Figuring things out

Evy and I (Flora) were able to surprise Dad with a visit on Tuesday and were rewarded by a genuine smile and look of surprise on his face. He had had a very busy day already - he had been visited by the director of the unit and was meeting with his Dr when we showed up...then waiting behind us were the speech therapist (to feed him his lunch), his nurse (with his meds), and the respiratory therapist (with his breathing treatments)...all of us waiting patiently in a line. (Even later came palliative care to visit, physical therapy to sit him at the side of the bed, aids to turn him, friends to visit. It's a happenin' place!)

Seeing him eat was a new element to the visit. At lunch he did so-so and had to be suctioned. The speech therapist said that the main thing that he needs to regain is tongue control so that he can better manipulate the food. She confirmed that eating is exercise and I told Dad that most people DREAM of being prescribed exercises that involve eating! He chuckled.

He asked me about his medications, specifically the pain medicines and he seemed to be sorting them out as I answered his questions. He also asked me,"What is Coumadin for?" and was surprised when I told him that it is a blood thinner and that he had a pulmonary embolus during his ICU stay.

A few times, when he wanted us to readjust him, he spelled, "Push the normal button" or "Push the max-inflate button" both of which are bed-setting modes that are located on the OUTSIDE of the bed rails - he can't see them, but he has been paying attention to what they are and what they do.

He has also figured out the food system telling me at 6:55, "You better call them. They close at 7." He had only been eating less than one day at that point but had the system figured out.

I fed him his dinner with a bit of anxiety, not wanting him to choke on me! But he did great! In fact, he talked with his laser pointer the whole time, giving a new meaning to the phrase "talking with your mouth full." I told him it was nice of Tim to affix his laser pointer to a plain black headband and not a pink sparkley one - then I found out later that Tim had told him, "Dad, you better be glad it wasn't Flora doing this - she would have given you a Mickey Mouse ears headband!" Ha! (True!)

When I started to feed him he corrected me and had me move the table from beside me to across his lap. He wanted to sit in front of his meal and see it and smell it and have a real meal. I was so pleased he said that - of course he should have it in front of him!! He has been waiting so long to re-enjoy the simple pleasure of a meal. (They have maintained the tube feedings at the same rate because he isn't sustaining enough calories from his meals yet. He ate about 1/2 his dinner for me and decided he was done.) He seemed to enjoy hearing the list of food choices available to him when we chose all 3 meals for the next day.

When his friend Rick came to vist, Dad introduced us (not knowing that we had already met at a previous hospital visit). I was very encouraged to see Dad engaging in social niceties. For such a long time there, polite conversations was outside his abilities. All conversation revolved around "S-U-C-T-I-O-N," "P-A-I-N," and "F-A-N."

He was able to tell Rick and me details about the support staff, lists that he is keeping in his head, and plans he has for "when he gets his voice and legs back"...in the meantime he adds to his mental lists.

All in all he seemed more fully in command of his environment which made it a very encouraging visit

Homecoming Anniversary Celebration

Happy Anniversary to Bob and Sue Pinney on 6 years since Bob came home from rehab after being in the hospital 7 months with GBS! We are so glad to glean from the wonderful advice and encouragement that you give our family.

Food! Glorious Food! (Update from Nancy)

Hi Everyone,

Thanks for checking in!

Steve passed a swallowing test this week! He has “graduated” from ice chips to pureed regular food! This means a real menu, a plate, and choices! His first meal was turkey and gravy and thickened orange juice. He ate every bite. It even looked like turkey in the way it was presented :) See picture on the right. It was so great to be part of this milestone! His swallowing has returned well enough for this and next his tongue needs to cooperate in order to be able to get some texture to the food. But, he is on his way! 

Steve also was asked to attend a meeting between Dr. Krause, the unit directors, Pat and Brenda, and Lindsay, the speech therapist. He sat erect in the wheelchair and used his voice as they discussed what the unit could do to continuously improve. He gave a number of well thought out suggestions, from both the patient and engineering perspective. I was so proud of him. The meeting lasted an hour and everyone listened so attentively and asked questions. We are thankful for this effort to give Steve a voice to help others.

Last week I mentioned I attended a church service where Willhem Nel, a GBS survivor, was the speaker. He was told he would never preach again! He now pastors a church in South Africa. I had told Steve about how his book, “Silent Adventure," affected me and he asked me to read it to him. We have had some very special moments and conversations as we continue through Mr. Nel’s account of God’s faithfulness during his illness and his ultimate healing.

More blessings of the week: nurse Tara buying me a pizza, two friends already on their way to visit when I called Sandy to ask if she could put the word out because it was a particularly lonely day for Steve, a quickly delivered new bed for Steve and a service call from the manufacturer of the bed ordered by Pat, just to make sure it was working as well as it possibly could. Things like this happen daily and remind us that we are surrounded by love -- God’s love through people. This week ended with a special “pop-up visit” from daughter-in-love, Flora, and Evy (our dose of vitamin E). Flora is helping Steve with his dinner as I write this.

Love, 

Nancy

It's all over the internet!!

Hey everybody, Mom is working on a blog update with some recent good news, so no update right now, but I do have a request. Dad is supposed to be getting a piece of technology later this week that he can use to communicate and also surf the internet...which means he might read this blog on his own! Over the next few days please send notes of encouragement for him to my email address (I know many of you aren't keen on using the comment feature of the blog) and I'll compile them into a post on here for him to find when he logs on! Please help me welcome him to his very own story. ;) Thanks!  FloraSueRN@aol.com

Weekly Update (by Nancy)

Thanks for checking back in. It has been a busy, great week with visits from California family and Milwaukee friends back to back! Tim was also here for two days during that time and got to see his “adopted” Milwaukee family, Margo and Dave Hoffman. Steve’s Uncle John, Aunt Norma, and cousin Heather Hoel stopped by for a couple of days on a trip through the Midwest. See side pictures which show Steve sitting outside for the second time with his family. 

Steve continues to mostly use the laser pointer to communicate and also is able to use his voice occasionally as he is still learning the breathing process that is required to use the speech canula inserted into his trach. He is quite articulate. He gave his Uncle John detailed directions for the BB King Jazz Parlor ribs joint in Memphis (their next stop after Cincy). 

Steve’s arms and hands are much calmed down from the numerous sensations that caused extreme restlessness in him. Dr. Krause has adjusted the medicines and his mind is now calmer and more “mellow” as this has diminished. She suggested that he might like to share his “engineer mind” in a meeting with her and unit directors Pat and Brenda to offer his thoughts on how the unit could serve patients even better. He readily agreed and the meeting is set for Thursday. He joked that he has no business clothes for it and this will be the first time he has worn a catheter to a meeting. 

When he told me he will have a swallowing test again this week, he said it will be here in his room, calling it “party central.” His sense of humor is returning. Steve has a new bed, offered when he just couldn't get comfortable on the old one. I guess after lying on your back for five months you need a change! Steve’s breathing goal is to continue weaning on a low setting with only some support until he is stronger to go on to the trach collar with no support. He has hit 12 hours and expects to hit 16 very soon. The goal is to hit 24. Right now, they set it to full support at night.

At the invitation of our friend Margo and her cousin Janie, I attended a Sunday service at Heritage Assembly of God where they were having a healing service and a guest preacher from South Africa. His name is Willhem Nel and he had had a severe case of GBS in 2009. I was very inspired by his message and of course seeing him preach and move fluently around the stage, since they said he would never preach again. Also, he flatlined for 25 minutes during his early days of GBS and has a near-death story woven into his testimony. He came and held my hands, making sure to touch the wedding ring, as he prayed for Steve by name. It was so powerful and moved me and many others to tears. Janie bought me his book which I have devoured. It reminded me that we need to hold on to the Bible as we never have before and commit specific scripture verses to memory. Then we always have them with us if, perchance, we are unable to move our hands or open our eyes one day.

Speaking of that, as you may remember, I have seen numerous examples of Isaiah 65:24, which says “before they call I will answer!” Here’s the latest and it concerns Charlie, our dog. You’ll maybe recall that for a month the Ziebro family kept him for us when Steve was in the critical stage. Before they offered I didn't even know them. Several friends have kept him overnight during this time.  Well, I needed help to walk him when I couldn't get home in time from the hospital so I decided I needed to make flyers and put them in mailboxes. (I didn't stop and ask God for help.) As I was walking him down the street, thinking of what to put on the flyer, I saw a young girl and her dog on the corner near my house. Our dogs met and we talked and I asked her if she knew of a young girl in the neighborhood whom I could hire for Charlie. She, Emily, immediately responded, “I would love to!” The next day she came to learn where everything was and while here asked about Steve. (I had told her a bit the night before). She asked if she could pray for us right then. Emily held my hands and prayed the heartfelt prayer of one who knows God personally and is convinced He hears. She has helped with Charlie several times since, and more, has become a new Christian friend in the neighborhood.

And wait there is more……my friend, Sandy, along with Flora’s sister, Kristy, have found and are researching a computer application with smart board that translates laser pointing to use the computer and spell words easily. Seems we could rent it by the month. This was just yesterday so we are in the learning curve as to whether to get it, but it could be a real answer to so many things as we wait for Steve’s hands and voice to come back online.

Wow, that’s a lot to type and for you to wade through, but again, thanks for caring and praying us through this journey.

Love, 
Nancy and Steve

Continued Progress (by Nancy)

Thanking God for the continued progress Steve made in weaning off the ventilator this week. He sometimes has “pressure support” where the vent helps him breathe and a few times has had only the “trach collar” which means he is off the vent and just being supplied extra oxygen. He has been able to use this for as much as 2-3 hours every now and then! The medical staff feel he has turned a corner in his breathing progress!

The other big gain has been in sitting on the edge of his bed, erect posture, good head control, and able to be without staff supporting him for up to a minute and four minutes total. A big difference from when just having his legs lowered to a semi-sitting position made him too dizzy to continue! 

Thanks to the Bantas, Gieglers, Rick, and two buddies from Steve’s railroad group for their visits this week. They remind Steve of the life he is coming back to!

Please continue to pray for perseverance, hope, and the sense of God’s presence for Steve, especially at night. The phantom limb movement and weird pain in arms and hands are in his words, “driving me crazy!” Another aspect of this strange disease as things “wake up.” Thank you!

"Good Medicine" (by Karen)

Lee and I had a good visit with Steve Sunday afternoon. When we first arrived he was pretty exhausted because he had just finished 3 hours with no respiratory support (hard work!). He wasn't interested in using the voice-assist device but then he did rally and demonstrate his new laser hat.

We had quite a good conversation with him spelling. At one point we got confused about a word and he spelled out “I..D.O.N.T..H.A.V.E..M.Y..S.P.E.L.L..C.H.E.C.K.E.R..O.N”

Later, Nancy asked him to please slow down with the laser – linger on each letter until we “get it.” He spelled “I.F..I..G.O..A.N.Y..S.L.O.W.E.R..I..W.I.L.L..F.A.L.L..A.S.L.E.E.P..”

We had some good laughs at those comments and that felt wonderful.

Roller Coaster Week (by Nancy)

It has been a roller coaster week for Steve again but it ended on a breakthrough high!

He began the week dealing with the effects of steroids that were prescribed for gout in his feet and ankles. Apparently it is quite a painful condition because he thought his ankle was broken! Anyway, Dr. Krause treated it quickly and his ankles are better and steroids are out of the picture.

Two huge improvements on the communication front:

·         Lindsay, speech therapist, convinced Steve to use the laser pointer attached to a hat as he now has the head and neck control to point to letters on the alphabet chart. Everyone who has “recorded” words as he talks says they can’t keep up with him. He flies over the chart with the laser!

·         Up until now, for Steve to be able to make sounds or speak, they had to divert air from his breathing a little bit. It was very tiring for him. However, Thursday, Tennille, respiratory therapist, was able to adjust the speech cannula that is put in the trach so that Steve can talk whenever it is in. He has been able to have it in for 5-6 hours at a time.  Most of the time, his words are clear and the voice sounds more and more like his normal voice.

Dr. Krause and I saw a muscle twitch in his forearm when she asked him to tense it up! Come on, nerves from vertebrae C 5,6,7! (I don’t really know what I’m talking about here).

Kristy, Flora’s sister, came (with her sweet daughter, Flora Mae – age 5) and visited Steve Thursday night and here is her news: Armed with two new communication methods, Steve inquired of the unit director during her visit tonight, as to whether there are other forms of technology he might try. Specifically, he is interested in trying an eye-tracking system used by patients with Lou Gehrig’s. She said she would be meeting with a member of the technology staff at the main campus tomorrow and would see what might be available. Perhaps this might be a great opportunity for some Assistive Technology Sales Reps to bring in their best products for Steve to test and review! Who better for the task than an engineer?! Even if Steve no longer needs it because of the speaking cannula, he might be able to help the unit test it out and perhaps bring on some new technology in the future.

I also asked the nurse if there was another way to find some relief for Steve’s legs which he said feel like they are falling asleep. She said we should try some leg wraps and placed an order for these that inflate and deflate with air – offering a light form of massage and also help to prevent blood clotting.  (He hasn’t had them in quite a while because medication was being used to prevent clots.) Steve said that they felt good. 

Thank you, Kristy! That's what happens when two “techie” minds are left together to think on what could be!!

And, wait, there’s more….

Steve got to go outside on the patio in the wheelchair! Tennille rounded up the nurse, aide, and the portable vent and they used the Hoyer Lift to get him into a special wheelchair so he could go. I had Charlie also so it was quite the procession! Even Brenda, unit director, came along for a bit. He was out there for a half hour, soaking up sunshine and breezes that he hadn’t felt in five months. We took pictures and I heard one of the staff say, “This is what makes it all worthwhile!”

Also, Wednesday was my birthday. Becky, Josh, and Diksha came down and we went to IKEA, where she had never been. Something there for everyone to find interesting!

They had a good visit with Steve, too. When I was there, Becky pulled out a present and card from Steve that Tim and Flora had shopped for after showing him pictures of several things. Then they transcribed his message for me on a card. A beautiful necklace, sweet message from him and, yes, tears. I got to open it with him looking on. The day ended with a nice birthday dinner at Low and Debbie’s house and a cake made by Sue. Thanks to everyone for texts, cards, and gifts that made it a special day indeed.

Love

Nancy

Happy Belated Birthday, Mom!!!

Happy belated birthday, Mom!!! We talked and texted but this is your official blog shout out!! We are adding your name to the giant sheet cake of celebration! You, my sweet mother-in-law, are so good at celebrating others- I've witnessed firsthand the cards and kind deeds you have done for others- even during these past 5 months!- during the most trying and exhausting time in your life. We can't wait to celebrate YOU!! You are a very empathetic and wise person. Thank you for continuing to share yourself and letting us shoulder even a small part of your burden. We draw strength from your faith and the way you turn to God for each day's portion. You are oh-so-dearly loved!! (And all the blog followers shouted a hearty "Amen!")

Tim and I and the kids are on vacation this week and have been in and out of cellphone range. We got to catch up with Mom on the drive today. She was telling us the dramas of the week- Tuesday started rough with lots of emotions and negotiations of needs and learning to find health in the current season of chaotic living. This is an ongoing process and Dad is being more of a participant in the terms of negotiation. Prednisone is probably not making those conversations any easier.

Mom also filled us in on all of the highs- and there were many! Dad got to go outside on Thursday!!! (pictures and story to follow from Mom); she loved the birthday card and present that Dad picked out to surprise her with (more on this story later); Becky was down for a short but sweet visit; Dad's labwork came back normal; decision on a port vs new PICC can be deferred for another week; and Dad has been speaking more using a special speech cannula. My sister, Kristy, was able to converse easily with him and problem-solved quite a few resources and plans for easing some of his issues. (Thank you, Kristy!!) Also, Dr Krause has joined the blog! Welcome! Thank you for all you are doing on Dad's behalf. Please forgive any errors in medical reporting...we often find ourselves playing quite a bit of the game "telephone" to write these blogs.

Last night, Tim and I were camping in the Alleghenies and found ourselves walking back to the camper directly in the crosswalk of a momma bear trying to get to her baby cubs that were behind our campground!! I scattered and ran into the closest campsite but Tim bravely walked directly in front of the snarling leaf-rustling momma bear to get to our camper that was holding OUR 4 baby bears!! He then came back in the vehicle for me. We all 6 hunkered in the camper and listened to the baby bears cry for their momma and we watched her waddle through our camp and pick them up. Later in the night the bears returned and got into our stuff (plastic bin, chairs, etc). Thrillingly scary to be sure!!! Tonight we found ourselves going to a classy art in the park presentation of Mary Poppins in Upstate New York, surrounded by beauty and fancily dressed people (and us in our fanciest camping clothes). In this way we were struck by the GBS analogy...sometimes you fear you might get eaten by bears in the night that keep lurking and circling around the camper... But then circumstances change a bit and you find yourself surrounded by singing and joy and laughter.

Our prayer is that the bears stay at bay and the joy and singing continues to expound! Mom and Dad, you are so dearly loved. Watching you two together the other night, we all heard Lisa the RT, say, "You guys remind me of my parents. They have been married a long time but they still look at each other like every day is their first date!" So sweet and so true. We love you both!