Thursday May 30

From Nancy:

Sometimes it looks like my guy is not still "in there" and then I'm happily reminded that his mind is just as sharp as ever:) Like when I told him I was planning to travel to Ft. Wayne for a night to see our grandson's play and he was quick to nod "yes, yes!"  In spite of his current limitations physically, the heart of my guy is always giving and wanting the best for me.

The "car guy" is also still roaming around in there. The other night I decided to reminisce with Steve about our early marriage and our memories. I was recounting the time when he got his first car that he was so proud of. I even have a picture of him hugging it. When I was telling the story I got the kind of car wrong twice and after his shaking his head "no" vigorously, I finally came up with "Barracuda" to which he nodded and I could almost see the thought bubble above his head, "Finally!"

Thank you, Sue and Dave Giegler, again, for keeping Steve company yesterday morning while I was in Ft. Wayne -- especially while he was in the sling chair. Flora has already mentioned the kindness of Rick and Connie concerning Rick's visit and keeping our dog. Charlie helped them catch a bat....well he kept the bat on the move anyway 'till it could be trapped!

We continue to watch and pray for signs of swallowing and look for even more progress getting off the vent so he can work on speaking. We are thankful to see his eyes looking back at us:)

I am looking forward to our Becky returning tonight to spend the weekend. - Nancy

In his own words

We just said "So long" (which is Steve's favorite and customary send-off) to my parents and Nancy after their brief but sweet overnight visit with us here in Fort Wayne. They came to enjoy the 5th grade play "Aladdin" in which their collective grandson, Aidan, shined as the Narrator, and Tim's set piece (The Cave of Wonders) wowed the audience. The grandparents have since renamed the play "The Narrator visits The Cave of Wonders"

It was with a bit of trepidation that Nancy left Dad for an overnight trip. Thankfully, Rick and Connie Thomas stepped in to sit with Dad and keep Charlie. (Thank you from the Jr Parsleys! What a gift!)  Rick even helped Dad spell and send a special message. "Aidan, I know you will be the "star" Nancy, glad you are there. Love to you all"  See the picture of his selfie in the picture column---->

His message brought our entire dinner theater table to tears. This syndrome has robbed him of so much, including his ability to share loving messages with his family, because of the effort required to spell each word. They say that each person has only so many words to use each day (I think the joke is that women have like 100,000 and men only 10,000) and right now dad has to use his words to express simple and basic needs. Seeing his message helped us all see past the sickness and engage with our loving family member that is so often just out of reach.

We missed him and look forward to the day that he can come visit, eat some banana pudding cake with us by the pool, and watch Aidan's video with Evy on his lap.

This past week

From Nancy:

A week of Steve holding onto the progress he's made in weaning off  the vent and also gaining more use of his eyes. It means so much to be able to look into them as we "talk/spell."

He sat in the "sling chair" again which allows him to recline as much as he needs to. He was able to sit by the window with the aid of a portable ventilator and he went two hours this time! They will probably offer this twice a week, increasing how erectly he sits.  

Another highlight was tasting food for the first time since this ordeal began. It was orange sherbet and while he can't swallow yet and it has to be "retrieved" by speech therapist Lindsay, Steve enjoyed it so much.

Tim was here for two days and covered a lot of ground between visiting his dad, taking his sweet mom out for a belated Mothers Day dinner, and helping at the condo. Leaking faucets fixed! Storage shed is emptied! And all of Steve's woodworking equipment is stored in Ricks dad's barn.

Thank you, Tim and Rick Thomas, for some hot, heavy labor that postponed a decision that is Steve's to make.....when he is ready:). Also, thank you, Dave Giegler, for phase 1 of emptying the storage shed:)

Friends and family, you continue to make this dark time shot through with sunshine!

Happy birthday, Becky!!

Happy birthday, sweet Becky! You are the best daughter/sister/sister-in-law/aunt/wife/mom/teacher anyone could ask for! You wear lots of hats and you wear them well!  I know that you are the apple of your dad's eye. I posted some pics of some of your special moments together. It is easy to see how happy you both are in each other's company. We love you!

Weekend Update from Nancy

Hi and thank you for continuing to check in on Steve's journey.  As you have seen, there are fewer blog posts as we have entered a phase in the illness where the progress can mostly be seen week by week.  We trust that the Lord is working mightily below the surface! Knitting nerves back together, unseen but still as real and as vital to recovery as breathing is to life.

The OT, PT, respiratory and speech therapy are consistently offering new goals for Steve to try, including being weaned from the vent with only pressure support for up to 32 hours and working with him to start sitting up.  This past week they gave Steve the opportunity to sit in a sling chair that let him recline at an angle.  There was a lot of preparation on their part to get him into the chair.  Steve was able to sit in it and look across the room facing the window for 30 minutes without getting dizzy.  I always knew he was strong to face fear and push on but never more so than now. I am so proud of the fight he is putting up!

We can't express how much the visits from family and friends help, as well as the many other ways you show your care. The visits from Tim and the two vitamin E's last week (Emma and Evy) was so wonderful and then followed by Becky and Josh and Diksha on Friday.  Becky had lots of time bedside, as did Tim.  We are so so blessed by how they manage to be here so much and not miss a beat at home and work.

Sally Lowitz, the liaison for the GBS foundation has come by twice.  She invited me to join her for lunch with a GBS survivor named Debbie and Debbie's husband. Debbie came down with GBS in April 2013 and has a very similar story to Steve's.  She and Brian experienced much of what we have so far.  She is recovered and uses a small push walker with a seat for support when she stands or walks.  Debbie, Brian and Sally came to Steve's room after lunch. He was sleepy but did get to "talk" with them a minute.  We look forward to Bob and Sue Pinney from Raleigh coming by June 2 to see Steve.  Bob had an equally severe case in 2008 and has recovered. For both Bob and Debbie it was around a year for recovery.  Even though GBS visits only about 1-2 people in 100,000 we are finding some who know what it is to walk this path and they and Sally are so available to us and reassuring.

Thank you again to dear friends who take time to visit and step into the unknown with us.  We know it is out of the comfort level of some of you but you come!  Many of your calls are so timely, as are those of family, that I know they are God-prompted when I feel like I'm scraping bottom.

Lastly, thanks also to the best boss one could have (yes you, Lisa Denham at Kenton County Public Library) and  special co- workers that continue to support with thoughtful gifts and donations of sick time.  It was so good to be there last week as I wrap up loose ends preparing to retire in a couple of weeks.  It has been a great run of 11 years of growth in the best public library in Kentucky!

- Nancy

Happy 41st birthday, Tim!

Tim, we all know how very proud your dad is of you. He has said it on many occasions, most recently taking the time to spell it out letter-by-letter during his stay in University hospital's neuro ICU. He spelled "I am so glad and proud of the way you have stepped as the patriarch of our family." Each letter was an effort for him and an indication of how very much he loves you!  We all do. You are a good good man. You make the Parsley name proud. I hope our boys grow up to be just like you and reflect the heritage of strong, godly, kind Parsley men that they have learned from. Happy Birthday!

Happy birthday, Diksha!

A very "Happy 12th Birthday!!" is wished to Diksha Joy today!! You truly live up to the middle name that your parents gave you! You bring such joy wherever you go!! Just looking down the pictures on the side of the blog we can see how much happiness you have been able to bring to your grampa even in the hospital - art, music, hugs!! We are so delighted to have you as a branch on Nana and Poppa's family tree!! We love you!!

Dream or reality?

Last night Tim dreamed that he was driving somewhere and his dad was riding along in the passenger seat talking and moving his arms.

Sometimes the bizarreness of the last 9 1/2 weeks (Can you believe it has been that long?!) feels like an awful dream that we just can't wake up from. This feels like an altered universe with time that moves slower and interactions that are scattershot. Even Dad has admitted that he is disoriented at times and struggling with hallucinations. Hallucinations during hospital stays are pretty normal - time is altered, sleep is upside down, medications make you groggy, and specifically in Dad's case - sensation input is minimal. He has been relying on his sense of hearing primarily with few schedules (seasonal, weekly, daily), different tastes or smells, or changing visual clues to orient him. Having visitors and Mom nearby to talk to him about things that are real keeps him tethered to reality. We all need that - I was sleepwalking last night and needed Tim to reorient me to where I was.

I plan on spending the afternoon rereading the CaringBridge page that Bob Pinney's nurse daughter, Stacey, kept for him while he was hospitalized with GBS. I want to write down the timeline of events that Bob and Sue encountered on his way to health. So much of Bob's story is similar so far that it will be nice to have a roadmap of sorts. I specifically remember the story of how Bob was acting strange and agitated and told them to "take the money." Weeks later he was able to tell them about a hallucination he had where he thought they were all in the middle of a bank robbery and he was trying to protect his family. We are so thrilled that Bob and Sue will be up from South Carolina visiting her daughter in Lebanon, OH, this weekend and are making time in their trip to visit with Mom and Dad. Having the hope of Dad traveling again one day is bringing lots of strength to his present situation.

Dad was able to try the sling chair yesterday, and lasted for 1/2 hour. I believe he got a chance to see out the window, providing a few more clues to his present circumstances - it is green and spring outside, he is inside a building on the third floor, etc.

Mom told me that when Dad asked about his phone and Becky gave it to him to hold, he was very adamant that it was not his phone. He kept insisting and telling them that his phone was light blue. I told Tim that story and he said, "His is! They only had blue iPhone 5c's when he upgraded!" Tim told Mom and she had already realized that and told Dad he was right. She took the cover off and showed him his blue phone inside that black case. Some things you just know, like your personal phone. ;)

Mother's Day Weekend- a post by Becky

Today's post is by Becky...

I took the kids with me to visit this Mother's Day weekend. We had a great visit. On Mother's Day, we had a nice lunch with Mom on the deck and then we took her to Riverfront Park and all five of us rode in a surrey. It's a four person bike. Charlie rode in the basket at the front :)

Then we went to see Dad at the hospital. Diksha had seen him a couple weeks earlier, but Joshua had not seen him since around Christmas time, long before he got sick. I wasn't sure how Joshua would handle it, since he was wary to see Dad in the earlier stages. We got there Friday evening, and Joshua went right up to him, said "Hello" and started to talk to him about all of his "goings-on." He needed no prompting. I was very proud. Dad seemed to really enjoy seeing them. 

On Friday, they tried to take Dad off of the ventilator for a brief period and just pass oxygen through his trach. He lasted for about 30 minutes, but his CO2 levels became elevated so they returned him to the machine. He got pretty worn out. On that same day, OT/PT helped him sit up on the edge of the bed (with legs hanging over the edge). They said he did not tolerate it well, was really dizzy, so they laid him back down. Side note - well worth mentioning! - Dad began weaning on Thursday morning and was still weaning as of Sunday morning before church! That's about 72 hours!!! Then RT said he was experiencing some pain in his chest with the breathing, so they took him off to give him a break for a while. RT Bob said they would put him back on Sunday evening if he felt up to it.

Needless to say, with all of that going on, he was quite sleepy all weekend. He talked on Saturday about wanting to be sitting in a wheelchair, and kept looking at the bottom left of his bed (eyes AND head turn) as if to say he wanted it right there. He is not ready for the wheelchair yet but the OT/PT said they might try to put him on a "sling chair" on Wednesday. This chair can recline like a bed, or sit up like a chair. It would possibly allow him to leave the confines of his room. Dad seems really interested in doing that.

His eyes are looking less red. His left eye seems to be closing a bit more. He still has a lot of difficulty seeing and feels that if he didn't have the eye drops in he could focus more. Speech therapy is working on creating a laser attachment for his reading glasses for when he starts to move his head more and his sight gets better. This will allow him to point to things he needs with more precision. 

RT tried to check for a gag reflex, thought they felt one, but then couldn't get it to go again. Dad said he thought he felt like he was a little more than before, but it's hard for RT to tell. Once the gag reflex begins to return they can start giving him things with flavor to try and stimulate a swallow. 

Baby steps. Waiting. And more baby steps.

Dad has been enjoying visitors but also likes peace and quiet. When people come they feel the need to talk and entertain him, but he also simply likes people just "being there." While Mom, the kids, and I were there, Gieglers stopped in for a wonderful surprise quick visit after church/lunch. We were chatting with each other and Dad, then Dad told us he wants us "ALL OFF." LOL!! We were wearing him out I guess ;)

Some of the things he said/wanted/did this weekend:

"WHEEL(chair)"

"CELL PHONE" - wanted to hold it :) Does it feel good and normal? "yes"

He is doing more head turning WITH eyes tracking - down to right and down to left, also up to the right. It seems as if he is clearly trying to tell us "down there" or "up there," but without spelling. I have to say, it helps me anyway! :)

Other things he spelled were some of his regulars..."WHAT IS NEXT STEP", "WHEN CAN WE GO TO CONDO," etc.

On Monday, his OT Judy said she got a smile out of him in the early morning! We asked him to try it again and he was able to move a muscle on the left side of his face! These were NOT the same movements you can see when he is moving his chin up and down and side to side. It was crystal clear that he was, in fact, trying to smile :) Won't that be the best day????

Becky :)

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Thank you all for loving STEVE and NANCY so much!! ;)

A Quick Visit With Dad

Tim writing this time:

Sorry the blog updates are less frequent lately.  It seems we’ve entered a slower, less drama-filled season of this ordeal since moving Dad to LTAC on Easter weekend.  That said, the daily challenges are just as real and relentless as before.  With the semester finally wrapping up, I was able to make a quick trip to Cincinnati yesterday and today to see Dad and give Mom a little relief.  Relief is spelled: E-V-Y and E-M-M-A, both of whom tagged along and spent the afternoon with their Nana, getting her to take them to the zoo, out for ice cream, and snuggling in for a tea party before bedtime at the condo.  A double-dose of “Vitamin E” for Mom!  Even though Mom spoiled the girls, I think she got more good out of it than they did!

Meanwhile, I was able to spend some time with Dad.  Overall, he is doing better it seems, though the changes are coming very slowly and slightly.  When we last saw him two weeks ago, he could open his eyes a little (mostly just his right one) and slightly shake his head left/right, as well as his continued ability to move his jaw to communicate.  As of now he is able to open both of his eyes almost fully, though closing all the way is hard.  His head can shake back and forth much stronger now, especially when he’s emphatically trying to say, “No!” about something.  He is also able to nod up and down slightly.  He continues to improve his weaning off the vent, and his heart rate and blood pressure have stabilized – so hopefully this means his autonomic functions are returning to normal. 

Perhaps more encouraging, is that even with these slight improvements, Dad is able to be more of a “participant” in this process.  He is able to communicate clearly when he does or does not want something from the medical staff – for example, letting them know that he did not want a new picc line due to previous battles with infections through that line, but rather, preferred an new, extended IV option that can last up to 29 days (less daily pokes!).  Even though he is having a very hard time sleeping at night, he was also able to deny an increase on his sleeping aid since he doesn’t like to be knocked out at night.  These feel like small things, but if he is asked, he is able to give direction to his caretakers and be more involved in decisions about his care.

Of course, he needs to be asked – which we find is a constant thing we have to remind various medical staff to do.  Because he has no ability to call the nurse for help, or after being re-positioned say something like, “Hey, this new position is more uncomfortable than before!”, he is at the mercy of whoever is caring for him to stop and ask, “Are you OK?  Do you need anything else?”  Most of his caretakers seem to be on the ball.  However, we are still amazed to find various staff who do not address his basic comfort needs, which can sometimes lead to several hours of unresolved pain or discomfort in the middle of the night. 

Please note:  the staff at Drake LTAC have been really great, with the majority of them being attentive to both Dad and Mom’s needs.  But until Dad gains the ability to call the nurse and speak his needs, he’s at the mercy of not only this awful syndrome, but the varying degrees of support of those around him as well. 

On that note, I want to express again our appreciation for everyone who has stopped by to visit and sit with Dad on the evening shifts.  I know how busy life can be, and it means so much to us that you have carved out time to keep him company and be an advocate for his needs.  This is still a need we have – and in an attempt to make it easier to sign up for an evening spot, there is now a permanent link on the right side bar of this blog which will direct you to the Lotsa Helping Hands website where you can sign up to sit with Steve.  For those visiting with him, here are a few things to keep in mind:

-       Please don’t feel like you have to “entertain” him.  He may enjoy talking, or listening to music or talk shows, but often he just wants to rest/doze in the comfort of knowing someone is there for him if he needs something.

-       When talking with him, try to stick to simple yes/no questions.  I’ve found myself sometimes asking “choice” questions (“Do you want me to get the nurse or help you myself?”), which his unable to answer.  The key questions that are always good to start with are: 

o      Are you in pain?

o      Do you need repositioning?

o      Are you too hot/cold?

o      Do you need the nurse? 

-       If you ask him to spell out something with the alphabet system posted on the wall above his head, realize that he gets tired and confused by this process after about 2-3 words (especially if he has recently been given pain medication and is drowsy).  If his spelling is lost in translation, just ask him if he wants to stop for now and try again later.  Also, he is moving his jaw very frequently now, even when not communicating.  This can make it confusing to decipher whether he is saying “yes” or “no” to a question or letters he is spelling.  Just tell him kindly that his motions are unclear and could he concentrate on giving you a “clear yes or no” to your question. 

-       When he needs to rest, I usually just tell him that I’m sitting right by him and that if he needs something, to just move his jaw up and down rapidly so I can notice and respond.  This works well.

-       Lastly, if you have not seen Dad in a few weeks, be forewarned that he looks pretty rough.  With his eyes open most of the time now, they are red and sagging.  His muscle tone is minimal and he has lost weight.  Looking at the pictures on this blog from before this syndrome hit, it’s hard to process how much this has taken a toll on him.  However, that’s still my Dad in there and he needs us to hang with him until his strength returns…

We feel so blessed by all of you who have helped out already and continue to show your love and support to our family.  Thank you!

P.S. – Notice the page counter on the right:  Let us know if you are #10,000 to view the blog!

Mini Update- May 2 & 3

From my sister Kristy after her Friday evening visit...

He opened his eyes wide and I asked him if he could see me. He said yes. I then asked him if he could nod and HE DID!



Saturday report from Mom:

10.5 WBC
Report on infection:
Urine positive for infection
Rest of cultures not fully back

Made it to 14 hrs on wean Friday and so Dr. Krause set goal of 16 hours for today

More head shaking today
He moved his head toward me and looked at me when I started to talk:)

Chachacha - May 1& 2

Sorry I've been negligent of my blogging duties. The happy blogs write themselves but the harder ones get stuck. I want to be able to post "Yay! Wow! Whoo hoo!" updates all the time but that is just not the case with GBS patients. I recently heard someone say, "Don't think of it as one step forward, one step back, think of it as a ChaCha!" So put on your dancing shoes, friends...

These updates are taken from Mom's texts...

Thursday May 1
"X-ray taken this morning better than last one on 4/19.  More space in lung. I guess they took it because his WBC jumped from 13.4 on 4/29, to 19.5 yesterday, to 23.3 today. They are doing urine, blood, stool, and sputum cultures now. He also had a fever last night of 101 which came down with Tylenol. First urine report does show something going on there.

Dad has asked for anti-anxiety medication several times in last 24 hours. That and the pain med is keeping him from being a decent speller. They went ahead and started him on vancomycin and meropenen today to kill whatever is going on.

Even though we know that there will be these plateaus with downward dips, I find myself discouraged. Wish we could get an ophthalmologist in here but Dr. LaMare says none of them visit hospitals. Maybe they don't think getting credentialed is worth the few patients they would get to see?

On a happier note, I am going to get Charlie tomorrow! The family will be out of town for 2 weeks for the parents to get training for the staffing business they are starting. Dave Giegler started on some shelves in the garage and I planted a few flowers:)" - Nancy


Friday May 2nd
"Dr. Dama (pulmonologist) said the goal to wean 24 hours was a little aggressive (he managed to wean for 14 hours) because of how the breathing reacted. He wasn't able to breathe with much strength. So he set pressure support up to 10 from 5. Will give him more help while he fights infection off. WBC 17 today so the antibiotics are helping while we wait for all cultures. So far there is a UTI and they are culturing the PICC line. So he doesn't have a PICC line now :/

Dr Krause is wonderful. She takes a lot of time and is intently managing his eye issues. She discontinued his eye antibiotic because it seems it wasn't helping and he was possibly reacting worse to it. So now the plan is to keep them moist at all times-with gel tears and cool compresses during day and eye patches at night for 8 hours. She said she was awake half the night thinking about how to help him with this. I told her that I want an ophthalmologist to see him and she is working on it. Right eye is looking a little better...eyes are swollen also so that accounts for some of the alarming look of them.

I made a large picture chart from the small one I got from the speech therapist. I'm coloring it now.  Hoping we can use it when spelling isn't going well - which is the case during this infection and with increased desire for pain meds." - Nancy


I was texting with Becky last night and forwarded her the dates that Tim (or Tim plus family) will be in Cincinnati, and she sent me the dates that she (plus family) will be in Cincinnati and we were happy to see they fit together hand in glove! This is too exhausting for one family member to shoulder alone.

We are also beginning to plan some respite trips for Mom this summer. Life has stopped and yet it is going on at the same time- grandchildren are growing up, seasons are changing, and batteries need recharged. (The first one will be the end of May for her to come see Aidan shine in his 5th grade play.) So we will be adding extra slots to the calendar. Any help with coverage is greatly appreciated.

If you need help signing into the Lotsa Helping Hands site, please feel free to contact the calendar coordinator, my sister Kristy via phone (217) 454-9295 or email kmrickert@gmail.com. She would be more than happy to help you.