Big goals/ New email (by Nancy)

Steve is now steadily chipping away at his goal of being off the ventilator. After getting his medicine changed by Dr. Krause, his anxiety over learning to breathe again has lessened greatly. He is now back on track and heading toward 16 hours at a stretch!

Sam Slayden has Steve set up on a new email account. Apparently, I tinkered with his old email too much and we can’t retrieve his password. Anyway, the new email is slparsley@microbuzz.com. Those of you who wrote “welcome back” emails a few weeks ago….those are still there for Steve to read when he can. Right now, he is often too sleepy or concentrating on breathing and doesn’t go to the internet much at all. But expecting that to change.

Steve will have another swallowing test this week as he did well in managing mac and cheese, beans, and cut up pears.

It was wonderful to have Tim here for a weekend, followed by Flora for the doctor visit on Oct 2, and then Becky last weekend. All these visits cheered Steve so much and were such a comfort to me. Thanks also to friends who visited over the last two weeks and the gift of a special “concert” by two of our extended family, Lydia and Mason Taylor, who sang “Life Goes On” to Steve last Sunday when they visited with Lee and Karen (Flora’s parents).

I am looking forward to visiting friends, Sandy and Larry Gabbard, in Tennessee, for two nights later this week. Thanks to those who are visiting Steve during that time. 

Love,

Nancy

Neurology appointment October 2nd

On Thursday, Dad traveled by ambulance to the neurologist's office for an appointment. He was accompanied by 2 EMTs and a Drake RT. Mom rode in the front seat of the ambulance and I met them there. This already-complex situation became even more complicated when there was a fire next door at UC Hospital which created a detour.

The appointment itself was rather straight forward: history and physical assessment followed by a recommendation for a follow-up EMG at the end of the month and a follow-up appointment with a Neuromuscular specialist.

Dr Karamchandani stated, "There is not an order that things come back online. There is no way to predict the timeline. Continued improvement is always a good sign. As a general rule we won't know the full extent of recovery until 1 year to 1 ½ years out." He repeated multiple times that Dad is showing good improvement. He encouraged Dad to continue to be aggressive about weaning and stressed the importance of supportive care in preventing bed sores, infections, and blood clots.

Dad had to leave 2/3 of the way through the appointment because the transporters had run out of oxygen in their tanks and needed to get him back to the main supply in the ambulance. Their vent system felt different to him and he needed to be on 100% oxygen the entire time (normally on 30%). Dad was rather uncomfortable on the gurney and didn't have much to say during the appointment, even though we traveled with his laser light and big letter board. Mom and I remained behind and finished the consultation. Jennifer (MA? PA?) made the follow-up EMG appointment and told us, "I believe that I have heard of Mr. Parsley before but not by name...was Ben Kleindorfer working on a call light for him?" We are glad that others are investing in his story. I asked the Dr. if there was any possibility of his being in a clinical study or being the subject of a research paper. He approved of the suggestion and said he would definitely look into the possibility.

When he was settled back at Drake I said, "I bet you never thought you'd be excited to get back in this bed," and he smirked. I asked him what he thought of the appointment and he spelled, "I only listen credibly to those who forecast a 3-week cure. I was sort of counting on dancing on my birthday (Oct 16th), so much for willpower. I am not impressing them with my breathing yet. Actually, there were three days I fell back to vent but otherwise I was off vent. I could do full days if it weren't party central. My primary goal of late is to improve my status."

I had to return to Fort Wayne shortly after getting him settled, but told him that now that I've carried his spare medical supplies in my purse, our relationship had jumped to a new level. He shrugged and smiled and told me that he was glad I had come. Glad to be there, Dad. Keep up the hard work and prove them wrong. ;)

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 2^nd 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

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). 

(http://www.cameramouse.org/about.html)  

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! 

http://www.cameramouse.org/downloads.html 

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!

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. 

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.

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.) 

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)