Yay! Wow! Whoo hoo!

Those are the replies that Becky (Yay!) Tim (Wow!) and I (Whoo hoo!) gave to Mom when she sent the following text...

"Pulmonologist just here. Dad will get chance to be off vent 24 hours and then if continues upward will get rid of it and get a different trach cuff. Likely to be this week;) Nutritionist said doing fine and hasn't lost any more weight;) Will send more breaking news as it happens :)"

PLEASE ADD YOUR HAPPY WORDS OF AFFIRMATION IN THE COMMENTS!! Mom will read them to Dad to help cheer him on in his progress!

Weekend update April 27th

Sorry about the delay in blog posts. I've been working back to back shifts, but Dad has been in good hands this weekend...

Nancy's sister Janet came for 3 days from Minneapolis. Janet stepped right in to the hospital scene with arm massages, spelling, finding things for Dad to listen to, and just being present. It was a huge blessing for the sisters to have more together time than either one can remember since marriages and families came along. Yesterday was Janet's birthday and they got away to dinner at the Levee. This sweet time only got sweeter when Becky and Diksha were able to join them for dinner and Diksha and her (great) Aunt Janet met for the first time. 

Becky and Diksha will stay until Monday afternoon. Janet went home this morning (Sunday).


Mom wrote the following:

"Thank you to our wonderful "la la" family (Flora's sister, husband and kids) who came with instruments last night and serenaded Steve with a concert!

The healing of Steve continues mostly below the surface but these systems are the support for all the rest. His breathing is improving steadily with less need for the ventilator. He can breathe on his own with only oxygen added as needed up to 14 hours yesterday. His blood work has been in range so well that it only needs drawn 1 time daily now. He has been increased in amount of food given through his stomach peg and is doing well nutritionally. He looks much better than even a couple of weeks ago. Steve's right eye is mostly open now and the left one starting to, kind of like a flower....a little at a time.

Becky caught a slight head nod yesterday...twice when she asked Steve if he liked what she was doing. He can also shake it side to side some.

If you are in town and can come visit Steve he would love to have you stop by....just give me a call or check the website Lotsa Helping Hands to see what slots are open. The slot each day on that site is 6-8pm, but you can come anytime around then. OR if that time doesn't work for you, just give me a call and suggest another. Friends who visit have read to him, listened to tapes or news with him, just talked about what is going on in their lives or suggested topics and asked if he wanted them to talk about those things. Steve can clearly "say" yes and no. (Jaw up and down is yes, side to side is no.) He expresses his needs through spelling using an alphabet system which is posted on the wall.  Don't feel you have to try it, but most who have done so have found success and when it gets muddled they just start over. We are so thankful he has been able to "talk" this way from the beginning.

That's all for now from the front of this war on GBS!" - Nancy

We got the big fat eye roll!

My sister, JJ, and her musical family "A Side of Taylors" as they are known on stage, stopped by the hospital to give Dad his own private bedside concert. JJ wrote the following...


"Steve is the most patient man ever! Really.

We were working through the alphabet with him and he was trying to tell us he was "still too low" after being repositioned. We had an extra letter or 2 thrown in and could NOT make out the phrase. He totally rolled his eyes! We caught it and called him out. Chris admitted that he would be awful on Wheel of Fortune. But Steve was willing to keep trying, as were we, and we finally got there. He spelled "Help me sit up." He was too far down in bed so we helped reposition him.

The mental and physical energy Steve spends in communicating has to exhaust him. And those deciphering bedside receive a large inoculation of humility and patience. Bless Nancy for doing this all day, every day. What we wouldn't do to communicate with our loved ones.

We loved seeing the new movement with the eye-roll. Not so much from our teenage daughter, but from Steve we'll take it any day!" - JJ Taylor

April 23

Mom was able to meet Dad's new nurse case manager today, Chantal. Every Wednesday the team, including the case manager, pulmonary dr., wound care RN, and all the therapists will have a patient care conference. Chantal transferred from the big Drake hospital where she had several GBS patients who recovered and 2 who were locked-in like Dad.

A summary of their report today:
~Patient is weaning 12-13 hours a day (yeah Dad!)
~PT says goal is to tolerate sitting position- currently at 55 degrees.
~Wound care addressing trach wound and wound on coccyx with aggressive treatment.
~WBC 11.7 yesterday and 12.2 today. Dr Krause to address tomorrow.

Other news from today:
~Chaplain stopped by to pray with Mom and Dad.
~It was decided that the bed he is on is the best bed for his current status.
~A different antibiotic has been ordered for his eyes.
~Sue Pinney was a great encouragement to Mom with her text messages today. (Thank you, Sue!)

Hospital life is exhausting and right now Dad's needs are pretty constant. We (Becky, Alex, Tim, and I) wish that we could be in Cincinnati full-time to help shoulder this burden. The two teachers are counting the days until summer break! In the meantime, we ask for prayer for Mom who is turning herself inside out to meet his needs... in addition to just plain missing him. I know all wives think that they are just talking to themselves at times, but it is situations like this that make you miss even the casual grunt of affirmation or distracted "um-hum" mumbled from behind the newspaper. We are looking forward to the day that conversation involves more than just physical needs and lab values. :/

We are very excited that Nancy's sister, Janet, will be in town tomorrow. We are certain that she will be a breath of fresh Minnesota air, doncha know! :)

Thank you all for your never-ending kindnesses towards our family.

April 21/22

This update was sent to me from Mom (Nancy):

"Some highlights from Monday and Tuesday:
Speech therapist Lindsay was a wonderful "highlight" of a different sort. She gave Dad a very thorough assessment and came back with a pad that Dad may be able to use as a call light and also an assisted listening device. She was talking about several things they plan to try toward the goal of Dad talking. I like her energy and ideas.

The OT and PT are equally engaged and came both days. OT sat Dad up as far as he would tolerate in the bed. Both were talking confidently about what they plan for him to be able to do. When the PT was assessing yesterday, she felt a muscle fire in his thigh and so did I! (Everybody stand up right now and do a happy dance!! Nurse's orders! - Flora) 

I met his new LTAC dr. - Dr Krause, and she was in here a couple of times yesterday and today. Took lots of time talking with me and seems like someone who can get things done, saying "I'll make sure. It's my name on his bracelet!" She didn't know what NAVA was but when I explained, she asked Pat (Director of LTAC) and came back saying, "I learned something!" She admitted they are learning a lot about how to care for a GBS patient because of Dad. While I'd rather there be more experience, at least they mostly seem eager to learn. We are getting along great. She said she was on the phone a lot during that terrible night of the bleeding. She said he is doing so well weaning he may not even need the bells and whistles of NAVA. He did 8 hours Monday and the pulmonologist said they should try 12 today. He just hit that! (Tuesday, I'm a day behind posting - Flora)

I told you I found a GBS/CIDP foundation support liaison in the literature they sent. Her name is Sally and she came and visited us today. She has volunteered for several years and has seen GBS as a respiratory therapist also. She can't do that work anymore because she has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) and limited use of hands and arms.

JJ spent most of Monday with me and brought lunch. Such good company.  :) (The housekeeper showed JJ the back elevator to the outdoor patio. Yeah for sunshine! - Flora)

There was another gift from my neighbor waiting on my step. Two friends visited Monday and Tuesday.

 Dave Giegler has a new project...he is organizing our storage area in basement especially the train stuff with the goal of getting our storage unit emptied.

Tonight, my Tuesday evening friends gave me a care package with a lime green really soft blankie and socks, a devotional book, and other stuff...and bought my dinner! Blessed.

I'm here tonight (Tuesday) and we are "watching" NCIS.  Heading home soon.

Dad asked for anxiety medicine yesterday and now gets Ativan."

Memory Lane Easter 2013

Love the enthusiastic way Poppa cracked Finn on the head with a confetti egg and then grinned about it. ;).  https://www.facebook.com/photo.php?v=10203667596915792

Easter

The transition to the Drake unit at Christ (room 3083) was smooth and welcome. Tim and I visited the unit yesterday, earlier in the day, and were pleasantly surprised to see that his room was ready and waiting: tube feeding hung, ventilator in room, supplies laid out, his personal belongings (including fan that we left behind last time) were all laid out. We ran into Bob, the respiratory therapist, on our way in and he said "I hear we get him back today!" This welcome was echoed by all the staff we ran into. After his big scare last time (bleeding trach) they were heavily invested in his journey. I'll post the picture of Lisa, the respiratory therapist who had her hands on Dad's neck for 3 hours that awful night. She was happy to see him back. We were equally pleased to see her. I introduced Dad to her (he has no memory of that time period) and told him he was in good hands.

Tim and I stopped by later that night (to double check that the next shift knew how to communicate with him) and were very pleased to hear his nurse teach us what had been passed on to him in report. Leaving your loved one in the complete care of someone else is such an exercise in trust.

Evy (age 2) was finally able to visit with him. She keeps asking about "Poppa in the hosipal" and we were stunned by her reaction. She didn't hesitate at all. She held his hand, talked to him, and kissed him goodbye. She watched his mouth and when he moved it she said, "He said Yes!" She looked past all the wires and tubes and just saw her Poppa.

This morning we had a bedside service. Tim read scripture, the boys led communion, and Emma read Psalm 121. We ended our service by standing while the Hallelujah Chorus was played on cd. "For The Lord God Omnipotent Reigneth. Hallelujah."

Dad was especially tired this morning and told us he had a bad night. He was weaning today and it looked like very hard work. As much as we hoped it would be, it just wasn't a "put the bunny ears on Poppa" kinda day. We told him we gave his Easter basket full of candy to the nurses and he approved. He and Mom plan to take a nap together this afternoon.

We got to enjoy a pleasant Easter picnic at the park with Mom. Simple and sweet.

Happy Easter Everybody!

Enjoy our new family theme song...

http://youtu.be/JPtIv2lnkTY

April 19th

Tim and I had a great late night visit with Dad last night. As soon as he heard we were there he opened his eyes for us. Tim asked if he could see and he motioned yes. (Then he closed them for the rest of the visit) We filled him in on all the happenings lately and he gave great expressions using just his jaw. When we told him about the blog having close to 8,000 pageviews he opened his mouth wide like "wow." When we told him about Finn's new broken arm he gave a slow side to side no like "oh no!" He kept moving his jaw up and down so we asked him if he had something he wanted to spell - nope, he was just affirming the conversation. It was a very sweet visit.

Today might be a big day - possible bronch and move to LTAC. We are waiting to talk with the doctors. We will keep you posted...

Oreos for everyone today!!

A big fat HAPPY 16th BIRTHDAY to Steve's oldest grandson, Joshua Thompson!! Josh, we are so proud of your amazing saxophone skills and your accomplishments in Scouts!! (Life Scout Rank) We love you! 

Unfortunately, you can't get a badge for the sailing expedition you and Uncle Tim took at Topsail Beach last year... :) I posted the "before" picture when Poppa Choo Choo was giving you and Uncle Tim a sailing lesson...I won't post the "Oops!" pics :) Fun memories. 


Today's update from Mom:

Wean means he is being assisted 50%. He weaned 9 hrs yesterday. Has been weaning since 8 when I got here.

Dr. Scott (Lanka partner) was just here. Really like him. Said, "We don't want to push the wean too fast but he is doing great!" When he said, "It's just a matter of time now." I said "Have you seen this severity before?" He said "yes" and has two patients in his pulmonary practice now who recovered from this years ago. I told him "Finding a Dr who has had severe patients like this and who recovered is a needle in a haystack and he is our needle!" He laughed.

More good news: Infectious disease RNP said no evidence of any infection and only 2 more days on antibiotic. WBC= 6.9 (!!!!!! - exclamation marks added by Flora on behalf of all of us!)

Next good news: Dad's right eye was half open when I first arrived. Then, later, when I shared that our Sunday school class gave us an unexpected gift it flew half open again!! He kept it open while we were spelling. His left eye opens a slit now, like his right one did a few days ago :-)

(To celebrate the achievement with his eye movement, I am adding the oh-so-flattering picture of Dad doing the Minute-to-Win It Oreo challenge at Becky's house a few Memorial Days ago! Those same nerves that allowed him to work the Oreo from his forehead to his mouth - and win the contest! - are the same nerves we are praying for now! Go ahead, celebrate by eating an Oreo today in honor of him!)

Natalee says Charlie hasn't howled at all :)