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!
Tuesday, April 29, 2014
Sunday, April 27, 2014
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
Wednesday, April 23, 2014
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.
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."
"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."
Sunday, April 20, 2014
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.
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.
Saturday, April 19, 2014
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...
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...
Thursday, April 17, 2014
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 :)
Wednesday, April 16, 2014
Train Talk
WBC=8.4!! Dad will stay on antibiotics for 3 more days. I'm not sure if this is true but I like to think that every ounce of energy he doesn't have to spend fighting infection, his body can pour into regeneration. Knit, nerves, knit!
The goal is to move to LTAC by Friday or Saturday - after he finishes 5 doses of IVIG. I sure hope this happens because I would love for our kids to be able to visit this weekend. We might have to put the bunny ears on Poppa Choo Choo this year. ;)
Dad is visiting with his "Train guys" this afternoon. He has a great group of guys that he gets together with weekly (?) to work on model train layouts. Poor Mom had to stay to translate. You know how much she loves staying indoors to talk trains - especially on a beautiful sunshiny day!! Ha! Extra wife points awarded to her.
(Side note to Nana [and Poppa Choo Choo when he can read this] - Finn drew a train to be displayed tonight at his 3rd grade performance. I told his teacher- it's in his genes.)
Dad was unable to wean yesterday because "the floor was too busy." Mom sweetly but firmly let them know that this was unacceptable. She persisted today until they started to wean him. Last I heard, he was going strong.
The goal is to move to LTAC by Friday or Saturday - after he finishes 5 doses of IVIG. I sure hope this happens because I would love for our kids to be able to visit this weekend. We might have to put the bunny ears on Poppa Choo Choo this year. ;)
Dad is visiting with his "Train guys" this afternoon. He has a great group of guys that he gets together with weekly (?) to work on model train layouts. Poor Mom had to stay to translate. You know how much she loves staying indoors to talk trains - especially on a beautiful sunshiny day!! Ha! Extra wife points awarded to her.
(Side note to Nana [and Poppa Choo Choo when he can read this] - Finn drew a train to be displayed tonight at his 3rd grade performance. I told his teacher- it's in his genes.)
Dad was unable to wean yesterday because "the floor was too busy." Mom sweetly but firmly let them know that this was unacceptable. She persisted today until they started to wean him. Last I heard, he was going strong.
Tuesday, April 15, 2014
To save you the trouble of googling...
IgG antibodies are extracted from donated blood plasma and used as a therapeutic known as intravenous immunoglobulin (IVIG). This is used to treat immune deficiencies, autoimmune disorders and infections.
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months.
Add "Steve Parsley" to the list as yet another good reason to give blood! ;)
(P.S. Another way to read the line "extracted from the plasma of over one thousand blood donors" is "VERY EXPENSIVE")
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG antibodies extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months.
Add "Steve Parsley" to the list as yet another good reason to give blood! ;)
(P.S. Another way to read the line "extracted from the plasma of over one thousand blood donors" is "VERY EXPENSIVE")
A 4 :) post!
WBC today= 10.6! The cultures that they drew recently are all negative so far. No fever. :)
He weaned for 14 hours yesterday!! With a move in the middle of all of that! What a Rockstar!! :)
Because they have seen recent small improvements, they have decided to do another 5 doses of IVIG! First dose was given last night. ;)
One of our international readers identified herself ...my friend, Amy Yoder, who lives in Indonesia with her family, is following Dad's journey. Thanks for praying, Amy! We'd love to "meet" the rest of our international readers. Please feel free to leave your name in the comment section. All this support gives us strength. ;)
He weaned for 14 hours yesterday!! With a move in the middle of all of that! What a Rockstar!! :)
Because they have seen recent small improvements, they have decided to do another 5 doses of IVIG! First dose was given last night. ;)
One of our international readers identified herself ...my friend, Amy Yoder, who lives in Indonesia with her family, is following Dad's journey. Thanks for praying, Amy! We'd love to "meet" the rest of our international readers. Please feel free to leave your name in the comment section. All this support gives us strength. ;)
Monday, April 14, 2014
April 14- moved to room 7077
Dad has been moved to room 7077 in MICU. The M is for Medical. Previously, he was in SICU- S for Surgical (following his bleeding trach surgery). They needed the SICU bed and he is currently a patient only in need of medical management. Dad was worried about the move, as past moves have been rather "eventful," but Becky said it happened smoothly.
WBC today = 12.8. X-Ray showed no significant changes but also no fluid in lungs. They drew blood and urine samples to check on any new infections.
Yesterday Dad asked (via jaw movements and alphabet translation) "What's next on the agenda?" He also asked how he was going to be able to talk with the trach in. "His nurse was able to give him a good explanation of how getting off the ventilator and developing stronger diaphragm muscles will enable him to move air past the trach across the vocal cords" per Mom.
Dad was unable to wean yesterday but started bright and early this morning at 8 o'clock and is still going strong...8 1/2 hours at time of posting!
A big welcome to our new friends who are viewing this blog in Indonesia, Germany, Netherlands, Poland, and Turkey! Dave and Margo Hoffman, are these friends of yours? If so, any friend of Dave and Margo's is a friend of ours. Or maybe you are a friend from Dad's Litton days?! Thanks for following along.
Sunday, April 13, 2014
Undeserved Blessings
This post was sent to me from Mom (Nancy Mom. I know I've referred to both my moms lately. Sorry about the confusion.) This is from Nancy...
Isaiah 65:24 Before they call I will answer! While they are still speaking I will hear."
This verse describes exactly what has been happening since this whole ordeal began a little over a month ago. God has met our many needs through many of you reading this blog.
If I attempted to mention everyone, I absolutely would leave someone out. Starting with the move from our house to the condo on March 10, we couldn't have predicted that we would not be part of it at all and that He would prompt so many friends to just show up and fill in around Tim and the u-haul guys.
Another time I realized that Charlie would need to be boarded as I was just not home enough, but the kennel said he couldn't come without proof of a recent kennel cough vaccination, which takes 7 days to kick in. Within a few minutes I received a call from a longtime work friend of Steve whom I hadn't talked with in at least a year. "What can I do?" Dave Meyerrose said. He took Charlie to the vet and then out to play.
We had two storage sheds, one of which needed emptying right away. Dave Giegler organized two shed crews over two nights and I still don't know what is in the one shed we still have.....but it is in there thanks to several of you. Dave told me not to go over there alone as nothing can come out without an avalanche! Thank you, as I didn't really know what I was asking!
I don't ever know ahead of time when I'll reach the end of my reserves before the day is out. Three times this week God sent rescue and rejuvenation in the form of evening visits with Steve and lunch out for me. Thank you, Rich, Dave Gilbert, and Sue Giegler:)
On Monday, just after I hit rock bottom and told the Pallative Care RN, "I really need to find someone who has been down this road before! And soon!" Flora sent me a text saying "Check your inbox for an email from Sue Pinney. Her husband had GBS in 2008 and she wants to talk to you."
And a final story about God answering prayer before it is voiced. A lady named Natalee, friend of Flora's sister, read the blog and wanted to help in some way. She read that Charlie was once again needing a place to stay for a while. This mother of 8 reached out to Becky who had been keeping Charlie and offered to keep him at no charge at her daughter's boarding kennel on their property. She sent a video of him cavorting with her children. I haven't met you, Natalee, but Steve and I are so very grateful. I promise to come and get him:). (Flora here - Actually, Mom, Natalee offered before she knew there was a need. She just felt prompted and thought she'd "throw it out there." It just so happens that there WAS a need. A complete stranger to you was used to bless you. Look in the comments section of the "In a Nutshell" post on April 9) :)
Yes, of course I wonder "why" this has happened, and yet I see evidence all around that He knows, hears, and loves us. He shows us this through the prayers, calls, cards, hospital visits, dog care, bush removal, moving help, dryer fixing, grocery shopping, car to dealer for fixing and return to our driveway, meals, flower planting, beds to crawl into, gift cards.....that you all have provided.
Flora talking now:
So Mom (Parsley) just sent me this blog to post...while I was writing an almost identically-themed one in my head based on the same verse!
Tim and I have just started having the "long term illness is expensive/missed shifts/gas money/Easter is coming" conversation this week. Honestly, we haven't prayed about it but should. This morning after church, a friend who has been following the blog, walked up to Tim and handed him a wad of cash. Tim started to protest. Our friend said, "I feel like I should give this to you. We feel prompted to give this to you guys. Maybe it could cover some of the gas costs? We feel for you. You have to take this. If you don't take it you are stealing from me my ability to respond to God's prompting."
Before we even asked.
Isaiah 65:24 Before they call I will answer! While they are still speaking I will hear."
This verse describes exactly what has been happening since this whole ordeal began a little over a month ago. God has met our many needs through many of you reading this blog.
If I attempted to mention everyone, I absolutely would leave someone out. Starting with the move from our house to the condo on March 10, we couldn't have predicted that we would not be part of it at all and that He would prompt so many friends to just show up and fill in around Tim and the u-haul guys.
Another time I realized that Charlie would need to be boarded as I was just not home enough, but the kennel said he couldn't come without proof of a recent kennel cough vaccination, which takes 7 days to kick in. Within a few minutes I received a call from a longtime work friend of Steve whom I hadn't talked with in at least a year. "What can I do?" Dave Meyerrose said. He took Charlie to the vet and then out to play.
We had two storage sheds, one of which needed emptying right away. Dave Giegler organized two shed crews over two nights and I still don't know what is in the one shed we still have.....but it is in there thanks to several of you. Dave told me not to go over there alone as nothing can come out without an avalanche! Thank you, as I didn't really know what I was asking!
I don't ever know ahead of time when I'll reach the end of my reserves before the day is out. Three times this week God sent rescue and rejuvenation in the form of evening visits with Steve and lunch out for me. Thank you, Rich, Dave Gilbert, and Sue Giegler:)
On Monday, just after I hit rock bottom and told the Pallative Care RN, "I really need to find someone who has been down this road before! And soon!" Flora sent me a text saying "Check your inbox for an email from Sue Pinney. Her husband had GBS in 2008 and she wants to talk to you."
And a final story about God answering prayer before it is voiced. A lady named Natalee, friend of Flora's sister, read the blog and wanted to help in some way. She read that Charlie was once again needing a place to stay for a while. This mother of 8 reached out to Becky who had been keeping Charlie and offered to keep him at no charge at her daughter's boarding kennel on their property. She sent a video of him cavorting with her children. I haven't met you, Natalee, but Steve and I are so very grateful. I promise to come and get him:). (Flora here - Actually, Mom, Natalee offered before she knew there was a need. She just felt prompted and thought she'd "throw it out there." It just so happens that there WAS a need. A complete stranger to you was used to bless you. Look in the comments section of the "In a Nutshell" post on April 9) :)
Yes, of course I wonder "why" this has happened, and yet I see evidence all around that He knows, hears, and loves us. He shows us this through the prayers, calls, cards, hospital visits, dog care, bush removal, moving help, dryer fixing, grocery shopping, car to dealer for fixing and return to our driveway, meals, flower planting, beds to crawl into, gift cards.....that you all have provided.
Flora talking now:
So Mom (Parsley) just sent me this blog to post...while I was writing an almost identically-themed one in my head based on the same verse!
Tim and I have just started having the "long term illness is expensive/missed shifts/gas money/Easter is coming" conversation this week. Honestly, we haven't prayed about it but should. This morning after church, a friend who has been following the blog, walked up to Tim and handed him a wad of cash. Tim started to protest. Our friend said, "I feel like I should give this to you. We feel prompted to give this to you guys. Maybe it could cover some of the gas costs? We feel for you. You have to take this. If you don't take it you are stealing from me my ability to respond to God's prompting."
Before we even asked.
Girl, you are getting on my last nerve!
Tim says I need to explain what happened with nurse Ruthie. I wish I could act it out for you, it is so much funnier. Basically, we irritated her by showing up in the middle of the night. (We drove down urgently from Ft. Wayne and told Nancy we would take the night shift. It had been a long ugly procedure-filled day) In all fairness, we did disregard the "only one person in the room overnight" rule- we tried to follow it (Tim slept in waiting room for part of the night) but it really took both of us to decipher his needs. It didn't help that we also caught many mistakes (a drainage tube completely smashed under the wheel of his bed, his boot not repositioned once in 8 hours, his feeding tube turned off and not restarted until we pointed it out, she tried to give him pain medicine after 1 hour and 15 minutes when the order was for every 4 hours, and she completely disregarded his ability to communicate and would just reposition him and walk away - never asking "Does that feel ok?" "Are you comfortable?" - usually he wasn't and we had to finish the job. Dad had a lot of things that he needed that night and we had to do a lot of spelling and then alerting the nurses (He repeatedly asked to be suctioned). We were nuisances, but we tried to be sweet about it. We asked politely and tried to acknowledge that we were being the "needy room."
Then at 5am, Tim peeked his head out, looked toward the nurses station, and then turned around and told me, "Flora, there is something happening out there! There are a bunch of cops!" Tim then caught the eye of one of them and asked him, "Should I stay in here? Is it safe to come out?" They said, "Actually, Sir, if you could step out here." Ha! We had no idea they were there for US!! That part of the story is never gonna get old!
Five cops were there to escort us off the unit. (It had been a slow night but something started happening while they were talking to us and quite a few of them took off) Earlier, because it was after hours when we arrived at the hospital, we had had to go through the metal detector. The cop scanning my belongings asked me, "Ma'am, do you have scissors in your purse?" I said, "Yes, I do. You never know when your eyebrows might get a little crazy!" He had smiled and let me keep them but when he saw that it was me that they were called to remove, I'm sure he was thinking, "Watch her! She is armed!"
So there we were, completely surprised that we were about to be forcibly removed from the unit by all these armed cops "so that the nurse could do her job." I start getting fired up because I'm thinking "Are you kidding me? WE were the ones actually providing nursing care tonight!" I started getting all wild-eyed and crazy looking. Tim kept putting his hand on my shoulder saying, "I've got this, Flora." He was trying to project the fact that we were sane rational people and I was definitely not helping his case. I told the cop, "We would be happy to go and get some sleep if you are willing to go stand at his bedside and slowly walk through the alphabet A-B-C-D until you get a word, then a phrase, and then let the nurse know what it is he needs."
Eventually, we talked to the resident in charge that night and he very quickly realized that we had legitimate concerns. We never saw hide nor hair of Ruthie again, and we were NOT asked to leave the unit. We also spoke in detail with the nurse manager the next day and she apologized profusely. They did everything to make it right and we were very pleased with the outcome. We told them, "We want to be son and daughter-in-law, not bulldog and nurse." We love the times when we can sit back and marvel at the caring people who are doing their best to meet his needs. We will forever be singing the praises of the nurses who do their jobs with excellence - and there are sooo many! In fact, I have a "Caregram" ready to send in for his nurse, Brittany, and his RT, Brandy, from his time at St E. They were amazing and deserve to be recognized.
So you've heard the story once but ask me about it in person. It is too fun to act out Tim's response!
Then at 5am, Tim peeked his head out, looked toward the nurses station, and then turned around and told me, "Flora, there is something happening out there! There are a bunch of cops!" Tim then caught the eye of one of them and asked him, "Should I stay in here? Is it safe to come out?" They said, "Actually, Sir, if you could step out here." Ha! We had no idea they were there for US!! That part of the story is never gonna get old!
Five cops were there to escort us off the unit. (It had been a slow night but something started happening while they were talking to us and quite a few of them took off) Earlier, because it was after hours when we arrived at the hospital, we had had to go through the metal detector. The cop scanning my belongings asked me, "Ma'am, do you have scissors in your purse?" I said, "Yes, I do. You never know when your eyebrows might get a little crazy!" He had smiled and let me keep them but when he saw that it was me that they were called to remove, I'm sure he was thinking, "Watch her! She is armed!"
So there we were, completely surprised that we were about to be forcibly removed from the unit by all these armed cops "so that the nurse could do her job." I start getting fired up because I'm thinking "Are you kidding me? WE were the ones actually providing nursing care tonight!" I started getting all wild-eyed and crazy looking. Tim kept putting his hand on my shoulder saying, "I've got this, Flora." He was trying to project the fact that we were sane rational people and I was definitely not helping his case. I told the cop, "We would be happy to go and get some sleep if you are willing to go stand at his bedside and slowly walk through the alphabet A-B-C-D until you get a word, then a phrase, and then let the nurse know what it is he needs."
Eventually, we talked to the resident in charge that night and he very quickly realized that we had legitimate concerns. We never saw hide nor hair of Ruthie again, and we were NOT asked to leave the unit. We also spoke in detail with the nurse manager the next day and she apologized profusely. They did everything to make it right and we were very pleased with the outcome. We told them, "We want to be son and daughter-in-law, not bulldog and nurse." We love the times when we can sit back and marvel at the caring people who are doing their best to meet his needs. We will forever be singing the praises of the nurses who do their jobs with excellence - and there are sooo many! In fact, I have a "Caregram" ready to send in for his nurse, Brittany, and his RT, Brandy, from his time at St E. They were amazing and deserve to be recognized.
So you've heard the story once but ask me about it in person. It is too fun to act out Tim's response!
Potpourri
One of Dad's frequent requests is to have water dripped on his face. Something about that sensation feels good to him. (We may get him recruited to the FBI following this since he obviously is immune to water torture. Our national secrets would be safe with him.)
Dad has splints for his hands and a boot for his foot that we alternate every 3-4 hours to help prevent foot drop. We want to preserve as much function as possible so that he is ready to roll once those nerves reconnect.
One day when Rich Frazier stopped by to visit with Dad and read some encouraging words to him, we got to thinking, "What is Dad really thinking about in there?" We asked him if he was planning his next train layout and he said, "Yes." ;)
Dad has full sensation in his arms and legs. One day I watched them assess this - the nurse touched his right arm and said "Steve, am I touching your leg?" "No" (motioned with his jaw) "Am I touching your left arm?" "No" "Am I touching your right arm?" "Yes" He was able to answer all of their questions correctly, even when they tried to trick him and touch 2 places at once.
Since finding out that nerves regrow at a rate of only 1 mm per day, I can't help thinking when I see a tall person, "Oh goodness, I hope he never gets Guillain-Barre!" I playfully said that to one of the neuro residents at UC who was over 6 ft 5 in. I said, "You've got a lot of nerve!" He said, "That's what my momma always tells me!"
Dad has splints for his hands and a boot for his foot that we alternate every 3-4 hours to help prevent foot drop. We want to preserve as much function as possible so that he is ready to roll once those nerves reconnect.
One day when Rich Frazier stopped by to visit with Dad and read some encouraging words to him, we got to thinking, "What is Dad really thinking about in there?" We asked him if he was planning his next train layout and he said, "Yes." ;)
Dad has full sensation in his arms and legs. One day I watched them assess this - the nurse touched his right arm and said "Steve, am I touching your leg?" "No" (motioned with his jaw) "Am I touching your left arm?" "No" "Am I touching your right arm?" "Yes" He was able to answer all of their questions correctly, even when they tried to trick him and touch 2 places at once.
Since finding out that nerves regrow at a rate of only 1 mm per day, I can't help thinking when I see a tall person, "Oh goodness, I hope he never gets Guillain-Barre!" I playfully said that to one of the neuro residents at UC who was over 6 ft 5 in. I said, "You've got a lot of nerve!" He said, "That's what my momma always tells me!"
Saturday, April 12, 2014
April12th - Update by Becky
Infectious Disease doctor (Dr. Goodman) was in today and said everything is looking good and we'll keep doing what we're doing. He again reassured me that he sees "about 1-2 GBS patients a year and they recover. It's a weird and crazy illness, and it will take some time to recover."
Dr. Rorick (neurologist) came in earlier today. Said jaw "no" combined with head back and forth is good. Shows "affirmative no" :) Dad moved his head side to side for him, moved his tongue a tiny bit, and tried to move his eyeballs.
While Mom and I were at dinner, Ali (night nurse) spelled with Dad. He told her he was "hungry" and when she asked what his favorite food was, he said "PB" (peanut butter) Just PB? "and jelly" ;)
Dad got a bath tonight (tolerated fine) and a new bed. It's called an ICU BED. The night nurse, Ali, whom Mom, Dad, and I really like, said she thinks it's called a total care sport bed. It is filled with air, aiding nurses to turn him as it redistributes the weight automatically. Dad said both processes were fine.
He weaned for 11 hours today with no complications, and was switched back to vent before he was too fatigued. Dad is currently getting the A-Line site cleaned and redressed. Tried putting a splint on it to get it to behave (it's been reading funny due to position of hand - that happens over time.)
I'm spending the night again tonight. We're currently "watching" National Geographic deep sea fishing together :) -Becky
Dr. Rorick (neurologist) came in earlier today. Said jaw "no" combined with head back and forth is good. Shows "affirmative no" :) Dad moved his head side to side for him, moved his tongue a tiny bit, and tried to move his eyeballs.
While Mom and I were at dinner, Ali (night nurse) spelled with Dad. He told her he was "hungry" and when she asked what his favorite food was, he said "PB" (peanut butter) Just PB? "and jelly" ;)
Dad got a bath tonight (tolerated fine) and a new bed. It's called an ICU BED. The night nurse, Ali, whom Mom, Dad, and I really like, said she thinks it's called a total care sport bed. It is filled with air, aiding nurses to turn him as it redistributes the weight automatically. Dad said both processes were fine.
He weaned for 11 hours today with no complications, and was switched back to vent before he was too fatigued. Dad is currently getting the A-Line site cleaned and redressed. Tried putting a splint on it to get it to behave (it's been reading funny due to position of hand - that happens over time.)
I'm spending the night again tonight. We're currently "watching" National Geographic deep sea fishing together :) -Becky
Dog on the Blog
Submitted by Nancy and Becky on behalf of Charlie (King Charles Cavalier) -
This is Charlie. I'm Steve and Nancy's beloved dog. I've been asked to write on something called a blog. It's been a strange month since my life turned upside down. My Steve went away, and I'm not sure where he went. Maybe he's buying me some more treats. But it sure is taking awhile...maybe traffic is bad.
Anyway, it all started when we decided to move into a new home. It seems like a nice place. However, I got paint on my butt when they were painting the walls. Oh well. So, as I was saying, my Steve went away, and then these strange people with a big van came and started taking all of our furniture! I was howling trying to tell them to stop, but they kept saying, "it's ok" and "you're ok"...but it wasnt! Next thing I know, I was at the new house. At least all my stuff was in a box....somewhere.
The next day, a nice lady named Pat Russ invited me over to play for a few days! It was great! I got to go to work, participate in a book club...but I got lonely and worried. I howled and howled! So, then my Nancy's friends Linda and Dave Gilbert invited me to come to their house. I made a new friend there named Tink. Tink and I had a great time together, but I was really beginning to wonder what was taking my Steve so long to get home with those treats! So, a few days of hard play, and then I was worrying and howling AGAIN.
My Nancy brought me back home, where I hung out during the day by myself until someone could let me out to potty. And maybe play laser light. The Gieglers and the neighbors, Kurt and Darla, we're available to let me out JUST as I was beginning to wish I could use a people toilet. Thankfully, I didn't have to attempt that feat. Nancy found a lady named Shelly who knew of a girl who could come by to give me a walk each day, but what I needed was a bit more than a walk.
At this time, Nancy decided to take me to my "home away from home"- New Beginnings. My Karen there loves me! I was so excited! I had a great time. A few days later, Becky picked me up and took me to live with her for a while. I was really good for her. She has two kids and a huge yard! They also have a cat and two hamsters...and that was interesting. I don't know why they wouldn't let me play with the hamsters though. And there's only so many soccer practices I'm willing to sit through. Even though I was being really good, and I didn't howl, they are very busy, and realized they were going to be gone MOST of the weekend (this weekend in which I am writing). So I had to come to Cincinnati with Becky. I was hoping Steve was home with my treats.
Instead, we pulled into the driveway of someone's house that I did not know. I found out that a woman named Natalee and her 8 children were hoping to have a houseguest. Little did I know, I WAS THAT HOUSEGUEST. They have pet boarding business! Imagine my excitement at this new adventure! They heard about me on something called a "blog". I guess it's how humans communicate. I must be getting famous! The kids came running out to greet me! One of the girls, named Mia, is "in charge" of me for a while. She has promised walks, love and treats. AND GUESS WHAT!? She loves playing with me and the laser light!! SCORE!! I think I'm gonna like it here....but I still miss my Steve. So, this has been a crazy month full of loving humans. But right now, I must remember...NO HOWLING.
Drumroll please!!!
Dad's WBC count is normal for the first time since March 27th!!! 10.2!! Whoop whoop!!
Becky spent the night and gave Dad lots of shoulder rubs and hand rubs. She said he "had a good vest treatment, moved his head side to side more, and moved his eyelids but did not open them."
Before going to sleep, Becky held the phone to his ear so that Mom could say goodnight to him. "He was moving his chin up and down the whole time. He said he slept a little better last night and his vitals were solid."
On a personal note: Thank you to my mom for being my grammar and punctuation editor. (A role I asked her to fill) We all have our roles, and one of her many is to keep me from looking like an idiot. I blabber on without regard for grammatical rules and she slips in and adds commas and brackets and hyphens as appropriate. I love waking up and reading yesterday's post and seeing that she has been there cleaning me up. Thanks, Mom!
Becky spent the night and gave Dad lots of shoulder rubs and hand rubs. She said he "had a good vest treatment, moved his head side to side more, and moved his eyelids but did not open them."
Before going to sleep, Becky held the phone to his ear so that Mom could say goodnight to him. "He was moving his chin up and down the whole time. He said he slept a little better last night and his vitals were solid."
On a personal note: Thank you to my mom for being my grammar and punctuation editor. (A role I asked her to fill) We all have our roles, and one of her many is to keep me from looking like an idiot. I blabber on without regard for grammatical rules and she slips in and adds commas and brackets and hyphens as appropriate. I love waking up and reading yesterday's post and seeing that she has been there cleaning me up. Thanks, Mom!
Friday, April 11, 2014
April 11
A big welcome to Susan and Bob Pinney! Bob had GBS in 2008 and his daughter, Stacey (also a nurse!) kept a daily care page for him. I'm smack in the middle of reading through his journey right now. The similarities are plenty - Bob also was "one of the worst cases" and had plenty of awful complications. Since his recovery, Bob walks with a cane and has been on 3 cruises and multiple plane trips. Susan was able to visit with Nancy by email and phone today. Mom said, "She was already helpful!" (Plus, they have a 2-year-old granddaughter and an Aidan for a grandson. Oh, and they have family in Lebanon, OH) We are so so pleased to make their acquaintance. I told Susan "This isn't exactly a club you want to belong to, but when you are in it, it is nice to have people to stand shoulder-to-shoulder with."
Today's updates:
Dad had another bronch today. The nurse told me, "They wanted to do it so that he would have a comfortable weekend."
Dad remains on Heparin as they are waiting for the Coumadin to get to therapeutic levels.
He is tolerating the increase in his tube feedings and remains at the goal rate of 85ml/hr.
The vent popped off a few times during his chest vest percussion. My sister Kristy said, "Where is the duct tape?!?" Duct tape fixed most things in Dad's pre-GBS world.
Becky is back in town and staying bedside tonight. My phone is blowing up with updates even as I type this... She reports, "Dad opened his right eye enough that I could see his iris tonight. This is new! He also moved his head side to side several times about a fraction of an inch. The nurse tonight said that one nurse yesterday saw a definitive nod!"
Dad said to Becky, "Should we move to condo" She is "Not sure if that means he couldn't remember the whole moving process or that his things were already there? Or was he ready to move this party elsewhere? Never got a clear answer." (Face it? Or Face itch?)
An Easy Gig
I asked my mom to talk a little about her time sitting with Tim's dad today...
This is Karen - Flora's mom.
Lee and I just spent some time with Steve at The Christ Hospital. It felt good to give Nancy a little break and she was so appreciative.
David Monroe from Lakeside was also there so that made visiting much easier. Nancy said Steve likes to listen in on other people's conversations so that's what we did - we stood by his bed sharing stories and tried to include Steve.
After a while, he indicated he had pain so we called the nurse - he also spelled out NECK so she administered pain medication and repositioned him. After that, he seemed to be more comfortable.
I asked him, "Would you like us to just be quiet now?" He indicated "Yes" and we cracked up. He went to sleep and we sat playing quietly with our iPads until Becky showed up.
Thank you, Kristy, for getting the "Lotsa Helping Hands" calendar up and working. I downloaded the app to my phone and that is going to make the scheduling easy.
Tim talking now:
If you are willing and able to help, you can sign up for a time slot to sit with Dad. Just go to the link below. You'll need to join under the "Join this Community" link on the left, then you can access the calendar and see what times we could use someone to sit and keep dad company. (Once there, click on the "Month" view to see the specific times.) Thanks so much and let us know if you have any questions.
Here is the link:
Steve and Nancy's Helping Hands Sign-up Calendar
This is Karen - Flora's mom.
Lee and I just spent some time with Steve at The Christ Hospital. It felt good to give Nancy a little break and she was so appreciative.
David Monroe from Lakeside was also there so that made visiting much easier. Nancy said Steve likes to listen in on other people's conversations so that's what we did - we stood by his bed sharing stories and tried to include Steve.
After a while, he indicated he had pain so we called the nurse - he also spelled out NECK so she administered pain medication and repositioned him. After that, he seemed to be more comfortable.
I asked him, "Would you like us to just be quiet now?" He indicated "Yes" and we cracked up. He went to sleep and we sat playing quietly with our iPads until Becky showed up.
Thank you, Kristy, for getting the "Lotsa Helping Hands" calendar up and working. I downloaded the app to my phone and that is going to make the scheduling easy.
Tim talking now:
If you are willing and able to help, you can sign up for a time slot to sit with Dad. Just go to the link below. You'll need to join under the "Join this Community" link on the left, then you can access the calendar and see what times we could use someone to sit and keep dad company. (Once there, click on the "Month" view to see the specific times.) Thanks so much and let us know if you have any questions.
Here is the link:
Steve and Nancy's Helping Hands Sign-up Calendar
Thursday, April 10, 2014
Beginning to hate the phrase "2 steps forward, 1 step back"
Dad has been having lots of pain the last 24 hours. They've bumped up his pain medicine. We have yet to hear a clear answer whether or not more pain is a good thing ... does it mean his nerves are beginning to reconnect?
Only 2 hours of wean yesterday due to exhaustion.
While being turned for a skin assessment today, Dad had another episode of bradycardia - hisheart rate dropped to the 20s. They had to give him atropine. They performed another bronch and found more secretions and plugs. Third bronch in 6 days. :/
Only 2 hours of wean yesterday due to exhaustion.
While being turned for a skin assessment today, Dad had another episode of bradycardia - hisheart rate dropped to the 20s. They had to give him atropine. They performed another bronch and found more secretions and plugs. Third bronch in 6 days. :/
Wednesday, April 9, 2014
In a nutshell...
Since many of our friends are just now hearing about this blog, I thought a recap might be helpful. - Flora (Steve's daughter-in-law)
One month ago today, Dad thought he was having a stroke. Instead, it turned out to be a rare auto-immune disorder called Guillain-Barre Syndrome that attacks the peripheral nervous system. He quickly became paralyzed and lost all of his reflexes - including his ability to cough, gag and protect his airway, so he was put on a ventilator. He can feel but not move. He has complete mental function but he cannot communicate except through jaw motions - up and down=yes, side to side=no.
He started his journey at St E South, was moved to Neuro ICU at UC for a few weeks, spent 24 hours at Drake rehab (at Christ hospital), had emergency surgery at Christ Hospital for a bleeding trach and is currently in SICU at Christ awaiting transfer back to the Drake unit. 4 different hospitals (8 different units) in 30 days!
He has received 4 doses of IVIG and 5 plasmapheresis treatments. He has had a trach, a PICC line, and a feeding tube placed. He has had pneumonia, a UTI and a blood clot. He has had multiple X-rays, CT scans, and bronchoscopies. He has had EKGs, EMGs, and surgeries. Whew!
Along the way we have met hundreds of health care professionals and hospital personnel. We have seen all the -ologists (hemat, neur, cardi, onc, pulm, radi, etc) Overall, we have been very impressed and totally appreciative of their expertise. (Except for that ridiculous ICU nurse who tried to flex her muscles - she called security and 5 cops [yes, 5!] showed up to throw me and Tim out of ICU - but ended up punching her own self in the face!! ;) How'd that work out for you, Ruthie?! You got busted and I have a blog. ;p)
He has been to the brink and is starting the long journey back. Doctors say that the nerve damage is extensive and could take close to a year to recover but they do believe he will recover. He has already started weaning from the ventilator. The plan is to just support him for as long as it takes for his nerves to regrow (at the rate of a millimeter a day). We are praying for complete restoration.
The learning curve has been steep but we are each gaining new skills and finding new sources of strength every day. Dad has been a trooper and continues to amaze us with his fortitude.
There. That's the cliff notes. You are now up to speed... (Are you exhausted now too?)
One month ago today, Dad thought he was having a stroke. Instead, it turned out to be a rare auto-immune disorder called Guillain-Barre Syndrome that attacks the peripheral nervous system. He quickly became paralyzed and lost all of his reflexes - including his ability to cough, gag and protect his airway, so he was put on a ventilator. He can feel but not move. He has complete mental function but he cannot communicate except through jaw motions - up and down=yes, side to side=no.
He started his journey at St E South, was moved to Neuro ICU at UC for a few weeks, spent 24 hours at Drake rehab (at Christ hospital), had emergency surgery at Christ Hospital for a bleeding trach and is currently in SICU at Christ awaiting transfer back to the Drake unit. 4 different hospitals (8 different units) in 30 days!
He has received 4 doses of IVIG and 5 plasmapheresis treatments. He has had a trach, a PICC line, and a feeding tube placed. He has had pneumonia, a UTI and a blood clot. He has had multiple X-rays, CT scans, and bronchoscopies. He has had EKGs, EMGs, and surgeries. Whew!
Along the way we have met hundreds of health care professionals and hospital personnel. We have seen all the -ologists (hemat, neur, cardi, onc, pulm, radi, etc) Overall, we have been very impressed and totally appreciative of their expertise. (Except for that ridiculous ICU nurse who tried to flex her muscles - she called security and 5 cops [yes, 5!] showed up to throw me and Tim out of ICU - but ended up punching her own self in the face!! ;) How'd that work out for you, Ruthie?! You got busted and I have a blog. ;p)
He has been to the brink and is starting the long journey back. Doctors say that the nerve damage is extensive and could take close to a year to recover but they do believe he will recover. He has already started weaning from the ventilator. The plan is to just support him for as long as it takes for his nerves to regrow (at the rate of a millimeter a day). We are praying for complete restoration.
The learning curve has been steep but we are each gaining new skills and finding new sources of strength every day. Dad has been a trooper and continues to amaze us with his fortitude.
There. That's the cliff notes. You are now up to speed... (Are you exhausted now too?)
More good things!
WBC today=11! (Nearly in normal range)
Also, the culture from the PICC line that they removed a few days ago came back positive for infection. Yeah!! Answers about where the recent WBC spike was coming from.
Yesterday he was weaned from the ventilator for 10 hours!! He had handled it so well in the morning that after returning from lunch I asked the RT "So, how long was his wean?" She said, "He is still going!" We couldn't tell. His vitals were, you guessed it, rock solid! ;)
Weaning has been started for today with the goal of 10-12 hours.
The CART study was done and proves that he needs more calories - 500 more a day! (I can't help myself, I know it's not pretty to gloat but I totally called that one. I told them that he has lost 30 lbs since the beginning of this. They tried to tell me it was fluid loss. I had his admission weight from St E's - his true baseline!) They just now bumped up his tube feeding. Yeah!!!!
Flying high and totally caffeinated...I've posted a bunch today. Don't stop reading here...keep going until you've read the Rock Solid post. ;)
Also, the culture from the PICC line that they removed a few days ago came back positive for infection. Yeah!! Answers about where the recent WBC spike was coming from.
Yesterday he was weaned from the ventilator for 10 hours!! He had handled it so well in the morning that after returning from lunch I asked the RT "So, how long was his wean?" She said, "He is still going!" We couldn't tell. His vitals were, you guessed it, rock solid! ;)
Weaning has been started for today with the goal of 10-12 hours.
The CART study was done and proves that he needs more calories - 500 more a day! (I can't help myself, I know it's not pretty to gloat but I totally called that one. I told them that he has lost 30 lbs since the beginning of this. They tried to tell me it was fluid loss. I had his admission weight from St E's - his true baseline!) They just now bumped up his tube feeding. Yeah!!!!
Flying high and totally caffeinated...I've posted a bunch today. Don't stop reading here...keep going until you've read the Rock Solid post. ;)
Man of few words
Here is a link to a video so that you can see how he communicates. Poor guy, I was fiddling with this video about communication and almost missed the fact that he was signaling that he wanted to talk. He wants to be repositioned. I've alerted the nurses. Oops.
https://www.facebook.com/photo.php?v=10203566050257189
https://www.facebook.com/photo.php?v=10203566050257189
Mixed messages
Mom and I were discussing the last post - all about his emotions (Rock Solid). Then Dad motioned that he wanted to spell. Mom got her pad of paper and translated "Face it." We were remarking on the fact that we wished there was tone - did he mean "Face the situation?" (Soft tone?) (Matter of fact tone?) (Stern tone?) (Together?) "HE was facing the situation?"...we were puzzled but determined to face it.
Then he wanted to spell some more..."S-C-R-A-T-C-H-F-A-C-E"
Lol! His face itched! We are cracking up! They don't teach this method of communication in pre-marriage counseling.
(I read that to Dad and he is "laughing" with his mouth)
Then he wanted to spell some more..."S-C-R-A-T-C-H-F-A-C-E"
Lol! His face itched! We are cracking up! They don't teach this method of communication in pre-marriage counseling.
(I read that to Dad and he is "laughing" with his mouth)
Rock Solid
I told mom yesterday "His vital signs were rock solid in the night." She said "I like that description...so much better than stable"
Later that afternoon, we were happy to use those words to describe, of all things, his emotional state....
Mom arranged to have the palliative care RN and chaplain meet privately with Dad to see what he might be feeling. We taught them how to communicate with him and then we stepped out into the lobby to give him privacy to share. Honestly, Mom and I were so afraid to hear the results and Mom even said "I'm not even going to ask about the conversation because that should be confidential" BUT the RN and Chaplain came out to find us and they couldn't wait to tell us "He is good!!"
They asked him:
Are you sad? No
Worried? Yes
Worried about getting better? No
Worried about how long to get better? Yes
Worried about Nancy? Yes
Worried about condo? No
Worried about grand kids? No
Are you angry? No
Hopeful? Yes
Believe you will be healed? Yes
Believe in God? Yes
Believe in prayer? Yes
Are you getting your questions answered? Yes
Confused? No
Getting good care from RNs? Yes
Anything they can do to improve? No
Comfortable? Yes
Ready to go to rehab? Yes
You might be moving to LTAC soon, can the chaplain keep seeing you in LTAC? Yes
PT/OT have been here? Yes
What are you most afraid of? "S-E-Q-U-E-N-C-E"
Of events? Yes
Are you worried about how long for each part of the sequence? No
Are you as amazed at his depth of strength as we are?! We were completely stunned. It shouldn't be surprising, because it is consistent with his life and faith prior to this craziness, but we couldn't help but be fearful that he was cracking under the strain. Not at all. Rock solid.
And "sequence" of course he is!! He is a systems engineer. ;)
I drove to Cincinnati Monday night with my heart full of fear and grief and I'm leaving today full of hope and amazement. He is clinging to his faith and his faith is proving strong.
"The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold" Psalm 18:2
(I just read this entire post to Dad before publishing-to get his approval. I wanted to make sure that I wasn't overstepping his privacy or putting words in his mouth. He gave me lots of approval with his jaw movements. Through tears, I told him how proud and amazed we all are.)
Later that afternoon, we were happy to use those words to describe, of all things, his emotional state....
Mom arranged to have the palliative care RN and chaplain meet privately with Dad to see what he might be feeling. We taught them how to communicate with him and then we stepped out into the lobby to give him privacy to share. Honestly, Mom and I were so afraid to hear the results and Mom even said "I'm not even going to ask about the conversation because that should be confidential" BUT the RN and Chaplain came out to find us and they couldn't wait to tell us "He is good!!"
They asked him:
Are you sad? No
Worried? Yes
Worried about getting better? No
Worried about how long to get better? Yes
Worried about Nancy? Yes
Worried about condo? No
Worried about grand kids? No
Are you angry? No
Hopeful? Yes
Believe you will be healed? Yes
Believe in God? Yes
Believe in prayer? Yes
Are you getting your questions answered? Yes
Confused? No
Getting good care from RNs? Yes
Anything they can do to improve? No
Comfortable? Yes
Ready to go to rehab? Yes
You might be moving to LTAC soon, can the chaplain keep seeing you in LTAC? Yes
PT/OT have been here? Yes
What are you most afraid of? "S-E-Q-U-E-N-C-E"
Of events? Yes
Are you worried about how long for each part of the sequence? No
Are you as amazed at his depth of strength as we are?! We were completely stunned. It shouldn't be surprising, because it is consistent with his life and faith prior to this craziness, but we couldn't help but be fearful that he was cracking under the strain. Not at all. Rock solid.
And "sequence" of course he is!! He is a systems engineer. ;)
I drove to Cincinnati Monday night with my heart full of fear and grief and I'm leaving today full of hope and amazement. He is clinging to his faith and his faith is proving strong.
"The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold" Psalm 18:2
(I just read this entire post to Dad before publishing-to get his approval. I wanted to make sure that I wasn't overstepping his privacy or putting words in his mouth. He gave me lots of approval with his jaw movements. Through tears, I told him how proud and amazed we all are.)
Tuesday, April 8, 2014
Welcome Nurses!
A welcome to Dad's nurses that are joining the blog. Your actions are noticed and appreciated! ;) Keep up the good work! (We are somewhere around 200 page views a day currently! Lots of people love you, Steve and Nancy!)
Questions for today:
-Why are his CPK levels elevated? (600+ currently, up from 18 on the 28th) A puzzle to solve.
-How can we stop his weight loss? (30 lbs in the past month)
-Why is his WBC count starting to rise again? (16.6 currently)
-How can we get a volunteer sign-up page posted so that friends can volunteer to sit/read/visit with Dad each day from 4-6 or 7-9 to relieve mom? (My sister, Kristy, is working on this. Stay tuned)
Problem solving has started...looking for answers.
RN just said that he will have a metabolic CART test in the morning - a ventilator test that tells how much energy he is actually using so that they can adjust his caloric intake. Yeah for Dietary following up on our concern and getting this ordered!
Questions for today:
-Why are his CPK levels elevated? (600+ currently, up from 18 on the 28th) A puzzle to solve.
-How can we stop his weight loss? (30 lbs in the past month)
-Why is his WBC count starting to rise again? (16.6 currently)
-How can we get a volunteer sign-up page posted so that friends can volunteer to sit/read/visit with Dad each day from 4-6 or 7-9 to relieve mom? (My sister, Kristy, is working on this. Stay tuned)
Problem solving has started...looking for answers.
RN just said that he will have a metabolic CART test in the morning - a ventilator test that tells how much energy he is actually using so that they can adjust his caloric intake. Yeah for Dietary following up on our concern and getting this ordered!
4am April 8th
It's been a restless night, but only because of the good care he has been receiving, not because of crazy vitals. He just had has daily chest X-ray. Of course I went into the hall when they shot it, but I couldn't help but overhear the technician say, "Father God, please watch over him and keep him safe today" right before she clicked it. I was moved to tears by her prayer over him.
A nurse sitting bedside sees a patient..an artist sees a work of art
When Tim talked to me about his drawing of his dad, he reflected that "it was about getting to know Dad in his new condition. About really seeing him. Spending time through silent, focused meditation."
I hope this link works...
https://www.facebook.com/florasuern/posts/10203552306953615
Or try this one...
https://www.facebook.com/photo.php?v=857146220978883
Someone let me know if it does/doesn't work. I want you to see the video of this 12-year-old boy, Ben Kleindorfer, working on a muscle sensor call light for dad! Boy wonder.
Or try this one...
https://www.facebook.com/photo.php?v=857146220978883
Someone let me know if it does/doesn't work. I want you to see the video of this 12-year-old boy, Ben Kleindorfer, working on a muscle sensor call light for dad! Boy wonder.
April 7th
I won't lie, today has been a pretty rough day for everyone, including dad. This syndrome is ugly. Stupid and ugly and every other adjective I tell my kids not to use. It's hard to believe that one month ago today he and Mom were signing papers to sell their house and buy the condo.
Dad had 6 or so bradycardic events today. His heart rate dropped to the 30's, which prompted his BP to skyrocket to the 200's, and his oxygen level to drop to the 80's. Dad complained of not feeling well today and needed more pain meds. They did a chest X-ray this evening which led them to follow up with a bronchoscopy. His right lung was completely full and it was "spilling over" to the left lung. (Kinda like a double sink) I didn't realize it could even do that. I'm eager to talk to the dr tomorrow and hear about why this keeps happening so abundantly. He is suctioned frequently and he just had a bronch on Friday.
I'm sitting by his bedside right now looking at some beautiful vitals - Heart rate 87, BP 123/61, oxygen 100%. His nurse asked him if he was in pain and he motioned no. He was just given a bath. His nurse is being very attentive to him and conversational with me. I've come to respect a nurse that gives (warm!) blankets to family without being asked. It allows us to save our "asks" for things that he needs. Although, I just heard her ask him if he needed anything else, and he motioned no. She then made extra effort to turn off lights in the room and close the curtain. It's the little things that are really so so big.
Personally, my anxiety level has dropped about 60% just getting down here and seeing him. He gave me lots of jaw movements when I told him I was here and would be staying the night and that I'd been calling to talk to his nurses every shift to check on him. He was very affirmative and then said that he didn't feel the need to spell anything right now. It was relieving to see a clear yes and no.
We are both settled in for what we hope is a peaceful and uneventful night.
Dad had 6 or so bradycardic events today. His heart rate dropped to the 30's, which prompted his BP to skyrocket to the 200's, and his oxygen level to drop to the 80's. Dad complained of not feeling well today and needed more pain meds. They did a chest X-ray this evening which led them to follow up with a bronchoscopy. His right lung was completely full and it was "spilling over" to the left lung. (Kinda like a double sink) I didn't realize it could even do that. I'm eager to talk to the dr tomorrow and hear about why this keeps happening so abundantly. He is suctioned frequently and he just had a bronch on Friday.
I'm sitting by his bedside right now looking at some beautiful vitals - Heart rate 87, BP 123/61, oxygen 100%. His nurse asked him if he was in pain and he motioned no. He was just given a bath. His nurse is being very attentive to him and conversational with me. I've come to respect a nurse that gives (warm!) blankets to family without being asked. It allows us to save our "asks" for things that he needs. Although, I just heard her ask him if he needed anything else, and he motioned no. She then made extra effort to turn off lights in the room and close the curtain. It's the little things that are really so so big.
Personally, my anxiety level has dropped about 60% just getting down here and seeing him. He gave me lots of jaw movements when I told him I was here and would be staying the night and that I'd been calling to talk to his nurses every shift to check on him. He was very affirmative and then said that he didn't feel the need to spell anything right now. It was relieving to see a clear yes and no.
We are both settled in for what we hope is a peaceful and uneventful night.
Sunday, April 6, 2014
Saturday, April 5, 2014
How To Make Comments:
A few of you have said that you would like to post comments on this blog, but are unsure now to do this. Here is how:
1. Click below the post you wish to comment under where it says either "No Comments" or indicates how many comments are already posted (ex. "2 Comments")
2. This will take you to a page where you can type your comment in a text window.
3. After writing your comment, below the window it says "comment as:" and then there is a button that probably says "google account." This is asking you to sign in through google, but you can skip this if you wish. When you hit that button, a drop down menu of options should appear, one of which is "anonymous." Select this option. This is the easiest way to comment without having to sign in. Just be sure to include your name in your actual comment above so we know who you are!
4. You will then be taken to a page where you'll have to re-enter a code from a random word they give you. This is just to verify that you're a real, living person and not some robot. :)
We would love to hear from you. The only thing we do request is that you refrain from posting medical advice or resources (web links, etc.). We are getting really steady information from so many doctors and nurses already that its sometimes hard to keep things from getting foggy or overwhelming. Please just use the comments to pass along your support and love to my mom and dad. Thank you!
1. Click below the post you wish to comment under where it says either "No Comments" or indicates how many comments are already posted (ex. "2 Comments")
2. This will take you to a page where you can type your comment in a text window.
3. After writing your comment, below the window it says "comment as:" and then there is a button that probably says "google account." This is asking you to sign in through google, but you can skip this if you wish. When you hit that button, a drop down menu of options should appear, one of which is "anonymous." Select this option. This is the easiest way to comment without having to sign in. Just be sure to include your name in your actual comment above so we know who you are!
4. You will then be taken to a page where you'll have to re-enter a code from a random word they give you. This is just to verify that you're a real, living person and not some robot. :)
We would love to hear from you. The only thing we do request is that you refrain from posting medical advice or resources (web links, etc.). We are getting really steady information from so many doctors and nurses already that its sometimes hard to keep things from getting foggy or overwhelming. Please just use the comments to pass along your support and love to my mom and dad. Thank you!
Saturday, April 5th Update: GRAPENEHISODA
OK everyone, this is Tim posting - which means you now have an artist reporting rather than a nurse, so you'll have to forgive any medical misspellings or gaps in knowledge. There are many degrees of separation between art speak and doctor speak. Thank you Flora for keeping everyone so well updated!
I was able to travel down for the night and stay with Dad in his room. Mom and I are here now, waiting on doctors to make their rounds. Here is the update:
- Bronchoscopy went well yesterday. They were able to get a lot out, but it did seem to leave him feeling pretty raw in his lungs last night.
- Heparin is started, which will thin his blood some to prevent future clotting. Only negative with this so far seems to be that his face is stubbly and the nurses advised against shaving him (for fear of cutting his face, causing extra bleeding). So Mom's kisses will be a little scruffy. :) She rolled with it: "That's OK. We can go with the Duck Dynasty look for now!"
- His PICC line was switched to his other arm.
- The night was uneventful, with Dad resting and the nurse being very attentive to both Dad and me (bringing ME an extra blanket. Dad stays pretty hot so they keep his room like an icebox, which he prefers).
- This morning they have strapped an inflatable, vibrating vest thing-y around his chest (artist speak, not doctor speak) that is supposed to help loosen any gunk in his lungs. (10am: just did the vest procedure and he did great. No drop in any numbers and said it felt fine on him. This should help him keep things loose and better suctioned going forward)
- His numbers today already show improvement, and appear to confirm that yesterday's treatments are working: Temperature 98.7 and white blood cell count down to 18 (still elevated, but lowest it's been since this infection started and he had to go to ER. And 7 points down from yesterday!)
- Still not very "verbal," and has more difficulty spelling words with alphabet system. It's possible this is due to the medication he is on making him drowsy. Despite his difficulty spelling, he did just spell for Mom and me: "GRAPENEHISODA" Took us a moment, then realized he wants a grape soda (brand name Nehi)! He wants to taste something - grape soda specifically! Unfortunately, nurse says no due to possible drip/interference with trach. Instead, he gets a lemon mouth swab. Sorry, Dad. :(
I also wanted to add my own huge THANK YOU to everyone who has been helping with my dad. In so many ways you have helped him by either helping my mom or Becky and me. It has become a kind of "pay it forward" thing: where your help to us has made it possible for us to pass that help along to Dad. When this thing first started, and I was driving with my mom between one place or another and several church friends were simultaneously mobilizing to help move storage stuff here or there, I told Mom that the most difficult part of moving to Fort Wayne was that we would have a harder time being readily available should something significant happen to them. We tried not to get our hopes up too much when they entertained moving to Fort Wayne to be near us, but I can't deny the disappointment when they didn't. That said, when driving around with my mom and already seeing the friends and church members flooding in to help however needed, I told her that I could see now just how loved and supported they are here. How, even though my sister and I wish we could be more present for every part of this process, we can see that Mom and Dad are in really, really good hands. Thank you for being such good friends to my parents. It means more than I am able to express.
I was able to travel down for the night and stay with Dad in his room. Mom and I are here now, waiting on doctors to make their rounds. Here is the update:
- Bronchoscopy went well yesterday. They were able to get a lot out, but it did seem to leave him feeling pretty raw in his lungs last night.
- Heparin is started, which will thin his blood some to prevent future clotting. Only negative with this so far seems to be that his face is stubbly and the nurses advised against shaving him (for fear of cutting his face, causing extra bleeding). So Mom's kisses will be a little scruffy. :) She rolled with it: "That's OK. We can go with the Duck Dynasty look for now!"
- His PICC line was switched to his other arm.
- The night was uneventful, with Dad resting and the nurse being very attentive to both Dad and me (bringing ME an extra blanket. Dad stays pretty hot so they keep his room like an icebox, which he prefers).
- This morning they have strapped an inflatable, vibrating vest thing-y around his chest (artist speak, not doctor speak) that is supposed to help loosen any gunk in his lungs. (10am: just did the vest procedure and he did great. No drop in any numbers and said it felt fine on him. This should help him keep things loose and better suctioned going forward)
- His numbers today already show improvement, and appear to confirm that yesterday's treatments are working: Temperature 98.7 and white blood cell count down to 18 (still elevated, but lowest it's been since this infection started and he had to go to ER. And 7 points down from yesterday!)
- Still not very "verbal," and has more difficulty spelling words with alphabet system. It's possible this is due to the medication he is on making him drowsy. Despite his difficulty spelling, he did just spell for Mom and me: "GRAPENEHISODA" Took us a moment, then realized he wants a grape soda (brand name Nehi)! He wants to taste something - grape soda specifically! Unfortunately, nurse says no due to possible drip/interference with trach. Instead, he gets a lemon mouth swab. Sorry, Dad. :(
I also wanted to add my own huge THANK YOU to everyone who has been helping with my dad. In so many ways you have helped him by either helping my mom or Becky and me. It has become a kind of "pay it forward" thing: where your help to us has made it possible for us to pass that help along to Dad. When this thing first started, and I was driving with my mom between one place or another and several church friends were simultaneously mobilizing to help move storage stuff here or there, I told Mom that the most difficult part of moving to Fort Wayne was that we would have a harder time being readily available should something significant happen to them. We tried not to get our hopes up too much when they entertained moving to Fort Wayne to be near us, but I can't deny the disappointment when they didn't. That said, when driving around with my mom and already seeing the friends and church members flooding in to help however needed, I told her that I could see now just how loved and supported they are here. How, even though my sister and I wish we could be more present for every part of this process, we can see that Mom and Dad are in really, really good hands. Thank you for being such good friends to my parents. It means more than I am able to express.
Friday, April 4, 2014
Results of CT -April 4
The CT scans of his chest, abdomen and pelvis showed no new infections. However, they did find a PE (pulmonary embolus) straddling the left and right pulmonary arteries. They will treat this with full dose IV Heparin starting tonight.
First, he will have a bronchoscopy to clean out the large amount of mucus plugs that they found in his lungs. There is also pleural fluid in both lower lobes.
Treatments always have risks. Please pray for safety.
First, he will have a bronchoscopy to clean out the large amount of mucus plugs that they found in his lungs. There is also pleural fluid in both lower lobes.
Treatments always have risks. Please pray for safety.
April 4th
WBC 25 today. Heading to CT after they change PICC. Please pray for safe transport and answers.
Thursday, April 3, 2014
Thursday morning April 3rd
"Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” ― Viktor E. Frankl, Man's Search for Meaning
Mom was able to sit down with the neurologist today and have a "comfortable conversation. It felt like we were discussing a person, not a patient" She asked Dr Rorick for his advice on how to handle those times when Dad makes statements about "getting out." He likened GBS to a prison term - said that sometimes they can be commuted but that you learn to pick away and cope each day. He said, "It takes as long as it takes. It isn't forever. There is an end. Each day is one day closer to better." This reminded Mom of Viktor Frankl's Man's Search for Meaning. (I think he realized at this point that he is in a whole new league with Mom - she has depth he has only just begun to tap). He encouraged her to provide stimulation and orientation to day and night. He was not a fan of using an electronic talking clock but instead encouraged her to just employ heavy use of "Good morning" "Good night" etc.
If you would like to send Dad a card with encouragement we would welcome your greetings and will make sure they are read to him. Cards can be sent to:
10775 Gleneagle Dr
Union, KY 41091
Good news-
~Last night's cannula change was great. HR only dropped to 64 for 3 seconds.
~WBC's dropped to 19.3 today
~His tube feedings have been restored to 70ml/hour- his goal! And he is tolerating it well!
Ongoing-
Dad had a drop in BP this morning during suctioning, but returned to normal following a fluid bolus.
Still awaiting word from Anthem on transfer to LTAC.
Becky returns home today. Tim will be in Cincinnati on Friday/Saturday.
Mom was able to sit down with the neurologist today and have a "comfortable conversation. It felt like we were discussing a person, not a patient" She asked Dr Rorick for his advice on how to handle those times when Dad makes statements about "getting out." He likened GBS to a prison term - said that sometimes they can be commuted but that you learn to pick away and cope each day. He said, "It takes as long as it takes. It isn't forever. There is an end. Each day is one day closer to better." This reminded Mom of Viktor Frankl's Man's Search for Meaning. (I think he realized at this point that he is in a whole new league with Mom - she has depth he has only just begun to tap). He encouraged her to provide stimulation and orientation to day and night. He was not a fan of using an electronic talking clock but instead encouraged her to just employ heavy use of "Good morning" "Good night" etc.
If you would like to send Dad a card with encouragement we would welcome your greetings and will make sure they are read to him. Cards can be sent to:
10775 Gleneagle Dr
Union, KY 41091
Good news-
~Last night's cannula change was great. HR only dropped to 64 for 3 seconds.
~WBC's dropped to 19.3 today
~His tube feedings have been restored to 70ml/hour- his goal! And he is tolerating it well!
Ongoing-
Dad had a drop in BP this morning during suctioning, but returned to normal following a fluid bolus.
Still awaiting word from Anthem on transfer to LTAC.
Becky returns home today. Tim will be in Cincinnati on Friday/Saturday.
Wednesday, April 2, 2014
April 2nd
Becky, bless her heart, has been recording the day's events and just called me with a meaty report for the blog. They have been so busy today, bounced between one conversation and the next, that communication can sometimes be delayed.
Currently, Dad has had a welcome dose of Dilaudid (due to trach pain and generalized pain) and a sleep aid and is resting.
Last night's 4 am trach change was mostly uneventful with only a minor drop in heart rate to the 60's and return to his normal with no intervention.
Dad has not been absorbing his tube feedings as well as he has in the past, so they have stopped and then slowly restarted his rate. They have given him a medication (Reglan) to help with absorption.
Dad's return to LTAC is still pending- waiting on insurance approval and medical clearance.
Over the past few days Dad's white blood cell count has plateaued at 23. Dr Springman (Infectious Disease) and Dr Lamar (Head of infectious Disease) both consulted on his case today. They did a physical assessment of him-looking for any signs of infection (redness, bumps, etc) and found nothing. They asked dad if he felt like he has had a fever the past few days and dad motioned "yes". His vital sign record has shown temps in the 99s with one in the 100s. They said that he still has a UTI, and that the chest X-ray remains abnormal- possibly due to mucus. They have started him on an anti-fungal in addition to his antibiotics. They recommend a CT scan to look for abscesses and further sources of infection but will wait a few days because of the danger associated with transporting him.
His PICC line (peripherally inserted central catheter) will be removed and replaced to prevent possible infection.
Occupational Therapy met with them again and said that they are doing all the right range of motion exercises.
Dad, once again, spelled "Get me out of here". He has made this request at each unit he has been in, including ER. Mom, with as much tenderness as possible assured him that if it were in her power she would throw him over her shoulder and they would run away together. Becky, was able to discuss with dad her emotions, from her month long hospitalization 5 (?) years ago, of feeling trapped, powerless and frustrated, and give voice to some of the same feelings that he must be experiencing. She said that he gave her lots of "yes" jaw movements. If anybody can sympathize with a long unexpected confining illness, it is Becky. She was the perfect comfort for him.
I was in contact with a support group today and was able to send mom and Becky lots of helpful advice from survivors of GBS. Becky offered to read some of their words to him but he was exhausted at this point.
Many of the GBS survivors commented on the need to have a communication system (check), to have a FAN! (check-Tim drove all over Clifton to buy him one), have family nearby (check), keep a record of events during their illness (check), take pictures to show them after they recover (check), read to them (check), share current events and family happenings (check) and to have simple things like your hair shampooed (check-accomplished by Nancy and Becky again today).
Mom was able to visit with the chaplain today and, I believe, found comfort in her words. She was encouraged to talk to friends that won't try to fix her but will let her experience her emotions as they come. Also, to see the resources that her friends are offering as a "menu" of sorts. Some days certain things taste better than others, some days you can't imagine eating anything being offered, and some days only a very specific thing will hit the spot! Mom stated "I have enough strength for today" The chaplain likened that to the Israelites experience during their exodus from Egypt- God provided the manna for each day. Any manna that they tried to horde quickly spoiled, but if they trusted him they received a fresh supply each morning.
Becky and mom were blessed unexpectedly by an anonymous kind soul leaving a Christ Hospital gift certificate in their room. Mom says "Thank you, friend out there! :)" The sweet lady in the cafeteria kept sending them back to get more items until they used every penny! ;)
Mom and Becky, in addition to being comforted, have also found time to comfort others. They have stopped to give directions to many and have been able to speak words of encouragement to those put in their path.
Mom says "Thank you Christ hospital for another night in a real room with a bed (They have a free sleeping room) We are getting expert at finding our way down to Steve at 4am for his trach swap. Even with eyes slit and in our "jammies"
Please continue to pray for restful and uneventful nights for all 3 of our precious family members tucked into Christ Hospital.
Currently, Dad has had a welcome dose of Dilaudid (due to trach pain and generalized pain) and a sleep aid and is resting.
Last night's 4 am trach change was mostly uneventful with only a minor drop in heart rate to the 60's and return to his normal with no intervention.
Dad has not been absorbing his tube feedings as well as he has in the past, so they have stopped and then slowly restarted his rate. They have given him a medication (Reglan) to help with absorption.
Dad's return to LTAC is still pending- waiting on insurance approval and medical clearance.
Over the past few days Dad's white blood cell count has plateaued at 23. Dr Springman (Infectious Disease) and Dr Lamar (Head of infectious Disease) both consulted on his case today. They did a physical assessment of him-looking for any signs of infection (redness, bumps, etc) and found nothing. They asked dad if he felt like he has had a fever the past few days and dad motioned "yes". His vital sign record has shown temps in the 99s with one in the 100s. They said that he still has a UTI, and that the chest X-ray remains abnormal- possibly due to mucus. They have started him on an anti-fungal in addition to his antibiotics. They recommend a CT scan to look for abscesses and further sources of infection but will wait a few days because of the danger associated with transporting him.
His PICC line (peripherally inserted central catheter) will be removed and replaced to prevent possible infection.
Occupational Therapy met with them again and said that they are doing all the right range of motion exercises.
Dad, once again, spelled "Get me out of here". He has made this request at each unit he has been in, including ER. Mom, with as much tenderness as possible assured him that if it were in her power she would throw him over her shoulder and they would run away together. Becky, was able to discuss with dad her emotions, from her month long hospitalization 5 (?) years ago, of feeling trapped, powerless and frustrated, and give voice to some of the same feelings that he must be experiencing. She said that he gave her lots of "yes" jaw movements. If anybody can sympathize with a long unexpected confining illness, it is Becky. She was the perfect comfort for him.
I was in contact with a support group today and was able to send mom and Becky lots of helpful advice from survivors of GBS. Becky offered to read some of their words to him but he was exhausted at this point.
Many of the GBS survivors commented on the need to have a communication system (check), to have a FAN! (check-Tim drove all over Clifton to buy him one), have family nearby (check), keep a record of events during their illness (check), take pictures to show them after they recover (check), read to them (check), share current events and family happenings (check) and to have simple things like your hair shampooed (check-accomplished by Nancy and Becky again today).
Mom was able to visit with the chaplain today and, I believe, found comfort in her words. She was encouraged to talk to friends that won't try to fix her but will let her experience her emotions as they come. Also, to see the resources that her friends are offering as a "menu" of sorts. Some days certain things taste better than others, some days you can't imagine eating anything being offered, and some days only a very specific thing will hit the spot! Mom stated "I have enough strength for today" The chaplain likened that to the Israelites experience during their exodus from Egypt- God provided the manna for each day. Any manna that they tried to horde quickly spoiled, but if they trusted him they received a fresh supply each morning.
Becky and mom were blessed unexpectedly by an anonymous kind soul leaving a Christ Hospital gift certificate in their room. Mom says "Thank you, friend out there! :)" The sweet lady in the cafeteria kept sending them back to get more items until they used every penny! ;)
Mom and Becky, in addition to being comforted, have also found time to comfort others. They have stopped to give directions to many and have been able to speak words of encouragement to those put in their path.
Mom says "Thank you Christ hospital for another night in a real room with a bed (They have a free sleeping room) We are getting expert at finding our way down to Steve at 4am for his trach swap. Even with eyes slit and in our "jammies"
Please continue to pray for restful and uneventful nights for all 3 of our precious family members tucked into Christ Hospital.
Tuesday, April 1, 2014
Update from Becky and Nancy April 1
From Becky-
Dad had a 6th episode of bradycardia this morning as they replaced a tube in his trach called the inner cannula. But this time, his heart stabilized (and quickly) without intervention. He has been stable since.
My mom and I have slowly been catching up on our sleep. The hospital gave us a "sleeping room" which is a regular hospital room that families can reserve as a resting spot. We try to request it each day and its free!! I feel like we are members of this hospital! Lol-like we have ownership in it, and that they should consult the Parsleys for any major decisions the hospital makes...budgets, improvements, etc ;)"Our "belongings" are spread all over! LTAC, 2south(sleeping room), dad's room...we've moved in ;)
From mom:
Neurologist this morning said good to establish a plan/ pattern regarding being bedside. Said hard as it is I should be predictable in leaving and let him know where going and when I'll be back. Said then he can know passing of days and can anticipate. Also he can be free to not be interrupted or feel he has to be "on" for me. He said we must give him the time he needs and expects things will return tiny, sometimes unseen and randomly. He has no fever and still getting antibiotics.
Dr Lanka said he can return to LTAC when social worker receives re-certification, which is in the works.
We might have a touch of sleep deprivation... Becky, this morning, "Where are my clothes? Oh they're on me!"
Little tube/big issue
It's 4 am and the whole family is up celebrating a successful cannula change on Dad's trach. He did have a dip in heart rate (38) but only for a second and it needed no intervention. (They've been instructed to keep the crash cart nearby)
Becky said she is a bit sore to do another set of cartwheels, so I am adding the video replay of her earlier performance. I hope the video will play on blogger.
IMG_1910.3gp
Becky said she is a bit sore to do another set of cartwheels, so I am adding the video replay of her earlier performance. I hope the video will play on blogger.
IMG_1910.3gp
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