runs the Neurology Clinic at U of M, has also been there hand in hand with us along the way.  She replies to my every call, every email and like Jeff and Tony, has a compassion for people that makes me so proud to know them.  To all of you, my most sincerest thank you!
 
Curt had some visitors last night in the hospital before his surgery this morning.  This "club of men" kept the floor a little rowdy...I just shake my head!  Thanks for keeping Curt's spirits up.
 
This is a tough journey...but by all means, we are going to fight it until we find a cure.  With the strength that we have surrounding us, there's no reason we can't beat this.
 
Love and Cure ALS,
Leslie



Posted:  6-2-10, by Leslie

Hello our amazing Family and Friends,
 
I'm not sure we say it enough, how thankful we are to all of you for your support and love.  Many of you sent Curt birthday cards, birthday wishes and some of you made a video...glad we didn't have to come bail you out of jail!  Thank you for all of your kind notes you send to us on the web site.  We try to answer them when we get time, so thank you for your patience.
 
As some of you already know, Curt will be having tracheostomy surgery on Friday, June 4th.  This surgery will help him remove secretions from his throat, and though it won't prevent pneumonia, it will lessen his risks.  For you and I, we merely swallow our saliva or if we have something in our throat, we cough to remove it.  ALS takes these abilities away from Curt, and he uses a suction machine to remove such secretions.  The machine, however, does not help him remove secretions lingering in his throat and the tracheostomy will allow him to remove them much easier.  Of course, there are risks of infection with the trache, but we feel quality of life is what is important here.  Curt is expected to be in the hospital for about five days and if he is feeling up to visitors, I will be certain to post an update.
 
A few weeks ago, our daughter, Brantae, told me that she was having a hard time remembering what her dad's voice sounded like.  I tried to console her by reminding her that we have so many family videos that we can watch.  This conversation also reminded me of a message I have on my cell phone.  Back in November of 2009, I went away for a weekend to go to a David Cook concert with a friend of mine.  Curt called and left me a voicemail, and this was when he first started to have slurry words.  At that time, we thought he had allergies, but I saved the message because he told me the cutest story.  I am so thankful now, that I have never deleted it, but for the life of me, I don't know how to make it a permanent "save."  If anyone has the answer, please let me know.
 
I want to share the voicemail message with you...
 
"You've gotta love the positive outlook of a young kid.  The kids' ran out to put something in the mailbox for me.  Well, last night, someone threw a pumpkin at the mailbox and knocked it down so it's laying in the yard.  Quinn and Brantae came running back yelling, "Dad, someone knocked down the mailbox, someone knocked down the mailbox...what are we going to do?"  Then, Sadye came running back yelling, "Someone gave us a pumpkin! We got a free pumpkin!  They gave it to us!"

If only everyone looked at the positive like a 6 year old child.
 
I would also like to share a note with you that Quinn wrote to Curt last week:
 
Dad,
You've been there all my life.  But now I might just lose you to this disease (ALS).  I know there is no cure, but I will wait all my life to find one.  You've been there for homework and love.
I've loved you all of my life,
Quinn
 
Love to you all...thank you for being there for us.  And, cure ALS!
Leslie



Posted:  5-26-10, by Curt

In case you were wondering, the one who talks the most in our family, is also the one who types the most.  The past few weeks have been a littlle rough, I won't lie.  It is quite a shock to go from never being sick, to always being sick.  The doctors and nurses always ask who my primary physician is, and we kind of laugh, because I have only seen him once in ten years.  And that was for a physical last year, where he told me I have the heart of an 18 year old and some allergy problems.  Oh well.
 
It is strange how the world can be crashing in all around you and it only takes one sentence or one look to change your perspective.  During my recent stay in the hospital one of the wonderful nurses made the comment when I was checking out, that "I was truly blessed."  He said this after reading a drawing my daughter Brantae had posted outside my doorway in the hallway.  She left explicit directions that it stay in the hallway for all to see.  It said "Pray for Those with.... broken bones or body parts, weakness, nemonia (pneumonia), cancer, als, not breathing, and pray for everyone with problems."  Inexplicably the first thought in my head when he said "I was truly blessed" was that, "Yes, I am truly blessed."  Now let me tell you I have plenty of anger, sadness, fear, you name it circulating in my brain every day after my diagnosis, but the first thing that popped into my head was that I am blessed.  He was basing this on meeting my wonderful family and friends that had circled the wagons and after hearing my texting ringer (which is Napolean Dynamite saying "Get off my property, or I'll call the cops on you" constantly going off from well wishers.  It is going to be hard, but I am going to try and keep my same sarcastic, carefree attitude that I had before ALS.  Some days will be harder than others, and it is a rough road, but with everyone's love, I will endure.
 
Some of you may already know this but I am married to an amazing woman.  If I would have filled out a dating questionnaire, none of her boxes would have been checked. She doesn't like sports (although she faked it during courtship), eats healthy, hates steak, and is always right.  None of this matters though because I learned that all the differences are what make it work.  I am usually late, she is usually early.  Together we are right on time (although she is mad because we aren't early).  She is clean and I am slightly messy.  This one doesn't work out so well for her.  She is an extremely creative person who has dedicated her life to our family.  If you see her out and about, don't try and hug her because she will probably cry.  Compliment her awesome children and she will leave smiling.  I feel as though I have put her in a bad spot, but she says there is no place else she would rather be,  and there is no place else I would want her to be.  She is the unseen hand that lifts me up.  Together we will fight this with all we've got.  And she will still tell me to pick up my dirty laundry.
 - Curt
 

Posted:  5-23-10, by Leslie

YEA!  Curt came home from the hospital on Saturday evening.  It was a very long 6 1/2 days.  The doctor said we were at a "fork in the road."  Curt had the choice to stay in the hospital, or be set up at home with oxygen...home...with a shower...without a million wires attached to him.  In the hospital room the floor had a kind of wood design on it.  One section, had a crescent shape and was cream in color.  This was the smaller section of the room and the larger section was the brown area.  Curt told his sister, "I have never stepped on the brown section."  Curt was confined to such a small space (5 feet in diameter) that he never even got to go and look out the window.
 
At one point, the blood pressure cuff turned on...we realized he never had it off in 5 days.  There were so many wires and tubes and people coming in and taking blood, doing x-rays.  I must say though, the nursing staff and PNT's (not sure if that is what they are called) we so caring and kind.  And to our friend, Tony...thank you.
 
In the hospital, Curt was lacking sleep and I was hoping the comforts of home would help, but last night was still a little bumpy.  I know I was exhausted from the hospital stay and the lack of sleep and I can only imagine how his body felt depleted.  I felt helpless...I feel helpless.  And I'm sure that is the same way that other family members and friends who saw him felt.  But he's home now and he'll celebrate his birthday, at home!
 
Curt has decided to proceed with the surgical procedure of the tracheotomy.  The plan is to have it sometime later in the week.  That would be a possible 5 day stay in the hospital...but we need to think of quality of life.
 
As always, thank you to everyone for your love and support.  I am not sure if many of you have looked at the links.  But if you visit www.askaboutaimee please look at her section "What is ALS?" and read her unofficial version called "The Roommate."
 
Love and Cure ALS,
Leslie
 


Posted:  5-20-10, by Leslie

I just want to update everyone on Curt's condition.  The x-rays taken this morning show that there hasn't been any further improvement in Curt's lungs with the pneumonia.  They will continue trying to fight it and Curt will need to remain in the hospital over the weekend.  If the pneumonia doesn't clear up, we may need to make other medical decisions, and he may need to get a tracheostomy.  Curt is a fighter and we know we will need to face that choice at some time...but he's doing his best to win this battle with the pneumonia and not have to head down that path at this time.
 
Cure ALS and thank you for being there for us,
Leslie