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

A simple game of pool= a really big deal!

I just got this encouraging email from Bob Pinney. If you've been reading this blog you know that Bob had GBS in 2008 and was in a very similar condition to Dad. Thank you, Bob, for the encouragement. We celebrate your recovery with you!!

Hi Flora, we just got home from the Outer Banks, spent 4.5 days with Sue's side of the family.  We got home today at 1245pm, it was 250 miles & about 4 hrs of driving, not bad.  I'll attach a few pics, but wanted to be sure Steve got to see me SHOOTING POOl..  It was the first time in 20+ years, but I used the table to help me as I walked around for the shots, but sat down after each shot.  Glad to read that Steve's really showing great improvement........

Bob

See Saw (a post by Nancy)

From Mom:

This has been a week of up, down and up again!  Steve usually gets to sit in the sling chair twice a week…..a chair with adjustable foot for lowering legs and head for sitting up at increased angles.  Well it’s also on wheels and Tuesday Steve took a trip!  He was up for getting out of those four walls and took two laps around the floor with his entourage of therapists. Diksha, our granddaughter, was there and she and I had fun popping around the corner in front of him as he came down the hall.  This is a long way from when the first time in the chair for a much shorter time made him dizzy.

Then the dip happened the very next night when he was turned in the bed to better position him.  His blood pressure shot up and his heart rate dropped down pretty far.  This brought many to the room, including the night doctor.  After a blood draw and an xray, they had to wait until morning to be sure of the cause.  Another episode happened and then the rest of the night was calm.  In the morning, it was determined that he had taken on too much fluid and that was the cause.  No pneumonia, thankfully.  Becky and I spent the night, she arriving from the condo at midnight.  We just wanted to be near to reassure Steve.

After a day of rest and no weaning, today he surprised his therapists and me with sitting on the side of the bed, supported front and back, but upright on his own and holding his own head up.  It was so great to see a normal pose again!  He did all the head rotation they asked of him and side stretches they performed.  And then to top off the day, he spontaneously made some vocal sounds without the special vent valve….his low voice but not clear what he was saying…..yet!  But he did it several times, which means air was available to travel over his vocal cords in order to make sounds.

It was wonderful to have both Tim’s family and Becky’s family in for part of the week.  What great reinforcements they are!  Kids all made Father’s Day cards and presented him with balloons and flowers.  Alex, Josh and Diksha swept through the condo doing so many things I couldn’t have gotten to or didn’t know how to do (which cords go with this whatchamacallit anyway?)  Connie helped me get the first coat painted in the basement (scene of the burst pipe last month) and Rick, Low, Darlene and Bob, and the train guys visited this week.  We are so blessed by you all!

Nancy

Update from Becky June 17-19

This blog was sent to me by Becky. She told me it was rather long and that I should edit it, but I think it is rather perfect. Thanks, Becky!- Flora

Blog post for June 17 – 19

Alex and the kids and I arrived at the hospital on Tuesday afternoon. Dad was sitting up in his sling chair facing out the window “talking” with one of his doctors. He looked calm and relaxed. He lasted 4 ½ hours in the chair, a new record for dad. Once back in his bed, he wanted us to adjust the call button so that he could push it. He repeatedly pushed it over and over again, like a little kid trying out a new toy! Then he spelled
“Let nurse know light moves each time I test it” - such an engineer :)
He also wanted to know if there was a video camera at the nurse station to see in to patients' rooms to watch people in his condition. There is not. He wanted to tell me about the machine with the blood draw sign on it. “They turned something off” - a sign was placed on that machine to say only draw blood through IV line, as he was stuck 9 times in one day! Ouch! Today (June 19) they were having trouble getting enough blood to fill one tube through the IV, so they might need to revisit this issue.

As I was doing some range of motion with his arms, he was super relaxed and his eyes were rolling into the back of his head. He thoroughly enjoyed it and spelled, “Where you learn do that?” :) It made me feel good to know that he thought I was doing a good job!

On Wednesday (June 18), Dad began weaning (completely off vent with only oxygen passing by his trach)at 12:45pm. He lasted about 1 ½ hours. The daily goal right now is two hours. But I was super proud of him because he was weaning WHILE his 3 good buddies were there from his Train friends group! That takes a lot of concentration to focus on their conversation AND breathe unsupported! Great job, Dad!

Shortly after that, the speech therapist Lindsey came in to try to help dad make some sounds. He said, “Hi” crystal clear and in his wonderful deep voice! After that he tried to talk, but it was high and raspy, and hard to decipher.

Dad also had a Sunday School friend "Lowe" come to visit for a brief period (his wife was having surgery downstairs). He wanted to try the laser pointer glasses. Lowe was standing in between dad and  the alphabet sign hanging on dad's wall, and Dad spelled, "move". :) We found it funny.

Dad had a couple episodes on Wednesday evening that startled us. He is doing well now, but when they moved him yesterday to change his bedding, he was having trouble getting oxygen and his heart rate dropped into the 20's. It happened again after that, and then remained stable the rest of the evening. The doctors took an X-ray of his chest and discovered fluid that is causing some of the problem. They increased his medicine to drain the fluid and I can already notice a difference in how he feels. He admitted to anxiety through it all and that it caused him to not sleep well. Mom and I slept at the hospital that night to see him through.

Dad is definitely becoming more frustrated at a lot of things about his situation. Usually his frustration is aimed at the care he is receiving by some of the staff, especially the overnight staff. The doctors address this with him each time they come to see him.

Some things he spelled:
“If left with incompetent tech, then forget it.” - referring to getting a good night's rest.

“Why chest tight? Look at belt” - there was not a belt, but a wire laying across his chest

“Black vinyl necklace on me.” - trach collar tight/irritating

“Night tech don't follow rules”

“I am so glad you are here” - to me :) (Finally something besides “cell phone”!)

“I love you” - to mom

“people and their proven incompetency” - referring to night techs again

Dr Krause will get pictures taken of dad's left eye to send to ophthalmologist to hopefully get a better response. So far they have said, “patch it” - but that doesn't seem like it will FIX IT. It is still red and droopy. He still has trouble getting both eyes to work together to focus.

Today (June 19) Dad had two RT's that worked with him. They are from the main Drake hospital, and were in covering for people on vacation. They told us about a different kind of track called a BLOM trach. It has a symblotic tube that is used to do deep throat suctioning, that would do a type of continual low suction throughout the night making him more comfortable. It also has a speech component that would allow Dad to speak anytime he wanted! What a wonderful hope! Instantly the room felt brighter ;) They will need to replace the current trach soon, and the RT's will communicate with the doctors about trying this new BLOM.

The Morales' are visiting tonight and he welcomed their arrival :) As we were leaving, he wanted to spell desperately. I thought he was going to say, “drive safe” or “love you” or “see you soon”. But no. He spelled
“Piles of crap" – We assumed he was referring to a general state of things. :/ When asked if about staff, care, etc....he said no. And there wasn't any more to his message.

I really get him. I got quite "verbal" too when I was in the hospital for a long time. You are pumped full of meds, nothing seems to be working, and you are just plain sick and tired of the state of things. Your reaction tends to be abnormal to your usual way of handling stress. At least, that's what I think.

Hm. Ah well. Sigh.

We love you Dad.

-Becky :)

Letter-by-letter

There is no way to describe Dad right now other than "high need." He has lot of things to say and there is no way to know exactly what it is he needs until you complete the laborious process of spelling each word or enough parts of a word to make an intelligent guess.

When Diksha, Finn, and I first arrived to visit on Friday, his eyes lighted up and he immediately wanted to spell. I thought it would be a greeting, but instead he spelled "cho" (choking). He needed suctioned so we immediately addressed that issue and then restarted our greeting.

A few of the things that he spelled:
Bla (blanket).
Dav (wanted David the respiratory therapist).
Nine sticks (wanted us to know that they drew his blood 9 times that morning! An issue we have since addressed with the management. They will now only be using his extended IV or having the charge nurse draw his blood.)
I wish play ki(ds) Too t(ired).

He wanted to know, "Wh(en) is sch(ool out)?" and was surprised to hear that the kids finished on the 4th and that it was now the 13th. I told him that it was, in fact, Friday the 13th. I said, "You aren't superstitious are you?" And he made his eyes big and nodded his head yes.

When I told him that Tim scratched the side of our car and that he should give him a hard time about it, he smiled, rolled his eyes like "oh brother!" and spelled,  "Di(d) that to my C(adillac)."

Lots of signals about his hands and where to place them. A few of them...
Free ar(m).
Han(ds) tuck.
Pul(l).

I told him, "Mom is getting her hair cut tomorrow. You better be sure and notice and compliment her." He smiled and nodded.

Tim spent the whole day with him on Saturday and a few of the many things he spelled:
Glad you are here.
Just feel lonely.
Tell me (about) kids.

He gave Tim lots of instructions about helping him get to sleep and when to check on him and things to tell the hospital staff.

At one point he said, "Be sure and wash and use free stuff." When Tim asked what free stuff? He spelled "Gloves, mask, gown, goggles, etc." (yes, he spelled "etc") Tim then asked him was he worried about us getting him sick? And he motioned no. Was he worried about him getting us sick? No. He then spelled "no idea how contagious" and made big eye rolls and moved his head all around. Are you worried about us getting sick from the hospital germs? Yes.

Sometimes we would get in a groove and the spelling would come easily. Other times it was lots of trial and error, rising frustration, eye rolls, and restarts. This morning he clearly spelled "Idiot" but he didn't clarify who he was referring to. We let the matter drop.

The weaning process continues to be hard hard work for him. On Thursday, he weaned for 3 hours (no pressure support at all) so on Friday he tired very quickly and lasted only about 35 minutes. While he was weaning, he would start shaking his head "no" and breathing very quickly. Mom was able to help him regulate his breathing and keep his composure. I told him, "The things she is telling you sound like things that you probably said to get her through labor: 'Slow deep breaths' 'I'm right here with you' 'You can do this' 'We are in this together.'" She reminded him that she hit him while she was in labor and he smiled. When he was done with his weaning session, I asked him what it felt like when he was weaning. He nodded his head when I suggested "stretching" "burning" and "tiring."

He definitely is starting to have ideas about what he is and is not willing to do...

Mom attempted to get him to use his laser glasses to spell words using the alphabet board and he spelled, "This idea sucks."

The next day Tim tried to get him to use the laser glasses and he spelled "Moving target." He was able to clarify that with his eyes not working together it made the letters hard to focus on.

When preparing to wean on Saturday he told Tim that when he said "stop" they stop. And he reiterated the same thing to Mom on Sunday - "same rules." In light of that, we had a discussion this morning with Bob the RT about the possibility of making a formal weekly weaning plan and including Dad in that discussion to get his "buy in." Dad has consistently asked, "What's next?" and is now able to agree and disagree with treatments that are prescribed to him. The idea of Dad being able to have a goal and a say in what he can accomplish seemed to appeal to everyone including Dad. He is in a marathon and he needs a training schedule. Bob will discuss the idea with the pulmonologist. We want Dad to start gaining back his autonomy. What better way to do that than to have your very own "to-do" list?!? Today- wean for 30 minutes, tomorrow-wean for 35 minutes...

I have to take a moment to give big kudos to Mom. She is amazing with him. So so patient. When he was weaning and stressed, she talked him down from his anxiety and reminisced with him about their trip to the mountains. She was very soothing. There is little-to-no down time for her when tending to Dad. Not only is she providing loving support, companionship, and physical comfort, she is also doing quite a bit of case management. She has worked tirelessly jumping through hoops to get him an ophthalmologist. She told me "I will push on until I get one."

One big thing to report physically speaking- the Dr was able to feel Dad fire his biceps and his thigh muscles! Tim was also able to feel them. Things are coming back "on-line"!

This post has been a long one so I will end by saying to you the same words that Dad said to us a few hours ago, "Thank you for coming."

Weekly Update from Nancy

From Nancy-

Hi,

Here’s this week’s news from the GBS “front”:

You have been reading about the progress Steve has been making with the ventilator. After 3 months of asking questions, I’m still trying to understand where he is in the progression of getting off the vent. Up to now, he has been getting less and less assist from the vent in terms of what they call “pressure support.”  It helps him take breaths and for many days now it has been at its lowest support setting. This week the respiratory therapist has been giving him his first trials of being truly off the vent! So far, Steve has met the goal of 2.5 to 3 hours a couple of times! Other times, he was too tired to go more than about 5 minutes. It is truly hard work to wake up the lungs to do what they used to do without your thinking about it!

We are so proud of the effort and determination Steve has. We can remember in the early couple of weeks when we finally saw a tiny red dot moving on the ventilator screen indicating his body was helping the ventilator for the first time since GBS struck. Thanking God for this progress in getting off the ventilator, which is the key to so much more of his therapy progress, such as more opportunities to talk (with the trach collar and a valve that shoots air past his vocal cords). Occupational and physical therapy can also do more for Steve without the encumbrance of the ventilator.

Steve and I are trying to master a new way of communicating in which he moves a laser pointer attached to glasses to point out letters on a chart. It is a real learning curve if you can imagine moving small head muscles after weeks of being paralyzed. Facial muscles are returning and I have been so happy to see a few small smiles.

Another specific prayer request, please….I have begun working toward getting an ophthalmologist to come see Steve for his left eye. It  involves things like temporary credentialing to come to this hospital unit, several people consenting on both ends of the process, and a doctor willing to make the unusual out-of-office trip to see Steve. We really need this. Thank you!

Love to all our readers. Your support means the world to us.

Nancy and Steve

Wise words from someone who has "been there"...

In response to my last blog post, I received this comforting email from Sue Pinney (see pics--->). I asked her if I could post it here so that you could also be encouraged .

Hello all.....

 

I read the discouragement in your words, Flora. Please do not grieve. Steve is still here. He may look a little different; he may not be able to speak out loud; he may not be able to move his arms and legs, but he is there!!!

 

It is hard to look back at last year on Father's Day and remember what was going on then and to think you all had no idea what was to come. We can only take the days and weeks as they are given to us and do with them what we are able.

 

Steve's journey along the GBS path is reminding me of what we went through with Bob. By "we" I mean wife, daughter, sons, three grandchildren (three more born after he recovered), ex wife, mother in law, sisters, brothers in law, and countless friends and coworkers, cousins, nieces, and nephews.

 

We missed celebrating holidays....Valentines Day, Easter, Mothers Day, Memorial Day, Fathers Day, 4th of July.

We missed birthdays.....his daughter's, all three of his sons', his own, mine

We missed our 9th wedding anniversary.......

 

At his worst, someone told me "Bob wouldn't want to live like this." and my answer was: "He isn't going to!" I knew he would recover, and so will Steve. You will celebrate the holidays and birthdays and anniversaries all at once, and it will be the best party ever!!

 

Sending my love and prayers to you all. Please tell Steve "Happy Fathers Day" from us.

 

With love,

Sue

I guess the more holidays we miss, the bigger the sheet cake will have to be!   Who wants some cake?

Father's Day is Sunday :) :/ :(

We have just about finished our packing for heading down to Cincinnati for Father's Day weekend. The kids are finishing the cards they are making for Poppa Choo Choo and they are getting more and more excited. I, on the other hand, am getting more and more conflicted. I am looking forward to hugging oodles and oodles of family members, anxious to get Tim back to his dad's bedside so that it will ease some of his frustrated angst at being unable to fix the situation (a pretty normal response I think), eager to use my nursing eyes to evaluate dad's present situation, and grateful to have a chance to celebrate Steve for continuing to be a rock to our family. The lessons that he taught his kids continue to bless my life on a daily basis. Tim still remembers the time that his dad yanked him by the back of his collar and pulled him out of the doorway that he was walking through before his mother and sister. ;) "Ladies first, Son." I owe this man a lot for the faith, strong work ethic and respect that he built in his son. But if I am honest, the emotion that I am primarily feeling is grief.  I keep remembering last Father's Day when we were all down on the Ohio River, seeing the new Superman movie and eating at Tom & Chee's. (See pictures---->) It is hard not to contrast the smiling pictures from that day to the current state of affairs.

Fortunately, these offspring of Poppa Choo Choo's do not give me time to stay stuck in grief. (Diksha is also here this week while her poor momma has one final week of school) So instead, I will return to packing, and praying to my Heavenly Father on behalf of my precious Father-in-Law. Thank you for doing the same.

That sounds like answered prayer!

Update from Nancy: 

It’s only been a few days since we all have been praying specifically for Steve’s voice to return and for the swallowing to begin.  I’m thrilled to say that signs of both came just yesterday and today! 

The speech therapist has been trying a variety of things to see what might now be possible.  When he inserted a special diverter into Steve’s vent tube and asked if he could make a sound, he did!  Steve then was able to respond when asked to say “Hi, Bob” to the respiratory therapist.  His “Hi, Bob” was not his normal voice, but it was clear enough to be unmistakable. Today, we heard more, with the same adaptation of the vent.  He said “industrial engineer.”  Brad (speech therapist) then felt for the beginning of the swallow reflex.  Not enough to actually swallow, but could feel something moving in that muscle.  The speech session was rewarded with a little more of the coveted sherbet!

Brad also fashioned some lenseless glasses to which he attached a laser pointer.  He then made several charts with letters, trying to get the right size chart and letters for Steve to be able to point to as he moves his head.  He hopped up and down on a chair (Brad, not Steve) trying different heights and positions around the room for the chart.  Steve had some success, even though his eyes don’t track well together yet and we will practice a lot over the weekend.  This would be a real breakthrough as the spelling through head/jaw movements, one letter at a time and me guessing each letter/word is wearing us both out.  Some of you have witnessed or experienced how long one sentence can take! 

So thankful for each of you reading the blog and praying.

A visit with Bob and Sue Pinney

 From Nancy:

 Most of you who have been reading the blog know how eagerly we were looking forward to our visit from Sue and Bob Pinney, of Cary, NC.

They came to the hospital Monday as part of a trip to see their son’s family in Lebanon. We met like we were old friends. Sue and I have corresponded by email for weeks now, she sending encouragement and me sending questions.

Sue and Bob spent time with us and our daughter, Becky, who happened to be in town again. It was such a good visit. We talked easily and “compared notes.” There is nothing like meeting ones who have walked the exact path we are on. I tried not to stare at Bob, as I just took in the easy way he laughed and moved. Just as inspiring is the story of their love that was tested to the extreme and how they learned new ways to depend on each other, becoming even more “one” as marriage is meant to be. We are so grateful that Flora found them online months ago and for their continual encouragement. We look forward to being on the other side one day and doing the same for others.

Thank you, God, for sending this couple to help us find the way through this.

Nancy

(Please see the photos from the visit- Flora-------->)

Unity in prayer

From Nancy...

Thank you for your prayers....they mean everything! We see God's hand in specific answers daily.

We are asking for prayers that June is the month that Steve will again be able to swallow and eat and that he will say his first words in 3 months!  

Philippians 4:6 "Do not be anxious about anything, but in every situation by prayer and petition with thanksgiving, present your requests to God."