When the doctors began warning me in early December that Dan’s struggle with GBS was going to be “a long haul,” they didn’t tell me (indeed I don’t think anyone suspected) that it would be a long haul pulling a wagon full of rocks that keep falling off.

That’s happened in the last couple of days. People say, two steps forward, one step back, but it’s more accurate to say with Dan’s “fragile” health that it’s five steps forward, four steps back. He is running a fever again, white count up, urinary tract infection, possible other issues in his abdomen. Please pray.

It was in the midst of this that someone I’ve never met, a very accomplished and well-published author Diane Stortz, wrote me that she’d been following this blog and had distilled some of the things I’d said which helped her. The blog is http://abibleplace.blogspot.com/2012/02/do-you-know-where-your-hope-is.html

Reading her blog reminded me of a time I was sitting in church and saw a handwritten phrase in front of our daughter Celeste’s open Bible. It was very helpful and meaningful for me, sitting and partaking at that moment of the Lord’s Supper. Imagine my surprise when she told me it was a quote from one of my books. The same thing happened as I was reading Diane’s blog. I REALLY, REALLY needed to hear affirmations of faith yesterday.

I guess that’s because what I said two months ago was true then and is true now, no matter how frustrating the process is. We humans forget things, even important things, when our bodies and our time are clamoring for our attention.

I am reminded of the fact that God commanded the Israelites who crossed the Red Sea to have an annual remembrance ceremony in which they recounted everything that had happened, and how faithful God had been to them.

Of course Jews even today do the same thing every year. See the commandment in Deuteronomy 6:21-25. This phrase, “I was a slave in Egypt,” is repeated not only at Passover all over the world by heads of Jewish families today; the same thought was echoed in a speech by then-president of Israel, Weitzman, in 1996 when invited to address both legislative bodies of the Federal Republic of Germany: “Only one hundred fifty generations have passed from the Pillar of Fire of the Exodus from Egypt to the pillars of smoke from the Holocaust. And I, a descendant of Abraham, born in Abraham’s country, have witnessed them all. I was a slave in Egypt. I received the Torah at Mount Sinai. Together with Joshua and Elijah, I crossed the Jordan River. I entered Jerusalem with David, was exiled from it with Zedekiah, and did not forget it by the rivers of Babylon. When the Lord returned the captives of Zion, I dreamed among the builders of its ramparts. I fought the Romans and was banished from Spain. I was bound to the stake in Mainz. I studied Torah in Yemen and lost my family in Kishinev. I was incinerated in Treblinka, rebelled in Warsaw, and emigrated to the Land of Israel, the country whence I had been exiled and where I had been born, from which I come and to which I return.” (Israel Ministry of Foreign Affairs official Web site: http://www.mfa.gov.il/mfa/go.asp?MFAH01eh0 )

So, Diane borrowed my faithful words, and I borrowed them back. Help yourselves, dear friends. Though I don’t respond to your comments here or on Facebook (it is literally impossible for me to have the hours in the day to do that, and I apologize), I love you, treasure your support, and am happy to help build your faith upon the crucible of this situation. Give God all the glory. He deserves that, more than we could ever imagine.

It is now exactly two months since Dan was hospitalized. He is doing much better, and we are so grateful for your help and prayers.

Here is another poem I wrote long ago, but it applies to this situation.

THE WAITING

I sit beside your sleeping form, and I wait.
Like a sufferer who reclines in the
Dark, looking for the dawn
He knows will come, but
Wondering how the darkness
Can ever be overcome

I sit beside your sleeping form, and I wait.
Like the woman who rests her hand
On her swelling abdomen and counts
The bloodless months
But who cannot really believe
Until she feels movement

I sit beside your sleeping form, and I wait.
Like the mourner who nods
Under flickering wake candles
And counts resurrections promises like a rosary

I sit beside your sleeping form, and I wait.

Dan’s room must seem chaotic to him. For one thing, with all the machines and IV poles and other things he needs, it’s snug in there. He has so many physical challenges which must be addressed. Day and night being turned over every two hours (which can take up to ten minutes if he is not positioned comfortably considering his improving torticollis and ear issues), having his throat and/or lungs noisily and traumatically suctioned every hour (or more if he needs it), getting heparin and insulin injections and having his skin pricked for blood sugar tests several times a day, changes of medications in his pic line and the hanging of new IV fluids, the addition of medications and other liquids into his gastric tube in his stomach, machines that make constant operating noises (like the ventilator) and alarms that go off all the time, housekeeping twice a day cleaning his room, physical therapy every day, wound care nurse examining at him, at least one or two doctors’ visits, drawing of blood for labs, occasional Xrays, palpating his abdomen every two hours and emptying fluid bags, putting in eye drops because he falls asleep now with one eye partially open, lubricating his lips and the inside of his mouth, checking his backside, bed baths and oral care and other things that have to be done.

He is also beginning to do respiratory “trials,” where he is disconnected from the respirator and his own diaphragm and muscles do all the work with oxygen supplied through the tube. He’s up to 50 minutes, and that’s like hard exercise for you and me. Yay Dan!

And of course almost all of these things are discussed at his bedside. Lots of events, and lots of words. And of course these events and words are on days when everything goes smoothly.

The new issue is that Dan really wants to communicate with family and with nursing staff. He can nod or shake his head to answer questions about pain levels or positioning or suctioning. We have tried with varying success to hold up an alphabet chart to help him spell things out but that is usually just frustrating.

We have learned to read “I want” on his lips. Yesterday Ryan and I spent about ten minutes trying to figure out what he was saying after “I want.”

He was saying, “I want…”

“I want….”

“I want….”

“…. to dance.”

That’s Dan :)

Hi, it’s Ryan-

You can tell a lot about a person’s character when things aren’t going well for them. Anybody can be a good sport and a gracious person when they win. How does that same person act when they lose? Do they throw tantrums? Blame others? Cuss and throw things?

I am sorry to use the (poor writer’s) crutch of sports analogies, but I am a poor writer, so please humor me: I feel that the best way to find out the character of a man is to play a sport with him. Does he make his teammates better? Does he cheat or cut corners? Is he a ball hog? Does he talk trash? Does he play defense with as much effort as he plays offense? Is he a good shooter, or simply a person who shoots a lot? Does he want to win or is he content to look good while losing?

One of my favorite things about my Dad is that he is the same person whether he is winning or losing. He is someone you want on your team…no matter what your team is. He brings far more to the table than he takes off of it. His true character is revealed in his adversity. He has preached the Gospel effectively for two months without saying a word.

He told me that he had a dream during his first bout with GBS that was very vivid to him: He was in an arena, and he was beaten up and hurt. He looked up into the crowd, and saw Mom, Celeste and I (among many other of his close friends and family) cheering for him as loud as we could. “FIGHT!” we’d yell. “GET UP!” we’d scream. “DON’T QUIT DON’T QUIT DON’T QUIT!” we’d repeat over and over.

He told me that this dream helped him get through the toughest time.

We’re cheering for you again, Dad, with one voice. Scotts Don’t Quit!

Do you remember those “choose your own adventure” books for youth, published back in the 1980s and 1990s? Each book would start out with a scenario, and after a few pages, the book would offer the reader a choice or two. One choice would take you to page A to continue the narrative, and choice two would take the reader to page B. The choices kept branching out from A to C or D, and from B to page E or F; and so on.

The idea was that your choices in a decision would bring consequences—some you could foresee, some that would surprise you.

When I was driving in to church this morning, it occurred to me that I didn’t choose the adventure I’m on right now. I don’t like this book very much. I’m in the middle of it, and not really sure how I got here, even though I can backtrack through decisions I made, I reach a blank wall at some point.

I’ve been talking to Dan off and on, all afternoon, and see the discouragement and surprise on his face. He lifts his shoulders up and down, as if to say, maybe this was a dream and I’m waking up from it. He ends up by shrugging them, as if to say, “I don’t know.” He still mouths the words, “I want to go to MY room.” He is baffled and disappointed. I’ve been married to him 38 years. I may not interpret all the words he says, but I know what he means.

He didn’t choose this adventure, I can guarantee you that. And who would choose such a dreadful and frustrating disease? There’s no way to predict it nor to prevent it. There’s no way to treat it except to do some things (like plasmapheresis and gamma globulin injections) to perhaps shorten it or make it less intense.

It’s been about five weeks since anyone in the medical field told me they thought Dan was going to survive this. He’s a man with many, many health problems. Guillain Barre will run its course. If he can outrun it.

Five weeks: until the last two days. Dan has finished his antibiotics, the pneumonia is retreating (except for the involvement of the left lung which preceded the pneumonia is still there), his kidneys seem to be functioning well, the sores on his backside are healed, and there is talk of removing a tube tomorrow. (Don’t ask.) But for the first time in over a month, doctors are saying they think he might eventually get off the respirator.

Best news of all, yesterday Dan was for trials disconnected twice from the respirator (which is more and more letting him do the breathing); and for 20 minutes, then 30 minutes Dan breathed oxygen through his trach collar. Today he did it for 45 minutes. That is HUGE for him, and the respiratory therapist says it’s a sign the GBS is retreating from his lungs.

It wears him completely out to do all his own breathing, though.

Essentially all other functions below ribcage are problematic but we can expect improvement as the GBS recedes from there. I keep remembering what they told me –“Long haul,” and “a millimeter a day.”

The doctor talked to me about our tentative decision to have some visitors other than the ones who sit with Dan while I write. The medical consensus is that too many visitors, or too intense visits, or any visit that is over 5 minutes will agitate him.

So if you love Dan and want to come see him, limit your visit to a five-minute soothing visit with him, and the doctors say no more than two people in the room with him.

In conclusion, our “adventure” seems to be taking a much more positive turn in terms of Dan’s physical condition and road to recovery.

In a way, we did choose this adventure, I guess. When we submit to God and tell Him we will follow, we will be faithful, we will not turn back; we have to trust that He is accompanying us, no matter how painful the road.

Long ago I wrote a poem that expresses that, and how essential it is for others to pray for us as we travel. May it bless you.

NIGHT PASSAGE

This dark night is made tolerable
Only by you, and the distant light
That blinds us when we confront it,
So that we may only proceed
With eyes lowered.

The ship beneath us heaves us about;
We make no pretense of balance
And now we find we no longer protect ourselves
From the bruises from impact
Of timbers and flesh.

The journey stuns our spirits and senses.
The destination haunts us,
Eludes us sometimes like a painful memory.

But we are on a night-shrouded ship
Bound for Ninevah
Because we said we’d go
Anywhere
He asked;
And if I must weep,
I weep only
For those who must travel alone.

I’m happy to say that Dan is awake more, and is trying hard to communicate. He is looking around, moving both shoulders vigorously, and mouthing words.

I sat down and talked to him today and asked him if he knew how long he’d been hospitalized. He shook his head. He looked and looked at me when I told him two months. About that time a nurse and an aide came into the room and I looked away. He was trying to mouth something, so I tried to use an alphabet chart to try to ascertain what he wanted to say. I got to R and then to O, and then I could tell what he was saying: Room. I looked closer and he was saying, I want my room.

It broke my heart to tell him this was his room. And had been for two and a half weeks. I pointed to all the cards and the flowers and told him how much people love him. It was too much for him. He closed his eyes and shook his head.

He is still trying to process all the people who come in his room to care for him. I think it would be all right for him to begin to have a few very, very short visits in the late mornings and in the late afternoons after the middle of next week. I know that many people want to see him. I walk a fine line between protecting him and trying to be sensitive to the people who love him and miss him.

Now for the scary part. He is beginning to cough, and when he does that he can get choked on the mucus in his lungs and desaturate his blood. He had an incident yesterday when that happened and the room filled with doctors, nurses, and machines. It is no exaggeration to say that there was a point at which his life was in danger. It frightened the respiratory therapist so badly that she cried all afternoon. The doctor reminded me that Dan’s health is still very precarious.

Our lives are all precarious, are they not? Who of us can guarantee we will awaken tomorrow? For that reason I am sobered by the important things in life. Nothing is more important than the ways we show love: love for God, love for family, love for church and friends who serve so openheartedly. Thank you to all of you who have so faithfully shown love to our family. We are so grateful.

.

Dear friends,

We are now approaching the two-month mark of Dan’s illness and hospitalization. I look at the calendar and am amazed at how much has happened, and how little.

My friend Sharon knew a little old lady who lived for several years in a nursing home. One time Sharon asked her how she was doing.

“Well, I’m a lot better than that time I was so bad,” she answered.

It can be accurately said that Dan is a lot better than the time he was so bad — which was midweek last week. Which means that he is approximately where he was about a week before he left the ICU. He has about the same communicative abilities (opens both eyes, both of which however seem to be focusing better or at least pointing in the same direction :) Yay!) And he mouths words but unless he is repeating a song (which has happened three times now), we don’t know what he’s saying. (I suppose he is going to be REALLY annoyed with everyone when he gets his voice back: “Water? You didn’t want water on a sponge? You wanted me to read the Wall Street Journal?”)

Humor aside, he sleeps almost all the time (only awake and communicating a few minutes a day total). I anticipate that now that he is coming out of the pneumonia he will regain some strength and stay awake longer. He is still seriously, precariously ill. (Even getting a bed bath or moved from bed to bed wipes him out for a full day.) Dan has a long, long way to go. There are still substantial health issues but in general they are all going in the right direction.

(I’m afraid to say that out loud.)

One specific is that his lungs seem to be responding very slowly, but responding, neurologically. This gives us hope that he can be weaned from the ventilator.

We are all being held together by prayer, dermaplast and IV tubes. He’s got so many tubes in and out of his body I’m just waiting for the day when a harried nurse hooks his iPod into something.

I simply could not make it without my wonderful children who call me several times a day and ask me if they can do something for me, bring me something, take a burden off me. My extended family is supportive and helpful. My church family has provided salvation in a very literal sense, both caring for my needs as I live in an institution 12 or more hours a day and respecting my privacy and introverted nature which has been stretched to its absolute limit by continual human contact.

Since November 30, 2011, I have only bought or prepared for myself a handful of lunches/dinners. (I make my own breakfast, but that is only after refusing to let my sweet brothers and sisters bring it to me.) The elders of the church and many many members have made me feel protected and cared for.

Though many undoubtedly feel affection for me, I know that this great service is a sign of respect and service for a man who has taken complete strangers into his home repeatedly, has raised hundreds of thousands of dollars for charities (especially those which serve children such as the Christian Children’s Home and children’s cancer charities), served his church and the many, many boards on which he has served unselfishly, and had a tender heart for anyone in need.

In his helpless condition, he is rallying people to help each other, honoring someone who cannot now thank them.

But I can: Thank you and bless you. Please keep praying.

First of all, I have to share with you some words that I have not heard (except once, and that referring to Dan’s increased facial expressions and eye movements when they began to return several weeks ago).

Dan’s pneumonia is “much, much better”!

God be praised! Dan is still struggling with multiple other serious issues (his next kidney procedure is in about two weeks, for instance) but none that are threatening his life as the pneumonia did up until it began to resolve.

He is blissfully unaware of his redemption, and is hardly responsive at all, just sleeping deeply unless he is awakened.

All the labs, all the exams on his lungs say they are improving. I told the doctor, “Thousands of people have been praying for him. I expected him to get better.”

I will go home now, for the first time since Thursday morning. Ryan will be here tomorrow. We continue to ask that you not visit until further notice. Dan probably won’t respond and needs to continue to rest quietly.

<< Psalm 103 >> New International Version 1984 Psalm 103

Of David.

1Praise the Lord, O my soul; all my inmost being, praise his holy name.

2Praise the Lord, O my soul, and forget not all his benefits—

3who forgives all your sins and heals all your diseases,

4who redeems your life from the pit and crowns you with love and compassion,

5who satisfies your desires with good things so that your youth is renewed like the eagle’s.

6The Lord works righteousness and justice for all the oppressed.

7He made known his ways to Moses, his deeds to the people of Israel:

8The Lord is compassionate and gracious, slow to anger, abounding in love.

9He will not always accuse, nor will he harbor his anger forever;

10he does not treat us as our sins deserve or repay us according to our iniquities.

11For as high as the heavens are above the earth, so great is his love for those who fear him;

12as far as the east is from the west, so far has he removed our transgressions from us.

13As a father has compassion on his children, so the Lord has compassion on those who fear him;

14for he knows how we are formed, he remembers that we are dust.

15As for man, his days are like grass, he flourishes like a flower of the field;

16the wind blows over it and it is gone, and its place remembers it no more.

17But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children—

18with those who keep his covenant and remember to obey his precepts.

19The Lord has established his throne in heaven, and his kingdom rules over all.

20Praise the Lord, you his angels, you mighty ones who do his bidding, who obey his word.

21Praise the Lord, all his heavenly hosts, you his servants who do his will.

22Praise the Lord, all his works everywhere in his dominion. Praise the Lord, O my soul.

Dear friends,

For those of you who are local, thank you so much for respecting our wishes about visiting. Yesterday Dan had a very traumatic event with a blood clot in his foley and backup of his urinary system. It was frightening and distressing.

However, today was worse. His left lung has quickly become heavily involved — whited out, on the XRay– with pneumonia, and he had an episode that filled the room with nurses and techs. He is wan and spent.

The upcoming day or two are crucial. Please pray for him. Though Dan and I are resting relaxed in the loving presence of God, I am borrowing your strength.

Hi, it’s Ryan. Until further notice on this website, we are requesting no visitors to the hospital. I’ve asked Mom to place a sign on Dad’s door that says “No Visitors-No Exceptions”. If you are signed up to bring a meal for Mom, please leave it at the front desk for her. If Mom, Celeste, Noel, Kimber, or I need something, one of us will contact you directly. Please also do not call Mom’s cell phone or e-mail her asking for status updates. When there is information to share, it will be posted on this site by one of us. If you are scheduled to sit with Dad so Mom can write, please continue to do so. You are the exception to the rule. Thank you all for continuing to pray for Dad, and for our family. We need it! Scotts Don’t Quit. RVS