Update from Nancy

From Mom: 

Steve's recovery moves along and we trust God that what is unseen is steady and throughout his body.  I heard about the recovery of another patient who experienced months of almost imperceptible improvement and then so much almost at one time that she had difficulty believing she could do so much more! Such a strange disease.

Steve still has the full beard:). But he no longer resembles mountain man as our hairdresser came to the hospital with shears at the ready. Thank you, Lisa, for this gift of service! He looks great! (See picture)

Steve's diaphragm is beginning to show signs of waking up, as measured by the NAVA machine. A few weeks ago it was detecting diaphragmatic movement in 1 out of 12 breaths, last week it detected 1 in 4! We pray for more breaths each week and they will come!

We continue to use a combination of the letter chart and some speaking to communicate. Some words are unclear and some quite plain, depending on several things, including lip and tongue movements required.

Thank you to Becky and Tim and their families for staying with Steve so I could go visit my dad and brother in Iowa. My sister Janet and her husband Eric came down from Minneapolis and it was such a special time of refreshment with everyone!

Thank you for prayers, cards and visits!  None of us anticipated such a long haul and your presence in these and other practical ways means the world to us. 

Love,

Nancy and Steve

Update from Becky

I was so pleased to be able to spend four days with Dad this weekend while Alex held down the fort at home. Mom was visiting Aunt Janet, Uncle Eric, Uncle Dick, and Grandpa Ury in Iowa for a relaxing weekend.

 I was made very aware of what Mom's day is like. I continue to be amazed at her ability to be everything she can be for Dad, take care of a condo that always seems to need her attention, deal with the occasional car issues that seem to creep up, AND still pay attention to all the "lingo" that goes with having a loved one in the hospital. (I washed your "superhero cape," Mom ;)  )

Dad was pretty content this weekend, and said things like, "Can you hear TV?" and "Watch what you want" and "It helps to know you are here - I can relax." He also wanted to know, "What's Josh (my 16-year-old  son) up to?" I was driving Mom's car while I was in town and I told Dad I would top it off with gas before leaving, to which he immediately shook his head "no." He never wants me to pay for gas or food when I am there ;) It's just one way he still tries to provide for me. :)

While I was in town, I got a chance to go to the Creation Museum. Dad asked, "What part are you going to see?" so conversational - a great sign. While at the museum in the gardens, I found a bench tucked out of the way and decided to rest a bit. Moments later I was sobbing at the frustration of the situation. My Dad should NOT have to go through this! I was so angry at the illness, at the fact that he "hasn't seen the sun in four months," at everything. But not at God. And not at any of the people also affected by this or caring for him. Just angry because it's not fair. 

But this is normal, and expected. If we didn't have these moments of emotional release, we would explode. I'm certain of it.

Dad had visitors Friday evening - a huge thank you to Dave and Dan!

Visitors on Saturday evening - Sue and Dave Giegler - Thank you! Sorry - I forgot to leave a note that I was at the museum ;) lol

Visitors Sunday afternoon - Lee and Karen Mason <3

Dad LOVES visitors, and  he may not be able to talk very well, but as he told Tim and his family upon their arrival Monday afternoon, "the company is priceless." :)

-- 

Becky :)

Lookin' good!

Dad got a haircut today...check out his glamour shots ---->

Still waiting...

The swallow eval today showed that some but not all of Dad's throat muscles are working. That means only Italian Ice and ice chips for a while longer....

Update from Nancy

From Nancy...

Hi, blog followers!

Those of you who have logged much time at a hospital know how “elastic” time can be. Sometimes 20 minutes can be long and then the next time you look at the clock, hours have gone by! Days run together and so do the weeks. 

The biggest news of this week is that on Thursday, Steve was given a state-of-the art ventilation-measuring apparatus called NAVA. (You may remember that is one reason we chose Drake in the first place). This tube which goes down into the diaphragm measures the activity there as relates to each breath. He was bouncing all over the place in terms of full ventilator support, then all the way to being off the vent entirely for up to two hours. With seven rotating pulmonologists, this all gave a mixed picture as to where he really was. The NAVA, which is very new technology, measures the patient’s capacity and then sends information for changing vent settings.

Steve’s reading on Thursday was that his upper chest muscles have been doing all the work and  so far the diaphragm hasn’t been engaged. He has activity of the nerves radiating from C3 and 4 in the spinal column but not from C5, which “feeds” the diaphragm. This explains a lot in terms of the great effort he has expended so far and how hard it has been. The muscles he has been using aren’t made to do the work….they are for “backup” to the diaphragm. So he will be given rest from weaning during each night and resume during the day. Taking him completely off the vent, even for little amounts of time, will be determined by the activity measured weekly in his diaphragm. When those nerves activate those muscles, then he will make real progress getting rid of that ventilator once and for all!  So thankful for this technology that gives a tailored plan for Steve!

On the talking front, he has to have a setting on his “tubing” that forces air over the vocal cords and diverts air from his lungs, so it doesn’t feel great to him. Nonetheless, he has been willing to use it more this week and verbalizes a lot when it is switches on. Much of the time I can’t understand the words, but with the combination of the alphabet chart for spelling and also hearing the words, I can often get it. Sometimes, it is very clear! Like this week he said, “Now, can I have some ice?”  (after we had taken too long doing other things for him) He also said several times in frustration, “Oh, nevermind!”

Steve was helped to sit on the edge of the bed for 20 minutes with his feet on the floor. He mostly holds his own body erect and his head, with a couple of therapists supporting at key areas. On Thursday he was transferred to the recliner via Hoyer Lift and stayed for three hours! Thank you, Sue Giegler, for staying a “double shift” with Steve while he accomplished this and received his NAVA!  (I was out of town for the day.)

Steve still awaits the swallowing test but in the meantime, appreciates all the ice chips I can bring and sometimes a little Italian ice.

Thanks for following along. Your prayers are so appreciated! We feel them!

Nancy

July 13

Happy birthday to me! I'm adding my name to the giant sheet cake of celebration ;) What a party we have to look forward to!

We got to FaceTime with Mom and Dad this afternoon. Dad looks great! His eye looks so much better! Although he still reports seeing double, he was able to see all of us and give us lots of smiles, head turns and even an "I love you!" What a great birthday gift.

Weaning has been slow lately with lots of pressure support. Dad's exhaustion level and high carbon dioxide levels have shown that his body has not been tolerating weaning...turns out, Dad had been breathing using his accessory muscles and that his diaphragm is not fully reinnervated yet. No wonder it is an exhausting process- he has to be mindful of each breath.

Since this discovery, they started using NAVA (Neurally Adjusted Ventilatory Assist) with Dad on Thursday. You may remember us mentioning NAVA when we were comparing LTACH facilities 3 months ago. Mom is working on a blog with more NAVA details...

A Few Famous People With GBS

by Lisa Turner

Jun 16, 2012

Andy Griffith, American actor on The Andy Griffith Show and Matlock, developed Guillain–Barré in 1983
Rachel Chagall, actress

Joseph Heller, author, contracted GBS in 1981. This episode in his life is recounted in the autobiographical No Laughing Matter, which contains alternating chapters by Heller and his good friend Speed Vogel.  Joseph Heller (May 1, 1923 – December 12, 1999) was an American satirical novelist, short story writer, and playwright. His best known work is Catch-22, a novel about US servicemen during World War II.

Franklin D. Roosevelt, U.S. president. In 2003 doctors concluded that Roosevelt”s paralysis, long attributed to poliomyelitis, was actually Guillain-Barré syndrome.

Len Pasquarelli, sports writer and analyst for ESPN

Markus Babbel, German soccer player

Serge Payer, Canadian-born professional hockey player. After battling and overcoming the syndrome, he set up the Serge Payer Foundation, which is dedicated to raising money for research into new treatments and cures for Guillain–Barré syndrome.

Morten Wieghorst, Danish soccer player played for Celtic and Brondby

Lucky Oceans, Grammy Award winning musician

William “The Refrigerator” Perry, former professional American football player with the Chicago Bears was diagnosed with GBS in 2008.

Tony Benn, British politician.

Ambrose ("Rowdy") Gaines IV (born February 17, 1959 in Winter Haven, Florida) is a former American swimmer, U.S. Olympic Hall of Fame member, Olympic three-time gold medalist, and member of the International Swimming Hall of Fame.

Samuel Goldstein, American athlete and Paralympian.[27]

Luci Baines Johnson, daughter of President Lyndon Johnson and Lady Bird Johnson. Diagnosed and under treatment for Guillain–Barré in April 2010.

Hugh McElhenny, Pro Football Hall of Fame inductee and former professional American football player with the San Francisco 49ers.

Norton Simon, American industrialist and philanthropist.

Hans Vonk, Dutch conductor.

Danny Wuerffel, 1996 Heisman Trophy winner from the University of Florida.

Happy birthday Alex!!

Happy birthday to Alex on the 4th of July!! (Sorry I'm late to post) Thank you for being the best kind of firework- the kind that you can ooohh and aaaahhh about!! You are a good dad (ooohh), a great husband (ahhhh) and a super hard worker (ooooo)!! Thank you for using your keen electrical mind to make Mom's life easier during this time and for all of the other big and small ways you are contributing. They may be unseen but they are not unappreciated!  (See pics)

July 1-3 by Becky

From Becky-

This week was a good time for Mom and me to connect again, and to really check in with how we are doing. We spent time with Dad, but since he was pretty stable, I took this opportunity to really check in with Mom. She has been so open and honest about how she is feeling, but we still worry about her. Dad's illness is simply a huge concern, and could well be the biggest test of her life and faith - at least so far. And yet she is still standing. I was amazed to simply watch her expressions and her mannerisms as she interacted with Dad. Everything from the way she clipped his nails and massaged his hands to the way she spoke softly to him and the way she gently kissed him oozed compassion. I am continually amazed by her strength and her commitment.  

We spoke of how Dad seems to be "in costume" much of the time. He will say things we aren't used to hearing him say, and responds in ways we don't expect. This analogy helps. But let us not ignore the sweet times he quickly looks over at you and smiles at something funny that you say. I swear one time this week he laughed at me! I wish I could remember what it was I said! 

I've been thinking more and more about the drugs Dad is on, and it is really no wonder that he seems to be "in costume." These drugs are mind-altering, heavy medications that are designed to help, but have some ugly side effects. He knows that he is acting differently, but I know it is hard to control. So there you are left feeling unable and frustrated. 

I connected with Dad on knowing how it feels. My experience was not nearly as severe, but I felt unable and frustrated also. I had a couple very dark days. I told Dad that I was giving him permission to have this feeling, and to release those things we don't like. I said, "We'll either correct you, or ignore it." And he looked RIGHT at me and smiled. I know he doesn't want to be that way, but honestly, he doesn't always have the control.

So, we pretend that he is "in costume" or "covered up." That Dad we have all known and deeply love is still there, he is just covered up by the ugliness of GBS that IS NOT TRULY HIM. We will get him back. We WILL beat GBS. 

In the meantime, Mom needs a new mechanic. I was unable to fix her car (felt all empowered that I had fixed it for a couple days anyway!). The good news is that her new carpet is in and walls are beautifully painted, and things are looking so homey. When she is at the condo, she is revived. She thinks about Dad and her being there together, and everything she does to "fix it up" has Dad at the forefront of each thought. 

Mom, you are the ultimate example of faith. I know you are worn down, but never forget the army of friends and family who are supporting you in every possible way. Tell us what you need. We'll do it. 'Nuf said.

Love you-- 

Becky :)

Progress and milestones

From Nancy:

 So thankful for Steve’s continuing progress and milestones. Everyone who hasn’t seen him for a few weeks comments on how much better he looks and his increasing alertness. The Gondoshs visited Wednesday and reported on how much easier it was to communicate and it seemed like “Steve was back.” Rick Thomas says he sees a difference each week when he visits. 

With being more aware and alert, Steve is able to make his needs better known. There is often frustration when these are not met in the time frames he wishes. Sometimes they can’t be met at all, as in a limit on ice chips per hour. Can you imagine? His “world” is still the four walls and he can’t get perspective on the whole floor and what’s going on that pulls staff in so many directions. The visits and cards are cords to the outside world.  Again, thank you!

Here are  the big events of the week: 

·         Swallowing is coming back….ice chips have been forbidden up to now as the smallest bit of water could go to the lungs. You’ll remember that we specifically have been praying for swallowing and speaking in the month of June.  He will have a swallow test with a camera threaded down his throat, probably this week. That means there's a possibility that more is going on than we can see!

·         There will be more opportunities now for speaking since a new trach has been put in that not only suctions way deep but also allows for the easy insertion of a valve by certain staff so he can practice using his vocal cords. He has enough air available to make sounds and words for a little bit at a time…that’s also a big thing!

·         The left eye looks a lot better and Dr. Krause was able to speak to Steve’s doctor at Cincinnati Eye to get some advice. He thinks the drooping and redness and dislocation of the pupil are due to nerves not being fully awake yet. He doesn’t think the eye itself is damaged! Praise God!

·         With the help of something called a Hoyer Lift, a big sling-like contraption, (see sidebar picture), Steve was able to be placed in a recliner. It was so comfortable for him….see the peaceful picture of him sleeping. He has been placed in it twice this week. It takes about 5 people to get things in position so this doesn’t happen every day. I can sit beside him on the same level, almost like being at home!

On the home front, I had a wonderful retirement lunch with friends from the library where I worked. It was at Brios and Tim was able to be there also. A really special time of reminiscing about the last 11 years! 

AND Connie Thomas, Sue Ann Walker, and I finished the second coat of paint in the lower level and the carpet was installed on Wednesday! Again, my thanks to Jane Templeton and Debbie Ritchie for the first day of painting. A special thanks to Connie, who not only painted with me for nine hours, but orchestrated the whole process in helping me get carpet and paint samples, a great contractor, and also deal with insurance snags. They made an overwhelming job fun….not Kings Island fun, but fun nonetheless! So thankful to have the room back together after the pipe-bursting incident six weeks ago!

Thanks for checking in!

Nancy