A Simple Timeline

A Simple Timeline...

March 9, 2014- Admitted to St E with minor symptoms (on eve of move from house to condo*)
March 10- Guillain-Barre diagnosis and progression to full paralysis and intubation
March 12- Transfer to University Hospital NSICU
March 12-26- NSICU at UC
March 26-27- Brief stay at LTAC- Drake Hospital at Christ
March 27- Emergency surgery for bleeding trach, transfer to SICU
March 28-April 14- SICU at Christ (pneumonia and PE treatment)
April 14-19- MICU at Christ
April 19th- Transferred back to Drake Hospital (at Christ) ROOM 3083 (Easter weekend)
July 31- First time outside in 21 weeks
August 25- First meal in 5 1/2 months
October 16- 67th birthday at Drake
October 31- MICU at Christ for treatment of pneumonia and MRSA infection
November 17th- Return to Drake Hospital (at Christ)
Thanksgiving-Christmas-47th Anniversary- New Year 2015
January 17th- Hematoma (dealt with for about a month following)
March 19- 2 weeks off the ventilator! Trach capped for first time ;)
April 4&5- Baptism service and Easter
April 20- "So long" party with Drake staff
April 23- Move to Providence Pavilion rehab center in Covington, KY
May 26- June 10th- St E hospital (trach out, MRSA treatment)
June 10th- moved to Gateway Rehab in Florence, KY (feeding tube removed)
July 2nd- moved to Rosedale Green in Latonia, KY
August 8th- first time sitting in the seat of a car in 17 months
Oct 16th- 68th birthday party at Rosedale
November 26th- Thanksgiving with family+ at the Rickerts
*November 27th- first time in condo since purchase*
January, 2016- began using a motorized wheelchair controlled by head
July 10- move to HealthSouth rehab to prepare for move to assisted living
July 28, 2016- moved to Elmcroft Assisted Living in Florence, KY. After 871 long nights apart finally sharing a roof with wife again!!
August 2018- moved out of Elmceoft. Steve to Emerald Trace. Nancy to the condo.

Friday, September 26, 2014

Heading out on their date

https://m.facebook.com/story.php?story_fbid=10204901466641764&id=1393065701

Update-end of September (by Nancy)

The last couple of weeks have been about breathing and technology to connect Steve with the world outside his hospital room.  Thanks to Kristy, and new recruit for the “tech team” Sam Slayden (friend from church), Steve now has internet access and two choices of mouse control, the Camera Mouse that Kristy installed and an antenna mouse attaching to a headband that Sam rigged up.  Thank you both for hours of devotion to this cause. Steve will be accessing it more and more as breathing becomes easier!

And it is!  With some wide swings in time on the trach collar, he now is hitting 12 hours in a row more consistently.  This means that he just has the machine blowing extra oxygen into his trach.  This can also be accomplished with a portable oxygen tank for the times he is helped into the wheelchair.  Much less in machines and tubes to fight through!  So yesterday he had the opportunity to sit in the wheelchair and we went out “on our own” – just him and me and the oxygen tank, around and around the unit halls.  The respiratory therapist kept a watchful eye in case we dared go through the unit doors to exotic places!  AND during this time we were able to talk, due to a special speaking valve that can be inserted into the trach collar.  I put it in and took it out several times yesterday!  Can the laser light and alphabet chart soon become obsolete?  Please, Lord.

So many of you prayed specifically for talking and swallowing and both have come!  Steve got cleared for soup and jello yesterdayJ  This, in addition to the pureed food he already has to choose from. Please now pray with us targeting the finishing of getting off the ventilator and for his arms and hands to move!  Needing to move arms and hands is one of Steve’s biggest  physical and emotional challenges right now. Thank you!

One more praise for good news…..case manager, Chantelle and Dr. Krause persisted in getting Steve set up to see a neurologist outside the hospital and an opthamologist (he still has double vision)!
The neuro appointment is next Thursday the 2nd at 9:00.  He hasn’t been strong or stable enough to go to such appointments until now.  He will go by EMT van with equipment on board.  Specifically, we hope the neurologist can renew our hope and patience for the return of other body functions and help us make sure we are doing all we can for him.

Thank you for standing by us and doing so much to support with prayers, cards, calls and visits, even after six long months!
Nancy and Steve


Sunday, September 14, 2014

Super excited about Zeros and Ones - Geek Speak by Kristy Rickert

My sister, Kristy, is a computer wiz. She has been leading the charge to get Dad back on-line and out on the World Wide Web. Here is her blog about their computer adventures on Saturday...
After working with Becky and Steve and doing some additional research with the Invotek Safe Laser System, it became clear that its capabilities were primarily designed to act as a simple keyboard for spelling. Steve’s current system of pointing at letters on a poster board with a laser already accomplishes this for his purposes. 

Although some of Invotek’s end-users have used the system to access the Internet, we confirmed this was limited in scope and could be somewhat difficult due to requiring “split attention” (the user points the laser at the keyboard while trying to move the cursor on a separate monitor screen).  
So we started the search for a new solution – one that could give Steve the full ability to use his computer. Not quite sure what was available to know what we needed, the searches on Google may have seemed far-fetched. Some initial search results returned complicated machines with incredibly hefty price tags. Then, and I still don’t know how I arrived at the page, our prayers were answered and up popped a treasure-trove of software designed specifically to help people operate computers when they can’t use their hands. 
The main program, called “Camera Mouse,” was designed at Boston College and is being used successfully by people all around the world. It uses a webcam to track the movement of your head to control the mouse pointer on a Windows computer. Clicking can be done by making the mouse pointer dwell over a spot on the screen (after first turning on Clicking in Settings). 
The website for Camera Mouse includes a Downloads page that has dozens of links to software programs written by other people and companies that work along with Camera Mouse to allow users to fully operate their computers. They even have games for children. And . . . wait for it . . . they are completely FREE!!!!  
I was able to download and try many of the programs before deciding on just a couple to use to assist Steve. If you have a windows computer and a webcam, please feel free to download and try them yourself. It is fascinating technology! 
Here is the list of applications Steve now has available for his use: 
Camera Mouse 2014 – Main program. The latest version, which now works with Windows 8, just came out last month (August 2014). Steve’s laptop runs Windows 8.  
ClickAid - allows for right-clicking, dragging, double-clicking  
Midas Touch - a free onscreen keyboard program for spelling and speaking messages (this could replace the poster board and laser pointer) 
Click-N-Type virtual keyboard – an onscreen keyboard that allows you to use Camera Mouse to type into Notepad or Word or email or an Internet browser. Steve has add-ons that display the keyboard in bold text and uses a predictive word list. 
Aliens (Aliens and Paint) a simple shoot-the-aliens video game program. We used this to test Steve’s range of motion.
Today, Steve felt well enough to work with the programs. Within the first 10 minutes, he was adjusting some of the settings himself and requesting others. Then Nancy and I watched him open Internet Explorer and perform a Google search for “GBS.” For the first time, Steve was able to search on this illness that has taken control of his life for the past 6 months. It was a very moving moment to watch!

My husband, Patrick, asked if this means everyone can now start communicating with Steve electronically. I told him that it might be wise to give him a few weeks since Steve has 2300+ emails in his inbox to catch up on first. :) My hope is that initially, these new tools will give Steve access to the outside, and then in due time he’ll be ready to communicate back.

As a techie, I get energized by new hardware and software – much like a kid on caffeine – and today will be one I will long remember! Thank you, Nancy, for allowing me the opportunity. Your help desk is available!

Saturday, September 13, 2014

Weekly update (by Nancy)

This has been a somewhat typical week of ups and downs for us. Steve developed a lung infection, however, they got after it right away with antibiotics and he is getting on top of it.

He has successfully worn the trach collar two hours Thursday and three hours Friday. When he does this he is off the ventilator! Only extra oxygen is provided through a tube. 

During one of the times of wearing it he also had PT/OT and sat on the side of the bed almost 20 minutes, mostly without support. Charlie was part of the therapy team this time. Those who know Charlie know how addicted he is to laser lights. Steve has one on his head to spell with. Charlie entertained everyone by skidding around the room as Steve moved the light. First time I have seen a full blown smile from him in 6 months and I could tell for a few minutes he forgot he was a patient.  Just a man playing with his dog. 

Tuesday, September 9, 2014

Riding the waves

Six months ago today our family was set adrift on a new course. Over a course of only 36 hours, GBS took all movement and old-world familiarity from Steve and Nancy. For the past 6 months they have floated along looking for any signs of land. Was that a head shake? Was that an eyelid flutter? Can he truly open and close his eyes? Will he pass his swallow eval? Can we master this new communication technique? Can he wean for 24 hours? Was that a twitch in his arm?! (Answer to all questions-yes!)

We have no idea when the boat will reach land (and we pray that there are no cannibals when we get there!) but in the meantime, we give thanks for those that send postcards and flares, that pull their boat up alongside ours, and pass provisions into our hands. We also try our hardest to keep our eyes focused on the Lighthouse.

Rend Collective - My Lighthouse (Official Video)

http://youtu.be/JPtIv2lnkTY

Psalm 107
1 Give thanks to the Lord, for he is good;
    his love endures forever.
2 Let the redeemed of the Lord tell their story—

23 Some went out on the sea in ships;
    they were merchants on the mighty waters.
24 They saw the works of the Lord,
    his wonderful deeds in the deep.
25 For he spoke and stirred up a tempest
    that lifted high the waves.
26 They mounted up to the heavens and went down to the depths;
    in their peril their courage melted away.
27 They reeled and staggered like drunkards;
    they were at their wits’ end.
28 Then they cried out to the Lord in their trouble,
    and he brought them out of their distress.
29 He stilled the storm to a whisper;
    the waves of the sea were hushed.
30 They were glad when it grew calm,
    and he guided them to their desired haven.
31 Let them give thanks to the Lord for his unfailing love
    and his wonderful deeds for mankind.
32 Let them exalt him in the assembly of the people
    and praise him in the council of the elders.

Wednesday, September 3, 2014

Labor Day Weekend Updates (from Becky and Nancy) and Geek Speak (by Kristy)

From Becky:

It was wonderful to see Mom and Dad again. Since school has started back up for Tim and me, it is difficult to get down as often but we are working out the details :) The kids and I got to spend a short visit with Mom and Dad. Dad was very calm and relaxed on Sunday, and was very conversational. He talk/spelled directly to the kids, sharing memories with Diksha about dissecting frogs in Biology when he was in Middle School. He got to see some of the music scores that Joshua has created and was really interested in Joshua's "goings on."

It was as if we weren't in the hospital room with all of those wires. He was definitely "Dad." Short conversations Mom and I would have between ourselves, like, "Where's the button?" or, "What was I looking for?" were immediately answered by Dad. He was helping just like he always has! It was really sweet. Maybe you had to be there, lol - the point is, Dad is really still "here." People often ask, "Is he aware?" to which we often laugh and emphatically answer, "YES!" Some days it truly seems as though there are no wires, or beeps, or hospital sheets. Just us and Dad, hanging out. I love those times. We also watched the WEBN fireworks on TV :)

His new machine (Safe-Laser) is AMAZING. Kristy and I worked to get Dad set up with it on Monday. It will not only allow him to use a laser to "type" thoughts, but it will also allow him to surf the internet, Skype, and operate the TV! All with a laser!! Simply amazing. My techy mind is still geeking out over it! I can't wait to go down again and see the progress Dad has made in figuring it out! Knowing him, he'll have mastered things on it that we didn't even know were possible! :) That's my dad....he's brilliant.

-- Becky :)

From Nancy:

It was a good week with steady progress, seen and unseen. Steve sampled more menu items and it is so good to be able to read off real choices. He enjoys turkey with gravy, mashed potatoes (with gravy), most all the desserts, and cranberry juice (thickened). The hamburger without bun...let's just say hamburger needs texture....mustard isn't enough :)

Steve sat up on the side of the bed, so good for core muscles, for a stretch of 7 minutes which is a new personal best. He also has made the wean goal of 16 hours and now has a new one of 24 hours continuous. The step after that is to be on trach collar for short periods which is when he is off the ventilator with just extra oxygen passing through.

He was given another new bed that has a thicker mattress. Unit directors Pat and Brenda are always looking for better. Steve likes this bigger bed and joked to Dr. Krause that he has a "big butt" that sinks down in regular mattresses! (He actually has lost 30 lbs since entering ICU.)

We so enjoyed a visit from Becky, Josh, and Diksha on Sunday. We all watched the Riverfest fireworks on TV in Steve's room. He was so in the conversation (laser enabled) that it was almost like we were at home. Of course, Charlie was there too :). Several funny things, one being when I commented that the closed captions interfered with the fireworks and he quickly said, "Change it on remote!" Another time he spelled, "Cube on my chest." Becky had been feeding him ice chips in the darkened room:)

The Invotek Safe laser System that I rented for Steve arrived Friday! Sandy Banta found the company on the internet. Flora's sister, Kristy Rickert, spent all day Monday with assistant, Becky, beginning the setup, configuring keys to Steve's preferences. I will kick this blog over to Kristy now to tell you about what we think it will do for Steve.

Thank you, Rick, Connie, Sandy and Fred, Lee and Karen, Bob and Sherry, and Lee Llambi, and Dave Myerose, for spending time with Steve this week. It means more to both of us 
than we can express.


Geek Speak (by Kristy Rickert)

Steve is in the process of getting set up with a product from Invotek, called "Safe-Laser System." It is a keyboard that can be operated with a laser to allow Steve to spell out words and sentences on a small two-line LCD screen at the top of the keyboard. Here is a link to the product page:  http://www.invotek.org/products/safe-laser-system/.  

In addition to its primary function mentioned above, we are hopeful we can also give him the ability to pull up some websites by connecting the Safe-Laser System to his laptop. Basically, the laser keyboard becomes a wireless keyboard for the laptop. However, in the world of point and click graphics, the process may be a little tedious. To fully imagine the hurdles, try to use your desktop computer or device without touching a mouse, mousepad, or touch screen. All screen movement needs to be handled by keyboard commands.

The Safe-Laser System allows for some simple customization and Steve has been able to participate in the decision process as the keyboard is adjusted for his use. We are sure that he will be one of the best consultants for Invotek in the near future!



(Flora here - THANK YOU, Kristy! She spent almost 12 hours at the hospital on Labor Day working to get this system up and running. She continues to work on issues from home, including writing macros.) 

Monday, September 1, 2014

Labor Day

To all of the wonderful healthcare providers who are reading this blog,
THANK YOU! THANK YOU! THANK YOU!

Thank you for all the times you have patiently turned Dad and helped him find comfort.
Thank you for all those times that we come to the doorway and report "He needs..." and you come to take care of it.
Thank you for celebrating with us.
Thank you for grieving with us.
Thank you for keeping him clean and comfortable.
Thank you for working together as a team.
Thank you for suctioning him, medicating him, helping him sit at the side of the bed.
Thank you for taking the time to spell with him.
Thank you for emotionally investing in our family. (Dr. Krause, your tears did not escape my notice the other day. They mean the world to us. Thank you for being a person and not just a white coat.)
Thank you for working on holidays and weekends and overnight and extra shifts!
Thank you for problem solving and finding answers to the challenges that crop up.
Thank you for taking care of Mom.
Thank you for welcoming Charlie to the unit.
Thank you for answering our endless questions.
Thank you for addressing issues that aren't medical but are vitally important - like getting him out to enjoy the sunshine - we know that taking him outside takes a lot of planning and man power and we are sooooo appreciative.

We notice your actions and we are very grateful! Happy Labor Day!

Flora and Tim, Becky and Alex


I asked Mom, via text, if she had a couple of thank yous she wanted to share. I very quickly got back this long list. I'm just gonna post it the way she sent it. Sooo many people doing such good work!...

Tara bought me pizza. Tennile came into work thinking there has to be a way to get Steve outside today. Erin asked yesterday "Steve, was it a good day?"  (He said yes).  Respiratory therapists Dave, Frank, Frank (night), Bob, Julie, Tennile, Ann, Lisa, and others are always ready to help with all things breathing. (Too many staff to name as I'll leave so many out!) Dr Krause, Pat, and Brenda's dedication to making this place one of continuous improvement and going the extra mile to find a way to get an ophthalmologist consult, a new bed (twice!), neurology consult, etc. Then there is a rotating team of pulmonologists, warm and responsive desk staff - Donna, Denise, and Geraldine,  Speech therapist -Lindsay, head of respiratory - Eric Hurd, OT and PT - Judy, Julie, and others, case manager - Chantelle, visiting docs from wound care, medication review, dietary, kidney team. And a tireless caring staff of PCAs, day and night. There are really too many instances of "Above and beyond" to count as I look back to Easter entry date.

A little encouragement for Dad to find

Steve,

Your fortitude and strength have been a testimony to me and many others. I marvel at the love that surrounds you from family and friends. My husband, Lee, and myself continue to pray for your complete recovery and always look forward to the updates on your progress. God is so good.

Lee and Dawn Schamp
(Tucson, Arizona)


Dear Steve,

We so enjoyed coming to see you at the hospital.  We are so happy to hear you are now able to eat real food. HURRAY!!!  We worked very hard in Harrison, Ohio after we had seen you. Three other couples came to help us remodel a 1863 farm house for a couple heading overseas as missionaries.

Now we are finally home again and ready to rest.  We send our love and prayers to you for speedier nerve cell regrowth.  We will celebrate every new victory with you.

Love,
Margo and Dave
(Milwaukee, Wisconsin)


Hi Steve,

I am so excited that you are going to be able to read notes on the internet....It is simply amazing to me to learn what is possible. You have come such a long way from that day Bob and I came to the hospital to see you on June 1. In just 3 days, we will be marking the 6th anniversary of the day Bob came home from his hospital stay.

I read this morning in a note from Nancy that you are finally able to once again taste real food. I am sure that turkey dinner seemed just like Thanksgiving!

Also it is amazing  that you are able to assist the doctors and nurses in learning more about how to treat GBS patients and in communicating your own feelings and ideas to them.

Your GBS experience has been much like Bob's, but also has had some differences. I am looking forward to the day that you call us on the phone and tell us in your own voice that you have been able to stand and take your first step!

Can't wait to see you again! You have some hard work ahead of you, but you can do it!! GBS, as terrible as it is, has made Bob and I stronger than ever in our faith, and in our love. We have found a new purpose in our lives as well......reaching out to other patients with encouragement, friendship, and prayers. We have met so many others that understand what it means to go through this journey.

Have a wonderful day and week ahead. Hoping for continued milestones for you in the days and weeks to come!!

Hugs
Sue Pinney
(Cary, North Carolina)


Hello Steve,

Wally and I have been praying for you and Nancy almost daily.  I am amazed by your determination and the power of prayer.  I know God has been with you every step of this journey and you will have a powerful testimony after it is over. You and Nancy will be sailing again soon, I just know it.
Take care Steve. We look forward to talking with you soon!

Sue Ann & Wally Walker
(Cold Spring, KY)

Steve and Nancy,

 Praying for you !!!!!!!! What a journey you are on! We  follow the updates daily and I share them with mom and we are so happy for you with each little evidence of progress. My friend Nora (a nurse, my co-worker, and also my Christian sister at our church) went through GB a few years ago and so I go to her for explanations and understanding of the "patient" and personal side of your journey. I love you both (mom sends her love and prayers too)!!!!

Love,
Cousin Beth
(Wake Forest, North Carolina)