Thank you

Tim just walked in the door after a Thanksgiving evening visit with his dad. He had a wonderful conversation with his nurse, Erin. She told Tim, "Mr. Parsley is my favorite patient" and relayed some of her favorite moments with him: hearing his voice for the first time, and the day that Dad used his laser to play with Charlie. Dad was beaming listening to her. She also said that she has been reading the blog ever since she started there in April. This post is specifically a shout-out to you, Erin. Thank you for making Dad feel special, for caring enough to read this blog, and for working Thanksgiving night. We appreciate your hard work! Happy Thanksgiving!

Looking back in thanks (By Nancy)

Looking back in thanks.....
Steve delivered from a number of life-threatening crises, especially in early days of this illness and most recently from a quick acting pneumonia.  

For the medical team's thorough care  in the Drake LTAC unit for 7 months.  Doctors have said he is unusual in the few number of setbacks that are expected in someone bedridden and needing ventilator for so long

For insurance supporting his care.

For friends and family standing with us through prayer and help and visits too numerous to count

For an eyelid flicker that has healed into eyes that once again speak to me

For jaw movement that has been healed into speaking and swallowing and eating

For a head that needed propping up to full range of motion.  For shoulders that shrug, moving biceps.  For flicker of fingers that gives hope for more.

For breathing that continues to strengthen with the very important development of a gag reflex that came just this week

For the courage, patience, faith and hope that God continually revives in Steve...and me.  Daily.

Psalms 118:29. "Give thanks to The Lord, for He is good; his love endures forever."

Back to Drake we go... (Update by Nancy)

Prayers answered and Steve was approved by insurance and doctors determination of medically stable.  He returned to LTAC at Drake today.  He was soooo glad to be back in what he calls "his bed" you'd think it had sleep numbers!

We were welcomed back warmly by so many staff as they bustled around "hooking him up" and making him comfortable.  See side bar picture of two special Patient Care Assistants.  The smile on his face said so much and I found myself emotional to return to our medical and emotional support safety net.  Feels strangely like family (crazy uncle included-won't say who).  I headed home reassured and hopeful for his quick return to the markers of improvement he reached before this setback.  

Actually, while in ICU, Steve passed a swallow evaluation that broadened what he was allowed to eat before he went there!  Also, Chantelle, case manager for Drake, already rescheduled his appointment for him to see an ophthalmologist this Thursday.

It was such a blessing to have my brother Dick and my dad visit from Iowa this weekend.  Tim's family from Ft. Wayne and Becky and children came down (missed Alex, who had to work).   We all celebrated Evy's 3rd birthday.  Sweet time of reunion, tinged with longing for those missing.

We are, like all you who know him, broken hearted over the passing of our dear friend, Fred.  Even though I saw him and Sandy daily in our hospital vigil over the last week, I can't make it real.  I witnessed the trust and peace of two who know our Savior personally and know because of Him, though we cling to it, this life is not home.  

A week of sunshine and shadows in sharp contrast.   And of course, snow.......

 

Our sympathies

It is with great love and sadness that we extend our sympathy to Sandy Banta, on the passing of Fred.

FredandSandy, it seems like we always say their names as one word, have been friends with SteveandNancy for decades. They have shared many experiences- the most recent being last week- side by side rooms for Dad and Fred in ICU and sharing the same nurse. (ICU RNs have a 2 patient assignment).

FredandSandy have been a very essential pillar of support for Mom and Dad through this illness. Their names are mentioned over and over in the Thank You blogs.

Unfortunately, Dad is too sick right now to process his friend's passing. Mom would like to be the one to tell him, and she would like to wait until the move back to LTAC is certain. Tomorrow? Dad's vitals are solid but his spirit seems fragile. If you visit please steer clear of this subject. (Thank you)

The last 2 weeks in ICU, in addition to fighting infection, Dad has been extremely uncomfortable in his ICU bed and rather demoralized in general. He has asked repeatedly to "get him out of there" Mom is staying the night with him tonight. He finds great comfort having her nearby.


MONDAY MORNING UPDATE: Dad  will be moved back to LTAC at 4 pm today. She plans to talk to him about Fred on Tuesday morning. Please pray for comfort.

Wide angle view (an update by Nancy)

I say to the LORD, "You are my Lord; apart from you I have no good thing. ... Every good thing I have comes from you.... Without you, I have nothing good." Psalm 16:2

Flora did a great job of reporting on the past week in ICU.  If my view stays only on this room it is easy to fall into discouragement.  I need to remember that the visible progress that we can see now was in the making on the days when it was hidden from view.

Another way to view the current situation, when I am tempted to wonder if God "stepped out for a bit" is to choose to see Him at work loving us through other people....

- friends replacing the battery in our car in preparation for selling it

- a neighbor noticing our garage door was broken and stepping in to fix it

- cards and visits from friends, even after almost eight months.  Their faithfulness mirrors who God is.

- frequent checking in from LTAC staff and Dr Krause monitoring from there, assisting in trying to get insurance to agree about his return

- another friend offering to help me straighten out my network that won't recognize my email accounts

- a home cooked meal at an old friends house last night

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

Love to all,

Nancy

The news from ICU

This week has been rough going for both Mom and Dad. The cultures from Dad's urine came back + for MRSA so that has meant big gun antibiotics and contact isolation- anyone who enters the room must gown and glove. He will continue on antibiotics for one more week then will be cultured when he has been off antibiotics for 2 weeks and again at 3 weeks. If he gets 2 negative tests he will be removed from isolation.

Also, Dad has been on food and fluid restrictions due to the aspiration pneumonia. He has only been allowed one spoonful of ice every 20 minutes- crazy-making for all involved!  Although, this restriction looks to be loosening a bit as Dad passed a swallow eval this morning and has been approved for thickened liquids and his ice chip allotment has been increased to 1/2 cup per hour. They will do a more thorough swallow eval next week to see if they can return him to food food. The speech therapist and mom have both noticed more mouth engagement so reading his lips is getting a bit easier ( as in no longer impossible).

Weaning continues to be a mixed report. They have started weaning him again but he is not pulling the big numbers like before. He managed about 5 hours on Thursday and Friday-with those hours being divided into 2 sessions during the day. The Head of Pulmonology, Dr Scott, said that Dad's phrenetic nerve- the nerve that innervates the diaphragm, is still not engaging and that its repair and return of use is a "waiting game".

Insurance approval is again a player. The initial reply from insurance is that he is not allowed to return to LTAC (meaning the Drake unit where he has been for the past 7 months) and an alternate facility must be found. Dr Scott said that it is common for insurance companies to initially take a "short term and negative first look at a patient" when making decisions. We continue to pray for God to place him in the best possible facility (right now we trust that that is Drake) and are trying our hardest to look backward at all of the times logistical details have been worked out to our amazement, instead of fretting about the future. Much easier said than done.

ICU... Move Your Fingers!

For some reason, this video that Becky shot of Dad moving his left ring finger (!!) is only able to be viewed on a desktop. We are working on formatting it for all devices to see.

ICU/Pneumonia (Update by Nancy)

Yes this Halloween was scary.....I pray I never again see a vacant look in Steve's eyes.  I came in Friday at 10:30 and saw that he was unresponsive. I called for help and immediately about 10 medical staff, including unit directors and two doctors began working on Steve, bringing his vital signs back to normal in about a half hour.  Meanwhile I was asked to wait in the waiting room and they made sure someone came and sat with me, and retrieved updates.  Soon the doctor determined he should be transferred to ICU at Christ Hospital.

A CT scan from neck to knees showed a "big pneumonia" had taken over the lower left lung.  It moved in quickly and he hadn't even developed a fever.  They think the cause was aspiration of food.  He is resting comfortably now and is more alert than has been in days.  He will go back to LTAC when the pneumonia is on the run...probably in a day or two.  So thankful for LTAC staff who know how to work as a team in a crisis, clear decisions and thoughtfulness for the family.  Several have popped up to see how we are doing.

I echo Flora in thanking Sue Giegler and her parents, Lee and Karen, who sat with me all afternoon.  Also, for Rick Thomas who came and took Charlie to his house and then returned to sit with Steve for the evening.  Becky came in Friday night.  The plan was for her to accompany us to the neurologist visit on Monday but of course that has to be rescheduled.  She was just rhetorical reinforcement needed for the last few days!

Before this pneumonia, Steve got a haircut from our hairdresser,  Lisa, who came to his room.  He also got a beard trim, since he has given up hope on making it into Duck Dynasty!  Steve also received a special gift from our Sunday school class....a camera mouse so he can use his computer hands free.  Thank you to the Seekers class of Lakeside Christian Church, and our tech squad of Sam Slayden and Kristy Rickert who got the ball rolling.  Steve will enjoy getting back in the online world when he is feeling a bit better:)

And now for the silver lining in a pretty cloudy week of two steps back....Steve moved a couple of fingers on each hand when Becky and I were coaxing him to try!   God knows we needed this right now and we ask for more!

Thank you again for caring and sharing our journey through presence and prayers.
-Nancy