Scary! (Halloween)

Dad has been transferred to the 7th floor ICU at Christ. He is being worked up for infection and has a CT scan tonight. They have started him on multiple antibiotics and already he is more clear and focused than he was this morning. He has had an eventful week- peg tube replaced due to a crack, new trach, and a bronchoscopy. Becky is heading to Cincinnati tomorrow as previously planned. Thank you to my parents and Sue Geigler for being bedside with Mom today.

Happy 67th Birthday!! (update by Nancy)

Thanks to all of you who showered Steve with cards and prayed and fasted on his behalf.  It was so comforting to learn the names each day of those who were holding us up this way!   No less than 57 people (that we know of) fasted one day during the week.

He is slowly being returned to us one millimeter at a time- this week we saw muscle flexing in both of his forearms!! So while it's up and down on a daily basis (as those who came to visit on a day when he could barely stay awake have observed) it is steadily a climb of improvement when seen from the longer view!

His birthday was a low key day, which was just right.  Steve was smiling and nodding as I read the cards to him.  Even the one from wonder dog, Ruby, in California!  Diksha drew one of her special cards, showing a past memory of helping Steve with his trains with Molly (old dog) and prior cat Ziggy in the picture:)  The staff at the hospital also made a card and signed it and put it on Steve's door.  He even received a birthday serenade from a staff member, Kianna!  I missed it!  That evening, several friends came by to share Servatti's cheesecake (see Rick feeding Steve this treat, sans crust!)  Steve talked with him using his special valve and really enjoyed seeing everyone.  They ended the evening praying over him as they laid hands on him.  It was really special.

Steve's pulmonologists have several approaches to the weaning and yes, he did go 55 hours straight off the vent last week.  They then read his "numbers" and decided it might have been a little ambitious and now he is asked to hit 8-12 each day and rest at night on the vent.  Confusing for sure, but I have nothing to gauge this by, so I have to temper my urge to insert myself and say "Of course, we should push this!"  (Sometimes I do exactly that!)  He has two appointments lined up that should shed light on where we are and what more can be done.  They are Nov 3 with a highly regarded neuro muscular doctor who saw him when he was in his first ICU and Nov 4 with an ophthalmologist with CEI who will assess his eye situation to see what can be done to make them track better together.  Right now, he has to squint when he does his communication board and can't see computer or TV as well as he would like. Please feel free to send Steve an email on his new account slparsley@microbuzz.com.  Then, when he next goes on, he can see you there:)

We appreciate so much your faithfulness in following this path with us.

Thank you everyone,
Nancy

Faith of a child

We are humbled by the number of people who have stepped forward to fast and pray this week- friends that have been friends for decades, friends of barely a year, friends all over the country, and friends in different parts of the world! The list of names is beautiful and we treasure every one! Thank you all!

Our kids decided to join in and fasted from after school until 9 pm when we had a family "Happy Birthday Poppa" party with a cookie cake. This evening they spent some time in their rooms praying and Evy and I sat on the couch and prayed together. Her  prayer was so sincere. "Thank you God for Poppa. Please make Poppa's arms better so he can hold me. Thank you that Poppa loves me."

Treasure in jars of clay

In the very first blog post in March, titled "The Beginning" I wrote..."Hard to believe that this whole crazy life-altering syndrome only presented itself one week ago! So much has happened this week. In this post, I (Flora) will attempt to catch everyone up to speed on events to this point and then we will update daily as he continues to improve. We look forward to the day that Dad can read this blog on his own and marvel, along with us, at all of the ways provision came at just the right moment. I will try to record the good, bad, and the ugly so that Dad already has an outline ready when he decides to write his book." Well, beautiful blog readers, Dad was able to read those words for the first time yesterday, for himself. (see pic) Mom said he started at the beginning and read to March 30 then was tired...no doubt!! It's an exhausting story. I can't imagine reading your own story- when you've been there for all of it but not always present. Even for those of us who were present it still seems like a bizarre dream.

Dad, as you read this blog I hope, like I initially wrote, you can "marvel at all the ways provision has come at just the right time," but I hope you also can tangibly see that you are SURROUNDED by people who love you and have been caring for you and Mom in ways sometimes too "small" to make it on the blog (running errands, checking in by phone, sending a card, sitting quietly at your bedside, etc.) because there were so many instances like that and the blog would have become overloaded with endless lists of "Thank yous!"  and sometimes in ways too BIG to make it on the blog- generous acts that we chose to keep private because they were so monumental.

I tell you what, this blog has been hopping these last few days as I have had to continually update the number of people who are saying they want to pray and fast on your behalf this week. I've added 13 people just since I started writing this blog entry. A friend of my side of the family, whom I don't know if you ever have meet, who is going through some significant health issues herself, said that she would be praying and fasting for you this week. I was humbled to tears and told her that "we were praying for HER!" And she wrote back-

"God knew what He was doing when He set up the church. It is so good for us to support one another. Knowing I can pray for someone else helps me to get my mind off myself and makes me feel like I'm doing something. God knew we would need each other and feel the most satisfied when helping one another. I really believe that!!"

Also, I hope you find encouragement in how far you really have come. We have tried to write this blog honestly but we have at times chosen to emphasize the good over the bad. Each day was so full of both. We tried to give a complete picture, but each day, especially early on, was filled with so many pieces- many of them dark or confusing. Like when I'd write something like "His BP has been alternating between high and low but has settled down now. Goldilocks would approve." What I wasn't writing was that I was sitting in the ICU room unable to peel my eyes away from your A line monitor that showed your BP to be "84/55 at 4:15 am" then jumped to  "202/109 at 4:23" then 10 minutes later dropped to "108/56" (I looked back at the notes I was keeping that night. It was crazy! Every few minutes you would jump or drop 100 points!) It seemed like those days we lived minute to minute. Like the day you got transferred from UC to LTAC, and I told Tim, "Something is wrong. Those vital signs are within normal range but not HIS normals." So we sat staring at your machines and Tim (as a way of coping with my rising panic) made a chart and set his alarm for 1-minute intervals and charted your changes...sure enough- within 30 minutes your trach was bleeding and thus started the events of March 27th that included emergency surgery, a raging infection, and a stay in 2 more ICUs.

When I would write things like "Tim is sleeping bedside" or "Becky and Mom stayed at the hospital in the sleeping room" it was because the nights were often terrifying and we wanted to be close by. The trach dressing changes were the worst- your heart rate dropped to the 20's multiple times. It was a horrible awful time and I can confidently say that we only made it through because God carried us.

Why am I emphasizing how bad you were? Because, even in the darkness we felt God at work. Your friends and family are praying for you this week and we are confident that God will be glorified.


1Corinthians 4

 1 Therefore, since through God’s mercy we have this ministry, we do not lose heart... 5 For what we preach is not ourselves, but Jesus Christ as Lord,and ourselves as your servants for Jesus’ sake. 6 For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ.

7 But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.8 We are hard pressed on every side, but not crushed; perplexed,but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. 10 We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who are alive are always being given over to death for Jesus’ sake,so that his life may also be revealed in our mortal body. 12 So then, death is at work in us, but life is at work in you.

13 It is written: “I believed; therefore I have spoken.” Since we have that same spirit of faith, we also believe and therefore speak,14 because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you to himself.15 All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.

16 Therefore we do not lose heart.Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

Please join us

Dear beautiful blog readers,

We are approaching 2 big milestones -- 7 months since onset of this ridiculous syndrome (the 9th) and Dad's 67th birthday (the 16th).

In honor of Steve's birthday, we are wondering if there might be 67 readers (or more?!) who would be willing to fast and pray one day next week? You pick the day and you define the structure of your fast. If you wouldn't mind, shoot me an email (florasuern@aol.com) with the day you pick and we will keep track of how many people are fasting each day and I will update the totals below, but keep the names private. I will only share the list with Steve and Nancy so that they know which friends are lifting them to the Father that day.

Thank you for your steadfast love and devotion to our family!

Again, truly I tell you that if two of you on earth agree about anything they ask for, it will be done for them by my Father in heaven.
 Matthew 18:19

12th Sunday- 2 people signed up
13th Monday- 9 people signed up
14th Tuesday- 7 people signed up
15th Wednesday- 5 people signed up
16th Thursday- 17 people signed up
17th Friday- 7 people signed up
18th Saturday- 10 people signed up

Big goals/ New email (by Nancy)

Steve is now steadily chipping away at his goal of being off the ventilator. After getting his medicine changed by Dr. Krause, his anxiety over learning to breathe again has lessened greatly. He is now back on track and heading toward 16 hours at a stretch!

Sam Slayden has Steve set up on a new email account. Apparently, I tinkered with his old email too much and we can’t retrieve his password. Anyway, the new email is slparsley@microbuzz.com. Those of you who wrote “welcome back” emails a few weeks ago….those are still there for Steve to read when he can. Right now, he is often too sleepy or concentrating on breathing and doesn’t go to the internet much at all. But expecting that to change.

Steve will have another swallowing test this week as he did well in managing mac and cheese, beans, and cut up pears.

It was wonderful to have Tim here for a weekend, followed by Flora for the doctor visit on Oct 2, and then Becky last weekend. All these visits cheered Steve so much and were such a comfort to me. Thanks also to friends who visited over the last two weeks and the gift of a special “concert” by two of our extended family, Lydia and Mason Taylor, who sang “Life Goes On” to Steve last Sunday when they visited with Lee and Karen (Flora’s parents).

I am looking forward to visiting friends, Sandy and Larry Gabbard, in Tennessee, for two nights later this week. Thanks to those who are visiting Steve during that time. 

Love,

Nancy

Neurology appointment October 2nd

On Thursday, Dad traveled by ambulance to the neurologist's office for an appointment. He was accompanied by 2 EMTs and a Drake RT. Mom rode in the front seat of the ambulance and I met them there. This already-complex situation became even more complicated when there was a fire next door at UC Hospital which created a detour.

The appointment itself was rather straight forward: history and physical assessment followed by a recommendation for a follow-up EMG at the end of the month and a follow-up appointment with a Neuromuscular specialist.

Dr Karamchandani stated, "There is not an order that things come back online. There is no way to predict the timeline. Continued improvement is always a good sign. As a general rule we won't know the full extent of recovery until 1 year to 1 ½ years out." He repeated multiple times that Dad is showing good improvement. He encouraged Dad to continue to be aggressive about weaning and stressed the importance of supportive care in preventing bed sores, infections, and blood clots.

Dad had to leave 2/3 of the way through the appointment because the transporters had run out of oxygen in their tanks and needed to get him back to the main supply in the ambulance. Their vent system felt different to him and he needed to be on 100% oxygen the entire time (normally on 30%). Dad was rather uncomfortable on the gurney and didn't have much to say during the appointment, even though we traveled with his laser light and big letter board. Mom and I remained behind and finished the consultation. Jennifer (MA? PA?) made the follow-up EMG appointment and told us, "I believe that I have heard of Mr. Parsley before but not by name...was Ben Kleindorfer working on a call light for him?" We are glad that others are investing in his story. I asked the Dr. if there was any possibility of his being in a clinical study or being the subject of a research paper. He approved of the suggestion and said he would definitely look into the possibility.

When he was settled back at Drake I said, "I bet you never thought you'd be excited to get back in this bed," and he smirked. I asked him what he thought of the appointment and he spelled, "I only listen credibly to those who forecast a 3-week cure. I was sort of counting on dancing on my birthday (Oct 16th), so much for willpower. I am not impressing them with my breathing yet. Actually, there were three days I fell back to vent but otherwise I was off vent. I could do full days if it weren't party central. My primary goal of late is to improve my status."

I had to return to Fort Wayne shortly after getting him settled, but told him that now that I've carried his spare medical supplies in my purse, our relationship had jumped to a new level. He shrugged and smiled and told me that he was glad I had come. Glad to be there, Dad. Keep up the hard work and prove them wrong. ;)