An example of a therapeutic activity with dad...

The game above is called, "Blink." the purpose of this game is to match colors, shapes or numbers. It is a fast moving game that engages both the right and left side of the brain. It requires dad to stay focused, process numbers, organize thoughts, etc. Nathan and dad played for 30 minutes. Dad won two rounds, Nathan won one round.

 It was a fun game that exercises the brain without feeling like dad is doing "therapy."

Day 2 at home - January 27, 2013

Sunday morning dad got up, had coffee, and had breakfast with the family. He said he slept great because it was his first time being able to sleep at home. Dad decided that he wanted to go to Church this morning, so he got around and we took him to church. It was a wonderful morning. Dad was greeted by so many people, it was overwhelming for even us. There were a lot of tears and a lot of , "Praise the Lords." dad truly is a walking, talking testimony to the amazing power of Christ. Many were very encouraged just at seeing him walk into the church doors.

After church dad was very tired. He took sometime to rest before Aunt Denise and Uncle Bruce showed up for a visit. Around noon, Denise and Bruce showed up for a visit. Dad took them down to the basement to show them the new bar and pool table. Then they sat and visited for a while. Dad really enjoyed their company.

After Denise and Bruce left, dad and I sat down for our first at home therapy session. I reviewed with dad why he has to be on a schedule everyday (he has to be on a schedule because dad still needs help organizing his thoughts and getting into a routine) then we spent about 10 minutes working on his schedule for Monday. Next we worked on word sequencing, then worked on addition. Everyday we see more and more improvements in dad. It really exciting to be a part of his healing. Though there are still some gaps, the gap is slowly closing.

After therapy time with me, dad worked on a puzzle with mom for about 25 minutes. (which technically is therapy without calling it therapy). In 25 minutes dad put together a 50 piece jigsaw puzzle.

 Dad had some free time, he used that time to rest and relax, then he got to do some more therapy with Chantel. Together they wrote down dad's schedule for the day, worked on spelling and thinking skills, then worked on some categorization. Again, dad did very well. After this time was done, dad was able to spend some time with the grand kids, then it was time to start the nighttime routine.
I know dad really struggles with having to be on a routine (because he is 54 and knows he was able to do the things without help before). However, it is a very important part of his recovery.

Prayer requests for dad:
- that he will have patience with us as we work with him.
- that dad will continue to improve every day!

Day 1 at home - January 26, 2013

We brought dad home Saturday morning.  He was so excited to be home! The first thing dad did was walk down to the basement to look at the pool table that he does not remember buying. All of the immediate family was there to celebrate Christmas with dad. He was so excited to see everyone open presents and to see what presents have been waiting for him under the tree.

It was a wonderful day for dad and us! What a blessing to have him home! Dad took some time to rest and relax in the afternoon, then we had Aunt Debbie, Uncle Tim and Codi out for a visit in the evening. We all learned not to trust dad when he says he can't play pool. Dad kicked all of our butts!

Day 35 - Day 10 of Acute Rehab - January 25, 2013

Today was dad's last day of Acute Rehabilitation Therapy at Saint Joseph Mercy Hospital. Tomorrow, exactly 5 weeks after dad's cardiac arrest we will be taking him home.


Because this was dad's last night in the hospital, the Doctor agreed to allow us to take dad out to eat. We took dad to Bob Evan's for dinner. He was very excited to be stepping outside and leaving the hospital. He was surprised by the cold, but didn't care too much about it because he was getting out. Mom, Amber, Nathan and I all had a very nice dinner with dad. We talked about work, home, the dogs, etc. Although dad was having a good time, you could tell he was very tired. I am not sure if he was overwhelmed by being in a new place or if he was just tired. At one point during dinner he took his glasses and hat off and put his head down. By 6:30/7:00 p.m. he was ready to go to bed.

We asked dad what he wanted to do for his first day home... he said that the first thing he was going to do was to take Benny for a walk in the field behind his house. The next thing he wanted to do was to celebrate Christmas. So, this is exactly what dad is going to get to do. All of us kids are getting together tomorrow with food, presents, Christmas decorations, etc. Tomorrow we finally get to celebrate Christmas. I cannot wait!!


So...whats the plan for dad when he gets home?

1. Getting dad on a routine/schedule. The doctor said that this is going to be the biggest help for getting dad adjusted to home life. Chantel helped to organize a daily routine/schedule for dad. He has a "Non-therapy day" and a "Therapy Day" schedule. These schedules will be put on a white board for dad to see each day.

2. Out Patient Therapy. Dad will start out patient rehabilitation on Tuesday. He will be driven to Chelsea Hospital for this out patient therapy. On Tuesday we will find out how many days a week/hours a day he will need to be in Chelsea for rehab.

3. At home therapy. We have spent a lot of time meeting with dad's therapists, getting activities from them, researching and creating therapeutic activities for dad to do at home. Today, I received a copy of all of the therapists' notes so we know exactly where dad left off with therapy. This will help us to know what to work on with him at home to help him to continue to grow.

4. 24/7 Supervision. Dr. S. stated that Dad still needs 24/7 supervision in the home. This is temporary and dad will need less supervision as he continues to improve. To help mom and Tom (who live in the house now), Nathan and I will moving in to help with the supervision and in home therapy for dad.


Ways to pray for Dad:

• Pray that we continue to see huge improvements in his cognitive functioning.
• Pray that he transitions well to being back at home.
• Pray that the out patient/home therapy help dad make big steps forward. 

Dad is coming home...

We just got the phone call...
                            

                              ...Saturday morning dad will be coming home!

Day 33 - Day 8 of Rehab - January 23, 2013

Yesterday we met as a family with all of the doctor's and therapists who have been working with dad. The cardiologists are tentatively planning on doing dad's heart surgery in three to six months. They checked the pacemaker/defibrillator and everything looks good.

Dr. S - the main doctor who oversees dad's rehab told dad that:

1.) He is making such good progress he has completely shocked everyone sitting at the table for the meeting; and
2.) There are still some pretty big gaps in his cognitive functioning.

Dr. S. stated that their biggest concern for dad was his thought processes tell him (dad), that he is back to normal and doing great), when the reality is that he still has a long road of recovery a head of him. Dad thinks/assumes he can do things that he can't. This poses a potential safety problem for dad coming home. As he is right now, he is going to need 24/7 supervision. This means that if dad decides to go outside for a walk someone has to go with him because dad could very easily get lost and not find his way home.

Is this it for dad? Absolutely not. This is just where dad is at right now in the timeline of his recovery. Does this mean that this is where he will be for the rest of his life? Dr. S and the therapists do not believe so. Dad has not hit his plateau yet, every day they continue to see more and more improvements.

For example: when dad first got into therapy the therapist would write down a word and tell dad to copy it. Though it seems like a simple task, dad was unable to do this. (example - Therapist would write: shoes; dad would write tuifnc). Also whenever dad would write, he would write wherever his had hit the piece of paper. Now, he is able to copy words without too much difficulty.  Instead of writing all over the piece of paper he is starting to write the words in columns, organizing his thoughts and the words.

So...when does dad get to go home? At this point we do not know for sure. Sadly, insurance will dictate the care that dad receives. The doctor's are pushing to have dad stay another 7 days (Next Monday or Tuesday). The reality of insurance means that dad could be home as early as Friday. When dad gets released to come home he will do outpatient therapy three times a week. The doctors and therapists strongly informed us that while dad is at home, he is going to need a tremendous amount of supervision and structure. They also said that for right now dad will not be allowed to drive, operate power tools, or tools. This is not a "forever" thing. These are just the stipulations for where dad is at today, January 23, 2012.

The therapists have asked that we (his kids/wife) start sitting in on the therapeutic sessions so that we can see what they do with dad, so that when he gets home we can continue to work with dad to help him progress. I was able to sit in on his speech therapy time and was able to talk with the Physical Therapist. During Speech time, dad was given geometric blocks and was shown pictures, he had to create what he saw in the image using the blocks. Dad did better than the therapist thought he would do. She also showed dad a series of 3 pictures and told him to put them in order. Dad was able to do this without much difficulty, however when he was asked to explain why they had to go in that order he struggled to find the right words/explanation.

During his second speech therapy time dad got to work with money. He remembered the value of coins and dollars. When asked to count out a certain amount of money he struggled some. The biggest problem he had with this was that he would not focus and he would make mistakes. His mind was moving slower than his hands. He would count $2 out loud but his hand moved 4 times, giving her $4 instead of $2. If he was able to slow himself down enough to focus on what he was doing he did a much better job. When given a prompt He would re-count the money and realize that he did not do it right.

During dad's PT time, they took him for a walk down to the first floor gift shop. This was very eye opening for the family to see dad in this way. He really struggled with finding the elevator (but he did find it by chance). Once on the main level he could not tell the difference between the coffee shop and the gift shop. Once in the gift shop he was asked to look for a card and flowers. There was so much to look at he had a very hard time focusing  to be able to find the cards. He would pick up books and say, " I know that the cards should look like kind of like this, but it's not this." After some time, he was unable to find cards or the flowers (even if he was standing right next to them).

Again, this is NOT something to get discouraged about. Because many times dad has struggled to do something one day, the next day when asked to do the task again he could do it with little to no difficulty. He is improving every single day, at a rate that has the therapists in "shock and awe" (as dad would say).

With where dad is at today, we as a family are starting to make preparations for dad to come home. Dad is going to have to have a white board schedule for each and every day. He is going to have a "therapy day schedule" and a "non-therapy day schedule."  Dad is going to have to have a lot of structure in his day (for example - at 9:00 dad works on puzzles; 10:00 dad has structured free time; 11:00 dad works on some of the brain activities given to the family; etc.).

This means a lot of changes for all of us, but I can guarantee you that you will never hear a single complaint from anyone in the family. If this is where dad stays, we will take it. Fortunately, the doctor's think that with continued acute therapy we will continue to see drastic improvement. At the end of the day, we are SO extremely thankful to have dad with us we don't care about the changes that may be coming and we will do whatever we can to help dad.

Day 30..To the Emergency Department

As a small token of appreciation, this morning Uncle Tim, Aunt Deb and Codi took bagels and cream cheese to the ED Staff. This weekend is the "usual weekend staff" who was on duty when Uncle Clarence was brought in. Most of the staff was there and they were all very happy to hear how well Clarence is doing. In the EMS services there is not a lot of happy endings when it come to cardiac arrest. For the staff to hear of a "good save" was very energizing for them; and of course, the bagels and cream cheese helps too. Food is always appreciated in medicine.....

Day 29 from Aunt Deb

Today Uncle Tim, Codi and I were able to go and visit Clarence. It was good to see him doing so well. He does seem to be much more content and comfortable with where he is. He is happy to be doing work to help get him home. His memory is much better, his verbal skills are much improved and, of course, his sense of humor is still with us. We sound like a broken record every time some asks use how Clarence is doing. We say…“Every time we see him he is doing so much better then then the time before. He truly is our Christmas miracle.”

Tim and I were invited to Pulaski’s firefighter’s recognition dinner; Tim thought it would be a good time to update everyone on Clarence’s progress. Over the past four weeks the firefighters have individually sought Tim out to inquire about Clarence. Tim did a beautiful job informing the department of how well Clarence is doing, as well as, thanking them for giving Clarence back to us. He said several times. “Thank you for giving me more time with my brother.” Tim had an appreciation plaque made on behalf of the entire McEldowney Family and presented to the fire chief of Pulaski.

To our surprise and delight, Tom Cure and his wife were invited to the dinner too. Tim had not met him when they came to the hospital, and again, Tim could not thank Tom enough. Tom shared with us a little more about what happen at the farm that day. Polaski fire department also presented Tom with a plaque for helping to save Clarence. Just as a side note I think Clarence, Tim and Tom have a boating date this summer. Having only met Tom and his wife twice, I can tell they are very special people; they are kind of heart and very generous of spirit. I think they should be honorary McEldowney’s (number 64 and 65).

Below is the pictures of the plaque, Tim and firefighter who save Uncle Clarence's life and Tom receiving his plaque from the Pulaski Chief.

Day 29; Day 4 of Rehab - January 19, 2013

Sorry that it has been a while since we have updated the blog.

Dad's surgery went very well. He was back in his room and able to do rehab the second half of the day.

Some of the neat things that we have seen over the last few days:

• We were sitting with dad while he was looking at his bible. At first we thought he was reading, until we took a closer look. He was quoting John chapter 1 from memory (his bible was open to Psalms). When he got stuck, he realized that he wasn't reading, found the book of John in his bible and read all of the first chapter out loud. 
• I started reading Philippians to dad (he had memorized the book of Philippians before he went into cardiac arrest). He started finishing my sentences as I read aloud to him.
• Dad is very busy during the weekdays. He has therapy from 9:00-12:00 a.m. has a break for lunch and rest, then he is back to work from 2:00-4:00 p.m.
• In talking with the speech therapist today (1/19/13), she is seeing some big improvements in her time with dad. Three days ago she had him do an activity with blocks (it took him about 10 minutes to do), today he could do the same activity twice in less than 5 minutes. When asked what they do during this therapy dad will say, "They ask a lot of pointless questions. Sometimes they are hard. Sometimes they are easy." At times they will read dad a story and have him paraphrase the story or they will ask a bunch of questions. Mom was with dad while they were doing this activity. Dad couldn't remember much about the story so he made one up. My mom said that dad made up a very elaborate, funny story. She said that the Speech Therapist was trying not to laugh (because they didn't want to hurt dad's feelings if he was being serious). Dad finally finished his story looked at the speech therapist and said, "I'm obviously b-s-ing you. I have no idea what the story was about." Every one got a good laugh. His sense of humor is definitely still in tact. 
• During Physical Therapy they spend a lot of time doing activities that dad sees as being "pointless." They will tell him to move his foot up and down 15 times, then move the other foot 15 times, take him for walks, have him walk sideways using a rail, etc. 
• During his occupational therapy they have him put things in order, work on math skills, fine motor skills, living skills, etc. 
• Dad discovered a few days ago that he forgot how to subtract. This was very frustrating for him to find out. The nurse gave him a clip board with paper. He keeps this next to his bed so that he can practice on his own when he gets bored. He also likes to practice writing.
• Dad loves to go on walks. They allow us to walk with dad around the floor, but he is not allowed to walk on his or around to any other parts of the hospital. 

Dad is in good spirits, but he is ready to go home. 

VISITORS -->  If you want to visit dad, the best time to do this is on a Saturday or Sunday. Please call (Tom, Amber, Aubrey, Chantel, Nathan or Renee) in advance so that we don't have 20 people in dad's room at one time. Dad loves having company, it helps to make the time pass. 

PHONE CALLS --> Dad does have a phone in his room. If you are interested in speaking with him he loves to talk on the phone (you can get the number from any of the above people). We ask that you call in the evening after his therapy is done. 

Day 26; Day 1 of Rehab - January 16, 2013

Tom was able to spend most of the day with dad today. He arrived to St. Joe's around 10:00 o'clock this morning. Tom was able to sit in with dad during the morning sessions of Occupational and Speech Therapy. The purpose of today is just to assess where dad is at. For dad's occupational  therapy, they tested the strength in his fingers and hands. It turns out that dad's right hand is considerably stronger than his left hand (he is left handed so this was a bit of a surprise).  This just means that they are going to work on strengthening his dominant hand.

During his time with the Occupational therapist they showed him a series of four pictures that he had to put in order. The first series were pictures of how to do laundry. He put the pictures in order with no problems at all. The next series of pictures were how to make a bed. This he struggled with a little bit, mixing up a few of the steps but he was able to fix his mistake without any help or prompts. After putting these series of pictures in order, he then had to put shapes in patterned order (by shape and color). They timed dad to see how long it would take him. I am not sure how long it took him to do it, but in the he did it so I see that as a good thing. :-)

Next, dad traveled down to do speech therapy. They asked dad a lot of questions.  He gets asked these same basic questions every time and with every therapist:

1. What's your name? (Dad answers this correctly every time, unless he wants to be sarcastic, then he will tell people his name is Jose or Barack Obama).
2. How old are you? (He has not been able to answer this correctly yet)
3. What is your date of birth? (every time he is able to answer the correct month and day, but struggles to remember the year he was born. He knows that he was born in the 1950's but does not remember the specific year).
4. What year is it? (He does not answer this correctly).
5. What is today's date? (He seems to remember that the month starts with the letter "J" but does not remember that it is January).

Next they quizzed dad with a lot of "Yes/No" questions. To assess his memory and retention they would read dad stories, then ask him questions/details from the story. Tom said that on this task he scored a 60%.

By the time he finished up with these two therapists, it was time for lunch. The morning therapy wore dad out. He went back to the room, ate some food and fell asleep. He was so fatigued that they could not wake dad up at 2:00 p.m. for his afternoon therapy. The doctor said that this is very normal and that in a few days, dad will be adjusted to the new schedule.

Later on in the afternoon a cardiologist came in to check on dad's defibrillator. They did a data download and discovered that one of his lines had moved. They took dad down for an X-Ray, this confirmed what the data said. So, dad is now scheduled to go into surgery to have the defibrillator lines put back in their proper spots on his heart. It is a minor procedure and should only take about 30 minutes to do. Dad should be able to participate (with limited movement) in his therapies for the afternoon.  

Prayer requests for dad:

• Pray that his mind will continue to make the necessary connections.
• Pray that his surgery will go well tomorrow.
• Pray that he will have continued peace of mind about where he is at.

Day 25 - January 15, 2013

I can't speak too much about the first half of dad's day because I was at work. The bottom line: dad was ready to get out! When Nathan, Amber, Mom and Tom told dad that he was leaving it took him exactly 2 minutes to change into his jeans and a sweatshirt. Dad was also able to get his shoes on (and tie them without any help).

Today has ended on an amazing note! As you can see in Chantel's previous post from today, dad is out of the hospital and has transitioned into a rehabilitation program. Nathan, Amber, Dad and I drove out to St. Joseph Mercy Hospital. The entire drive out dad was joking around with us. He was SO excited to be out of the hospital! He said that when he met his doctor he would tell him/her that he had a brain injury, then introduce himself as Barack Obama. ;-) What a funny guy!

When we arrived to the hospital Nathan dropped us off and we walked right into the rehabilitation center. The staff were all shocked to see dad walk in, stick his hand out, shake their hands, and introduced himself by name. Dad did amazing. He spent two hours answering questions, getting looked over by the doctor, meeting different staff, etc. We were all very excited that he was able to focus for so long. He answered everything so well! He struggled with remembering the date and answering a few questions, but over all he did amazing.

We were able to take dad on a tour of the new facilities. Shortly after the tour they delivered food... Good news: Dad LOVED the food. Tomorrow after breakfast dad will start the hard work of his recovery. I am confident that we will see drastic improvements in dad. I am so thankful for everyone who prayed for my dad. Please don't stop.


During the first week of dad being in the hospital I heard this song. I am pretty sure the song was written for us. At first I couldn't listen to it without crying. I wanted to share the song with you:

"Long Way Home"

I set out on a great adventure
The day my Father started leading me home
He said there's gonna be some mountains to climb
And some valleys we're gonna go through

But I had no way of knowing
Just how hard this journey could be
Cause the valleys are deeper
And the mountains are steeper than I ever would have dreamed

But I know we're gonna make it
And I know we're gonna get there soon
And I know sometimes it feels like we're going the wrong way
But its just the long way home

I got some rocks in my shoes
Fears I wish I could lose
That make the mountains so hard to climb
And my heart gets so heavy with the weight of the world sometimes

There's a bag of regrets,
My should've beens, and not yets
I keep on dragging around
And I can hardly wait for the day I get to lay them all down

I know that day is coming
I know its gonna be here soon
And I won't turn back even if the whole world says I'm going the wrong way
Cause its just the long way home

When we can't take another step
The Father will pick us up and carry us in His arms
And even on the best days, He says to remember we're not home yet
So don't get too comfortable
Cause really all we are is just pilgrims passing through

Well, I know we're gonna make it
And I know we're gonna get there soon
So I keep on singing and believing
What all of my songs say

Cause our God has made a promise
And I know that everything He says is true
And I know wherever we go
He will never leave us
Cause He's gonna lead us home

Every single step of the long way home
(Keep going, we're gonna make it)
(I know, we're gonna make it)
(We're just taking the long way home)
(Keep going, we're gonna make it)
(I know, we're gonna make it)
(We're just taking the long way home)
(Keep going, we're gonna make it)
(I know, we're gonna make it)
(We're just taking the long way home)
(Keep going, we're gonna make it)
(I know, we're gonna make it)
It's just a long way home

By the Numbers - Day 25

According to publications I've recently read from the CDC and the American Heart Association:

~ 300,000 people in the United States experience a out-of-hospital cardiac arrest

~ 32% of cardiac arrest victims get CPR from a bystander.  CPR provided immediately after sudden cardiac arrest can double or triple a victim’s chance of survival

~ 21.6% of patients were pronounced dead after resuscitation efforts were terminated in the pre-hospital setting

~ 26.3% of patients survive to the point of hospital admission

~ 9.6% of patients survive through discharge from the hospital

Today my dad is part of the 9.6%....he has been discharged (at least from Allegiance Health) and is currently on his way to St. Joe's to participate in some rehabilitation therapies.  We are so happy to be moving onto the next phase and so is he!

.

 

We will continue to update the blog, but now that we are moving farther from the event and out of that critical care part of his recovery, it may not be on a day-to-day basis.  We will certainly try to keep up on it with major milestones as we look forward to more good things to come.  Thank you for praying with us and continuing to pray and support my dad and our whole family!

Day 24 - January 14, 2012

Dad is ready to go. We were told over the weekend that we could expect dad to be moved to a rehab facility on Monday (today). Nathan and I spent Sunday visiting various rehab places so that we can make the best decision/move possible. We were very impressed with St. Joseph Mercy Hospital. Today however, we have had many obstacles to overcome. Initially, the wrong paperwork was sent to St. Joe's, then we found out that because dad was not getting physically therapy they would not take dad until he had met with PT and they received up to date notes. I was able to advocate with the case manager, nurse, and floor supervisor to get PT in to see dad ASAP. 

PT did come in. They "taught" dad how to get out of the bed and they "worked" with him on walking. These are all things that dad has been doing on his own for sometime. However, we needed documented proof that he was doing these things. Our hope is that this will bring dad over to St. Joe's sooner rather than later.

As soon as PT left I stood at the case manager's desk until she printed and faxed over the latest notes to St. Joe's. Now, at one o'clock we wait to hear back from St. Joe's. This has definitely tested my patience. I will update more as the day goes on.

Prayer requests:

• Pray for us to have wisdom and patience with the staff/hospital.
• Pray that my dad gets placed in the best place and at the best time.
• If they cannot transfer dad today, pray that he handles the news well. (He has not been told yet that he may have to wait another day...he will be told when we no for sure that he is not moving).

Day 23 - January 13, 2013

I spent a good morning visiting with my dad.  Today and yesterday have both been somewhat slower days.  He is talkative and feels better, and so as a result he wants to get active again.  What he wants to do the most is have someone bring his shoes up to him and go for a walk outside.  Although I imagine he would be fine to go for a walk outside, its just not likely to happen today because it would be really pushing the hospital rules and protocols.  He is still considered a fall risk because he has some balance issues, but overall is in pretty good shape.  They just want to make sure that someone is with him as he walks in case he trips or mis-steps (which hasn't happened at all thankfully).  In any case, no matter how we try to explain that it is raining, and that he has no shoes right now, and that it is against the hospital rules, he keeps turning the conversation towards how he would like to go outside for a walk today.  Earlier he kept telling me, "I can't wait for your mom to get here so that we can go for a walk outside together."  I joked with him that "you do remember mom...right?!?  do you think she is the type of person who enjoys long walks outside on cold rainy days??"  At least I got a bit of a laugh out of him with that one.

He also has talked a lot about projects he is thinking of for the house.  I don't know specifically what he was referring to, but it seems like that part of him is back to normal....anytime he sits for too long, he starts dreaming of a new house project.  Even when the house is completely done and a normal person couldn't see anything else to work on...my dad can find something more to do.

We apologize for not updating yesterday.  It was very similar to the way that today is playing out as well.  Very slow for a dad who is feeling good and ready to go.  Nathan called me last night to let me know he was worried....apparently dad was scouting out where the elevators were located on the floor.  Once he found them, it took a few tries looking around the elevators, but soon he found the buttons for the elevators.  Nate said when he did that, his face just lit up.  Nate redirected him, but not without some effort.  On another of their walks, dad started noting the staircases that were at the end of each hallway....again, with each one his face lit up.  Nate was worried that as soon as someone left him unattended, he was scheming plans to break out.  Thankfully, they have ways of detecting that type of thing, and had someone to intercept if dad tries to walk unattended.  Its good that he is feeling better and that he is putting some of these pieces back together, but at the same time getting him to realize that he has to follow the rules and that there is a good reason for him to stay.

Yesterday and today, we have been working on brain exercises with dad.  He does better and better each day.  The mazes that were trouble a few days ago are now easy for him and he can get through all of them without trouble.  The worksheet where he was supposed to circle each of the stars is an easy one now as well.  We work through cards where he has to match the words with the pictures.  For example, there will be a picture of a chicken and three words: dog, cow and chicken.  He has to find the word that matches the picture and he does fairly well with this.  At this point he still gets distracted pretty easily and that is one of the difficult things about working through these exercises.  He is able to participate in 30-45 minute bursts though and when we talk to each of the different rehab facilities, they typically work for 30 minutes at a time about 6-8 times per day. 

As we were talking today, he reminded my that Michigan has a basketball game on TV that he doesn't want to miss.  I had to leave before the game, but hopefully he got the chance to enjoy it. 

Aubrey and Nate have taken the day to head towards Ann Arbor and Detroit and tour some of the different rehab facilities that we are considering.  The head nurse last night had shared with them that her father went through a similar accident and recovery process a few years ago.  She recommended that "cold calling" by showing up on a Sunday afternoon might actually be one of the best ways to see what the facilities were like and how it is run. In addition, being able to see how they are really set up, what the nurse to patient ratio looks like, what the rooms look like, what types of activities are available, etc. will make the decision easier.  It one thing to look at what the marketing department has put up on a website, but better to actually go see it before making a decision.  So far we have heard from Aubrey and Nate on two of the four places they originally plan to check out.

 

Day 21 - January 11, 2013

This morning Dad was moved out of his room in the critical care unit over into the step down unit.  He has had doctors orders to move out of the CCU for several days now because medically, if he stable and there was no reason for him to require that level of care.  However, the hospital is full and so they have been unable to move him until today....and even then he is just down the hall in step down vs. upstairs where they really think he should be.  He got to walk himself over to his new room, which is uncommon for CCU patients.  His defibrillator surgery yesterday went well and he is recovering quickly.  While I visited he kept rubbing the area where the defibrillator went in and telling me about it.  We also went for a few walks around the floor. 

In the morning, the new nurse came in and introduced herself and asked dad a few assessment type questions.  She asked him what the date was an he responded that it was the 21st of December.  She let him know that it was January 11, and he said "Oh".  But then she went on to explain that there are a lot of people who wouldn't know today's date if she asked them and told him not to be discouraged.  I was kind of surprised by his response and explained to him that December 21st is an answer that makes a lot of sense to me....it was the last full day before his accident and that it seems right that it was the date that he remembered.  It was probably the last date that he wrote down or used in any meaningful way for the past few weeks.

The plan for today was to move to the Chelsea Rehab facility.  All day we operated under the assumption that he was ready to go and from our end, all of the doctors and nurses thought he was ready to go as well.  Then, at about 3:45pm on Friday afternoon, we were called and told that instead of moving within the hour as we had thought, Chelsea didn't feel comfortable with dad participating because of his heart issues.  Granted, these were the same heart issues that we thought we had worked through by having his defibrillator implanted and that they were well aware of all week.  I was SO FRUSTRATED.  What even sadder is that Dad had been told about moving to the rehab facility and was really looking forward to it, so when they said no, he was really disappointed.

I called them to ask some further questions and express how frustrated I was that they would let us continue so far down this path without letting us know this earlier....unfortunately, being 4pm on a Friday, everyone was gone for the weekend except for the poor receptionist who answers the phones in that department.  I think what is most frustrating is that his heart situation has not really changed except to improve since the beginning of the week and so they had enough information that they could have communicated their hesitations earlier and we could have been pursuing other options. 

Instead, we are waiting out the weekend at Allegiance until our paperwork can go through for a transfer to St. Joseph Mercy in Ann Arbor.  After the initial frustrations, I think we have all settled down a bit and realize that maybe St. Joe's will be a good move as well.  They have an excellent heart and cardiovascular program and will be able to perform my dad's valve replacement surgery as well as take care of his rehabilitation therapies.  Hopefully, one move and then home instead of two.  Or perhaps, once dad gets the valve replaced if he needs another rehab, Chelsea might be an option at that point.

So in the meantime, we are waiting out the weekend in his hospital room.  In the afternoon, speech therapy stopped by to work with dad.  They had him work through some picture puzzles.  For example, there was one sheet with pictures of stars, diamonds, and circles all over the page.  They asked him to circle all of the stars on the page (no luck).   They also had some simple mazes for him to try to work through on paper (a little better but not really a success).  They had a connect the dots page (no good).  However, the very great news is that they had him try to read and so long as the print was large enough and he was focusing he remembers how to read.  He reads the numbers on the rooms as we walk the hall and he reads the signs that are hanging up in his room.  He read a sign about the Patient Care Hotline....from any room you can dial 4444 if you are at all concerned about whether you are getting good care.  We all laughed that now that he knows that, the hotline might be getting a few extra calls as dad complains about the hospital food and gets frustrated that he cannot walk outside. 

When I got back in the evening, he was up and joking around with everyone.  When I first walked into the room I asked how his therapy session went that afternoon.  He seemed really serious and asked me "Now, what is your name?  Now, you have a daughter, what is her name?  You have a son, what is his name?"  It took me a minute to realize that he was being sarcastic and mimicking the questions that all of the therapists keep asking him again and again.  He is willing to work hard, but thinks that some of the activities and questions that they ask are so silly.  He is constantly being asked questions like "What is an orange? What is this (holding up a pen) and what do you do with it?" and thankfully he is able to answer a lot of these basic questions correctly and laugh at such a silly question.  However, its impossible to figure out what he does and does not know, and sometimes it takes him time to recover some of the vocabulary and other things that are still stored in his mind, but are harder to find and recall when needed.

Later in the evening after I left, dad was moved up to the 6th floor. I hear that the move went well and that over the weekend he should have more freedom to walk around the floor, order food that he wants to eat (or I think we can even bring him in something if we would like), and have a little more space as the room is a bit bigger.

Message to Grandpa

 



Day 20 - January 10, 2013

So Aubrey just posted and I haven't read her update, but here is my update from this morning....hopefully not too much overlap.

I wasn't able to be up at the hospital yesterday, but hopefully Aubrey and Nate will be able to write an update for yesterday.  I made a point of heading up there this morning before work because he seems to be his best early in the day.  He was up and sitting in bed and had just finished his breakfast when I arrived around 8:30ish.  He had a good night last night and slept well. 

We had some good conversation and Dad is really able to communicate better, longer thoughts, and keep up on the conversations that we are having.  He is using more facial expression and tone in his voice while he speaks which adds to his communication.  He tried to tell me about one of the nurses from the past day and he kept saying "yeah…that guy….that guy…." But having a hard time finding the word he wanted.  I suggested, "did that guy drive you crazy?" and he said "Yes - that guy drove me crazy….but it's a short drive" and laughed.   It is so great to see his sense of humor coming back.  In other instances, it seems like if you ask him a question and he can't find the answer he will give you a funny response on purpose just to get you to laugh.  More like he realizes that he doesn't have the right answer, but it's easier to say something funny.  He is also thinking through and processing a lot of overwhelming information.  He mentioned this morning that "It's hard for me to understand….I am better….but I am not better."  And we talked about how every day he makes so much progress and how is heart is getting better as well, but that we need to keep working in the hospital and then in the rehab setting to get better enough to come home.  After these conversations, he typically reminds us that he is "Ready to Work!"

And on that note, the physical therapist (PT) and occupational therapist (OT) stopped by this morning the do an assessment on my dad.  They will write up a formal report, but thought he did very well.  The first goals are just to get him independently caring for himself.  With some minimal coaching, he brushed his teeth, brushed his hair, put on a shirt.  He can walk fairly independently, and just has some balance and gait issues to work through.  I think I mentioned the other day that he can eat and drink independently and use the restroom.  I don't know all of the other parts of his assessment, but overall they seemed pleased with how much better he gets daily.  We talked with them afterwards and they feel that he seems ready to go to an intense inpatient rehabiliatation program.  Based on our research, we have found one that is about 20 miles away that has a great program with some really great results.  The average length of stay is 7-10 days and most of their patients (~75%) are discharged back home.  We are so encouraged at the thought that he is ready for this next step and that he could be home in as few as two weeks.  PRAISE GOD!

Today's big event is that my dad is getting a defibrillator implant into his chest.  Because the cause of his cardiac arrest is still unknown, this will help protect him if it were to happen again.  Dad is aware of the procedure, the doctor yesterday did a good job explaining it to him, and he has remembered all last night and today that at 2pm he will get his defibrillator.  It was explained to us as a relatively minor procedure where the defibrillator will be placed just below the surface of the skin and has leads that go into the arteries in his heart.  He will need to remain in bed for at least a few hours (maybe more….I'm not sure afterwards), but this is typically short surgery and short recovery.  He could still be ready to move on to rehabilitation as early as tomorrow…however I have learned not to depend on any promised schedule because we have planned several moves that have not happened. 

Please pray that:

·     The surgery to implant the defibrillator goes well.  Also pray that my dad will not be frustrated by the rest that he will need to take afterwards and that he will follow the instructions of the nurses and doctors.  At this point, he is not excited about any more sitting in bed.

·     Pray that he is admitted into the rehabilitation program and that the move can happen sometime in the next few days. 

·     Please pray that the pace of the progress we are seeing continues.  Every day he gets more and more of his abilities back and that is just so encouraging to both us and to him.

·     As he becomes more and more aware of things, his old worries start to come back.  He worries about work, both when he can return to work and whether he can return to work and this is a source of frustration and anxiety to him.  He has also started to ask about the cost of things and has communicated that he is worried about his finances.  Please pray that we can keep his worries at bay and that he can put these aside and keep his focus on getting himself better.

Day 19 - January 9, 2013

Sorry that this is a day late.

Yesterday was another great day for dad. The nurses that get assigned to dad all have to be males because the female nurses are not strong enough to stop my dad if he makes tries to leave the hospital. Dad had a very attentive nurse yesterday. He took dad for a lot of walks around the ICU and through the hallways. My dad was also given the all clear to eat some solid foods. Dad was very excited about this. At lunch time he was able to eat, mac and cheese with sausage cut up into it, pudding and mashed potatoes.  For dinner they gave him turkey, mashed potatoes and gravy, with peaches. He seemed to like the mac and cheese, however he really did not like the turkey and potatoes. Aunt Debbie and Uncle Tim were back with dad during dinner time. Dad took one bite and said, "This is nasty!" and he pushed the food away.

Dad had many visitors in the afternoon. Grandma and Aunt Denise stopped in with a lot of old pictures as well as a Michigan Wolverine hat and drinking glass. Dad was very moved by this. He cried and told me "these things are expensive, Denise is nice." Dad was able to spend the first part of his day with mom, Tom and Nathan. Nathan said that when he got there dad was sitting in a chair next to mom talking. As soon as he walked in dad got up, walked to him and shook his hand. Tony, Amber, Codi, Deb and Tim also stopped in for a visit. They will have to post their stories of their time with dad. I know that dad definitely gave them some good ammunition to use later.

There were others that stopped into visit but were unable to go back and see dad. Although we see a lot of progress in dad, if he gets confused or frustrated he starts to act out. I know one person who is very dear and special to my dad stopped in but was told he could not go back. This was because dad was being wrestled into bed by 4 people, he was punching, kicking, yelling and (I think) using some colorful language. Please know that we do not want your first interaction with dad to be like this. We want you to see dad when he is at his best, when he is able to go on a walk with you or to be able to sit and talk. I ask that everyone have patience with us as with my dad has we walk through this path of recovery with dad.

I was able to sit back with dad when his cardiologist came in (Dr. S.). Whitney and I were there as Dr. S explained to my dad what happened on December 22, 2012. He also explained everything that he has been through up to this point as well as explaining what the next few steps for my dad were going to be. Dr. S explained what a defibrillator was, how it was going to be put in, and how this new device could save his life. After the doctor left, dad laid in bed soaking in all in. I was not sure if he understood everything that had been told to him. After a minute or two we went for a walk around the ICU. As soon as dad sat up, he started crying and talking about the defibrillator. He understood that it was going to go into his heart and that (in his words), "this is going help so that the next event is not the end event." On our walk, dad talked about his concerns. He said his biggest concern was how much all of this was going to cost him. I assured him he had Insurance and this was going to be taken care of. The next time we saw Dr. S he was at the nurses station on the phone. Dad immediately walked up, tapped him on the shoulder and said through tears, "Thank you! Thank you for the defibrillator. You are a good man. Thank you."

Dad and I sat in the bed and I read his bible to him. I read him part of Philippians. I chose Philippians because, before my dad when into cardiac arrest he had memorized the entire book...yes not a verse or a chapter but the BOOK of Philippians. Dad said he liked hearing it and said that it sounded familiar. He asked to see his bible. I handed it to him, instead of trying to eat it like he did the day before, He opened it, flipped through the pages and said, "I like this."

We are noticing that dad is beginning to speak more fluently. His sentences are getting longer, his words still get confused. You can tell that he gets frustrated because he knows what he wants to say but it does not always come out how he wants it to.

Where do we go from here?

January 10, 2013 dad at 2:00 p.m. dad is going to get his defibrillator. His cardiologist said that dad can be discharged from the hospital as early as Friday. We were elated to hear this.


So the next step...Where in the world do we send dad? After making a few phone calls and talking to someone in Chelsea, Chantel learned that in most rehab facilities use what is called a FIM score (Functional Independence Measure), to determine where people are at when they walk in the door and they use it as a measure of progress for when they discharge people from their program. People who are most successful in the Chelsea program walk in the door with a FIM score of 69 and walk out the door with a score in the 90's. (The lowest possible score is 18 the highest is around 126). The FIM measures 18 different areas of function - 13 physical measures and 5 cognitive measures. We wanted to know where dad was on the FIM spectrum, so I requested that a FIM assessment be done with dad so that we could better judge where he is at. Once his we know dad's FIM score, we will have a better idea of what facility is going to be best for him.  This assessment will be done on January 10, 2013 right after breakfast. :)

Day 18 - January 8th

Today has been an eventful day. Today dad has an amazing nurse (Jeff). Jeff was in the military and worked primarily with soldiers who suffered from a traumatic brain injury (TBI). His experience in this particular field has helped my dad tremendously. Any time dad asks to get out of the bed, Jeff is right there to help dad up. Dad is able to walk around the room (with help...he doesn't have good balance). One time he was up and walking with Nathan and Jeff and dad took off as fast as he could. He headed straight for the door...he was making a break for it! Thankfully the door was closed, so all dad could do was pound on the window. Dad is strong and he is quickly gaining his mobility back.

Dad met with his Speech Pathologist today and was able to eat some applesauce. Dad was so excited about being able to eat something. Every few bites he would say, "I love it! I love this!" This morning dad had to be fed by someone else, by 3:00 p.m. dad was feeding himself. Praise the Lord for this progress. Not only could he feed himself, he was starting to make requests. ("I want something warm" "I'm hungry").

Dad worked with a Physical Therapist and an Occupational Therapist this morning for about 20 minutes. As soon as dad's legs flew off the side of the bed, they hit the floor and he stood up. They told dad to sit down, he said, "no, I have to go to the bathroom" and he proceeded to shuffle his feet (with assistance from PT and OT), walked over to the bathroom in the room and took care of business. Dad was so thankful that someone finally let him walk and take care of himself that he gave the PT a big hug. They then moved dad to a big recliner like chair where they strapped him in with a seat belt and let him sit up. He sat in this chair for most of the morning. Because of Jeff's experience in working with people who have a TBI, he was able to teach Nathan some things to do to work with dad to improve dad's fine/gross motor skills. Dad worked very well with Nathan for about 30 minutes. He wore himself out so much that he asked to go to sleep. Dad took about a two hour nap (without medications). :)

Dad is starting to communicate better. This morning dad looked over at Jeff (his nurse) and said, "I have some concerns I want to talk about. I am concerned that I'm never gonna get out of here." Jeff explained that dad will get out of here if he keeps working hard. Dad was very pleased to hear this. Jeff took time to read to dad from his bible. Dad really liked hearing the scripture read to him. He is still confused about a lot of things though (when dad was handed his bible, he tried to eat it; when asked what a pen was he said it was a nurse). You can tell that dad is trying so hard to remember and give the right answer. If he can't he will cover his face with hands and curl up in a ball.

After dad woke up from his nap we had a lot of family stop in for a visit. They were all so excited to see how well dad was doing. Codi, Whitney, Deb, Denise, Grandma, Tom, Amber, Chantel, Nathan...we all got to hang out with dad. Grandma was very excited because dad recognized her and called her, "mom." Dad also gave her a hug and kiss. :) Such a wonderful moment for grandma.

As the evening went on, dad started to fight to get out of bed. He was able to stay out of restraints all day and into the evening. This meant that someone needed to be with him at all times. Around 6:30 p.m. dad was trying to jump out of the bed so Jeff gave dad a shot of Adavan. Within 15 minutes dad was sleeping peacefully on his stomach. He has waken up a few times, but he has been easily redirected back to sleep.

The question still remains....what is next for dad? He is obviously no longer a Critical Care Patient. We met with our case manager several times today. She made a lot of phone calls trying to find the best Acute Rehabilitation Program for dad. Unfortunately, we discovered that due to dad's cardiac needs no one will take him until he has a defibrillator in. When we try to talk to the cardiologist on staff they tell us that dad will not qualify for a defibrillator until after they see more progress with his cognitive functioning. So...How does he get the help he needs if the two sources of help refuse to budge. For the time being, it means that dad will get moved to either the 6th or 7th floor of the hospital and he will get a lot of PT/OT and Speech time, until he meets the benchmarks the cardiologists want to see. Then he will get his defibrillator... and then he will get to go to an Acute Rehabilitation Program... and then finally dad will get to go home. :)

Day 17 - January 7, 2013

What an incredible day for my dad and all of us. When we arrived in the morning the sedation of Versed was on a drip of 10. By 9:30/10:00 a.m. the drip was at 5. By 12:00 p.m. the drip was off. Throughout the morning, dad would mumble things like, "I want to stay alive." "Good morning." "I love you." and "I have to go to the bathroom." As the sedation wore off dad's agitation only made an appearance when he had to go to the bathroom. He absolutely hates his catheter (who can blame him?)

Within 10 minutes of the Versed being turned off, dad's eyes popped open and he started talking more clearly. We met with Dr. A. he said his goal was to do everything possible to prep dad for Chelsea Acute Rehab. This included 1.) Doing Physical Therapy; 2.) Consulting with the Cardiologist; 3.) getting Physical Therapy and Occupational Therapy working with dad to see if we could get dad standing up; and 4.) get the trach out of dad's throat. He even mentioned the possibility of dad getting to drink water to see how he did. Everyone was SO incredibly excited about this news.

Around 1:30 the physical therapists came in to work with dad. Unfortunately, the nurse had given dad some morphine 10 minutes prior, so he was pretty groggy. He did a good job, followed all of their commands, however he did not talk or look at them too much. They had the PT person holding dad up, and the OT person worked with dad to grip things and move his hands and arms. Dad was able to pinch, grip, and move his arms over his head. Because the PT was holding dad back, he pinched her hand and winked at the OT who was working with him. She asked if dad has a sense of humor, we explained that dad is a very sarcastic and funny. They thought he was trying to joke with them because he wanted her to let go so he could get up and walk. Next, the PT person moved in front of dad to work with him on his legs. He did a good job moving his feet and legs. He tried pinching her with his feet...again he thought he was being funny. It is good to see some of dad's personality come out. When dad had to be laid back in the bed Nathan had to hold him down as they put the restraints back on.  Dad went to in an angry temper tantrum. He told Nathan, "You're not my buddy. Not my friend. I'm mad at you."

The PT wore dad out pretty good and soon he was sleeping on his own (without medication). When dad woke up he felt VERY bad for being mean to Nathan. He looked at Nathan and started saying, "you're my buddy. You're my best buddy." Nathan asked dad if he remembered what he said to Nathan before his nap. Dad instantly said "yes" and started crying. He repeatedly said, "I love you. You're my best friend." I asked dad if he remembered my name. He called me Aubraille. I told him I was his daughter and he instantly started crying and saying, "My daughter, Aubraille. My daughter Aubraille." I corrected dad and told him I was his favorite daughter, to which he responded with lots of laughter. Glad to see glimmers of my dad return. Today has been a great day (and it's only 4:00 p.m.)

UPDATE BY CHANTEL:  All of us kids were able to stop by for a bit in the evening.  Dad was so much better than I had seen him when he was awake on Saturday.  When I first walked in he got emotional and kept saying "I want to live, I want to live."  We assured him that each day he is getting better and better.  He did not have to be restrained and was able to sit in the bed without trying to get out all of the time.  The trach was out of his throat.  He had no oxygen or other respiratory help and still had really good O2 saturation.

As the night wore on he got a little more frustrated and upset as I think he starts realizing his situation more.  He really wants to be more independent, have the ability to get out of the bed and tae care of some things himself.  When we tell him he can't he gets really frustrated asking "Why?!?  Is it really so hard to let me get out of bed?!?"  At that point in the night, Nathan was able to explain to him that he couldn't today because he was still hooked up to some lines and that we didn't want him to do any damage to himself, but that tomorrow in the morning they would let him get out of the bed.  He would sigh loudly and lean back and say "Fine!  Tomorrow...10am!" and we would be okay for a little while.  It was nice to see that we could rationalize with him a little bit.  We were also able to redirect him when he would get upset as well, which we couldn't do earlier. At one point I suggested that we talk about Maylin (his granddaughter), and reminded him that she is such a cutie-pie and got her picture for him to see.  He took her picture out of my hands and turned over and said "Yeah, Maylin, she is a cutie pie....a real cutie pie."  I suggested that we should take her to the beach in South Haven this summer and he liked that idea.  I suggested he could build her a big sand castle, that she would really like that and he said "Yeah - A HUGE ONE!"  Then we talked about watching the sailboats and sitting on Uncle Tim's porch.  He thought all of those things sounded good.

After I left, it sounds like he may have proceeded to get a little worse, and take out his anger on the people around him.  I hear that he got a few good knocks in on Nate, and tried to with Aubrey, Uncle Tim, and the nurses as well.  Based on what I have read in the last few weeks, all of these are normal stages and emotions that these patients work through...both being sentimental and agitated/aggressive. 

Day 16 - January 6, 2013

Sedated....all day long....

Today when the family initially got into the hospital, Dad was still on a relatively high dose of Versed which is being used to sedate him overnight.  When we had left last night, we were told to expect that they would start to wean him off again between 6 and 8am and that we could expect another day similar to yesterday with dad off from almost all sedatives.  Instead, we were told that plans had changed and that he needed a day to rest. 

We were pretty upset and frustrated and confused at the change in plans.  It seems pretty convenient that when short staffed, they have a "day to rest" planned for my dad.  However, in talking further with them, they talk about keeping him safe, they don't want him to fall out of bed, or stress his body or heart too much.  We started to come around and figured that we could just get through the day...just one more day of this....then tomorrow the light at the end of the tunnel.  The doctors had decided Friday that he was ready to move to a rehab facility as soon as the weekend is done and the paperwork gets processed.  Maybe we could live with a day of rest.

Around noon, Aubrey asked to talk with our case worker just to make sure that everything still looked good for going to the rehab center tomorrow.  The case workers said that because dad is back on the IV sedation, so long as he is still on the IV sedation, there is no way that the rehab will accept him into the program.  ok....deep breath....  We go talk to the nurse and ask if they will more seriously think about backing off the sedation because we do not want to risk our chance to move dad forward.  She agreed to talk with the doctor and VERY SLOWLY, they cut back on the sedation and increased a different medication to help ease his agitation.  However, by 6:30pm tonight when we left, he was still sleeping and on a pretty healthy dose of the IV sedation.  They had already begun to discuss that he would likely not be ready to move like the original plan had been. 

So another day of feeling like we took at step back.  We were looking forward to moving dad over to the Rehab Facility in hopes that they have more experience dealing with patients during this agitated phase of recovery and the right resources to help them safely progress.  But it seems like that is slipping away.  It feels terrible. 

And tomorrow we have another new doctor beginning his 7 days in the CCU, so we will work to get familiar with him and his philosophy and see what strategy he develops (hopefully there is a strategy).  With Dr. M, it seems like there was always a strategy....each day it was "lets try this" or "lets try that."  All of our future plans (like the planned move the CareLink and the planned move to Rehab) were developed by Dr. M, and seem to be dismantled by Dr. P.  So tomorrow we will meet Dr. A and just pray that he has some fresh ideas and/or will continue to move forward in a similar fashion to Dr. M. 

Specific prayer requests for today:

• Pray that my dad can come off from the sedation tomorrow without the same level of agitation that we have seen the past few days.
• Pray that the Rehab Facility will understand his case and that they will be ready, willing, and and able to meet him where he is at and actively work to move him forward.  
• Pray for good care and fresh ideas/strategies as we meet and begin to work with Dr. A tomorrow.
• Pray that as a family we can continue to be with my dad and advocate for him, and balance our lives outside of the hospital as all of us have to return to work this coming week.  

Day 15 - January 5, 2013

Wow - its hard to believe that we are at day 15....it feels like we have been at the hospital FOREVER.  And then in other moments, we feel so happy with the progress made in what is actually a relatively short period of time.

Today was the second day of having my dad completely off from all sedation during the day.  As Aubrey mentioned yesterday, dad also has a voicebox in this trach now which allows him to talk.  Today seemed a little better than yesterday, but only in subtle ways. 

Yesterday, dad seemed to repeat a cycle every 2-3 minutes. He would (i) rest back, (ii) open his eyes really wide, try to sit bolt upright, then get agitated and fight when we pushed him back down in the bed, and (iii) then would stay aware and focused for 30-45 seconds before closing his eyes and "dozing off" for a another 30-45 seconds...then repeat....then repeat...then repeat.  Today, I would say that he seemed a just slightly less cyclical and the time between trying to sit up seemed a little further apart.

Yesterday, dad really wanted to get out of bed, and that still has not changed in the slightest.  He is so focused on getting out of the bed, it is really hard to distract him towards anything else.  However, today he has tried new strategies for trying to get out of bed, including gaining leverage with his legs whenever possible and/or getting someone to come in close for a hug and then leveraging their body to pull himself up out of the bed.  If we could trust that he wouldn't bolt for the door, we could maybe try to get him up....but honestly I think there is no guarantee that he wouldn't really wind up hurt if we tried to early because he is very strong and he is VERY determined to get out.

Today was actually the first time that I got some extended time back in his room with him.  He swung through a full range of emotions in the hour or two I had with him.  He started by feeling really upset that I would not take the restraints off from him (I heard "Chantel - I am really mad at you" several times), to "I love you" and  "I have a good life", to some funny requests like "I want to see my file", to just in general being frustrated and wanting to be out of his current situation entirely.  Based on our discussions with the neurologist and with several others in the medical field, it seems this response is very typical of someone waking up in the hospital after this type of event.  

One other problem that we have encountered is that he seem very frightened to sleep and fights it with his whole being.  This is just me stretching and filling in what I imagine could be going through his mind.  But he wakes up and is told gently about his accident and that he has missed the last 12-13 days of his life.  HOW TERRIFYING.  So now, we try to convince him that it is safe to go to sleep.  We tell him "We will wake you up tomorrow and everything will be fine" and there is fear and distrust.  He tells us he trusts us, but in his mind, how can he be sure he isn't going to sleep through another week or two (or ever)?  So the doctors and nurses use some sedation to try to force him to relax and sleep at nighttime and he fights.  Tonight, it took 2 times the amount of sedation that it took last night to get him to sleep and was still a 3+ hour long process.  As soon as he starts to feel the foggy/relaxing effects of the sedation, he seems to push all the harder to stay awake.

So overall, another positive day.  Its nice to see my dad coming back around, even if it is slow. 
As far as specific prayer requests for today:

• Pray that my dad will get a good restful night of sleep tonight and that going forward he will feel at peace about going to sleep both for naps during the day and for sleeping at night.
• Pray that he will not be as agitated, and will start to understand the reasons/logic behind why he cannot get out of bed and be safe at this point in his recovery.  That he needs to build a trust and follow the instructions of the nurses.
• Pray for a smooth transition from the critical care unit to the inpatient rehab facility Ilikely Monday).  Also pray that my dad will be able to actively participate in the therapies that they plan for him so that he can continue to qualify and benefit from their care.
• Pray that in the coming days/weeks/months that we all will approach each day, as a wonderful gift of another day which none of us have been guaranteed.  Understandably, this road could be incredibly frustrating, but I trust that God is greater and can make his burden light and bring him peace.

Day 14 - January 4, 2013

(Brought to you by Aubrey)

What a crazy exciting day.

I walked into the waiting room, a Volunteer approached me and said, "are you with the McEldowney family? The doctor needs to see you immediately." I ran back to my dads room and he was sitting up in a chair. He wasn't in the bed. He was not hooked up to any machines. He was not sedated. I was in shock. I was SO happy! Dr. M explained that he was going for a radical approach today. He was keeping dad off from all sedation for the entire day to see what would happen.

It has been exciting to see dads progress. He is following more complex commands. While in the chair he could follow directions from the doctor ("Clarence, readjust yourself using the arm rests.") dad would do just that. He would plant his feet, grab the arms of the chair, and lift himself up. As dad became more aware he become more agitated and more aggressive. The plan was to keep dad from being too stimulated to see if this would help with the aggression. This meant that the doctor restricted who was allowed to see dad and how many of us were allowed to go back.

Around 12:30 p.m. we met as a family with the doctor, supervising RN, and a representative of patient services to address our concerns for my dad (about constantly being sedated, nursing care, etc). The meeting went well. Dr. M was very excited to see what today would hold for my dad.

As the day progressed so did my dad. He continued to try and talk and communicate with us. He has a trach in still which means he can't talk. We believed that this was adding to his agitation. At the meeting we asked about doing a voice box in the trach. The doctor agreed. At around 1:30 p.m. Dr. M ran out to the lounge and told me to come quick. When I walked back to his room, he was surrounded by two doctors, two techs, three nurses, someone I didn't know and myself. Thats when I heard it. I heard my dad speak for the first time in 14 days!! Dad lifted his legs, pointed at his feet and said, "get these off" (they had his legs restrained because dad tried jumping out of the bed). They agreed to do this. As soon as they took the restraints off dad made a run for it! He immediately threw his legs off the bed and tried pushing himself off, thankfully there were 5 or 6 people there to stop him. He was not happy. When asked why he was aggravated he said, "too much. Too much, too much extra." There were too many people in the room. We have a very wonderful Tech, ML, who sat and worked with dad all day, sat him back and told him he was not allowed to get out of bed. Dad looked at her and said very forcefully, "I dont want you! I don't want you!" despite my dad's sudden dislike of her, he listened very well to her and did lay down and did relax. We all exited the room and ML was able to get my dad to sleep (without any medication).

Throughout the day, we continued to see improvement in my dad. He understood he was in a hospital (he thought he was at U of M), he recognized all of us. (Calling Tom: Tommy). When Nathan went back ML asked dad, "do you know who this is? Dad responded by saying, "yup, he's my best friend." Dad rested a minute and looked up at Nathan and said, "I love you." What a joyous moment!

Earlier in the day dad kept saying that he wanted to die, he would occasional swear at the nurses, but as the day went on his attitude started to change. He started saying that he didn't want to die and kept saying, "it's a good life." He stopped telling the nurses to go away and instead started kissing their hands and telling them, "I love you."

The goal for tonight is to allow dad to get a good nights sleep (he needs REM sleep). Tomorrow he will be awake, unmedicated and we will see what progress he makes after getting a good nights sleep. 

Oh - and due to so much progress, Dr. M and the neurologist (Dr. R) agreed that he should be transferred to an acute rehabilitation center for assessment and occupational, physical and other therapies as required to get him as far as possible towards coming home.  Since this paperwork was started late in the day and because it was a Friday, this move will probably not happen until Monday....but it feels so good to have a plan. 

Day 13 - January 3, 2013

(Today is brought to you by Aubrey)

Today has been a very difficult day. We came in this morning with the expectation that dad would be awake when we got here. When we left last night the plan with the doctor was that dad was going to be put on a day/night schedule. (off the sedatives during the day and on them at night to help him sleep).

Not only was dad not awake he was completely knocked out by sedatives. When asked why, the nurse said that she did not think that taking dad off sedatives was in dads best interest. She said that he was too active and she was concerned about his safety. I disagreed. I felt like she did not want to deal with a difficult patient so she decided to chemically restrain my dad. This led to a very aggressive conversation with the nurse and the doctor. Initially they agreed to decrease sedation, and they did. However the second my dad started to move they would increase the sedation again. Around 2:00 p.m. Dad was almost weaned off the sedative completely. They had to clean his trach then they were going to take him off all sedation. When I went back to see my dad not only had hey not taken him off the sedation, the had quadrupled his dose. When asked why, the nurse replied that he got agitated and that she was concerned for his safety. I struggled with trusting her decision to sedate my dad so much. She would not budge and would not answer my questions.

At that point we got the supervising RN and the patient services manager in to discuss my dad's care. The discussion did not go well. I was mad, i dont feel that they really listened, and they talked to me like I was a child. The meeting ended with the agreement to meet with the head of the nurses, doctors, and family tomorrow. In the mean time the plan was to keep my dad snowed with drugs. I was so mad I walked up and down stairs in the stairwell. I ended up walking up and down about 21 floors. I am sure that my legs will be very sore tomorrow.

Despite the fact that they heavily sedated by dad, he was still responding. He would still follow some commands, he could still tell the nurse he had to go to the bathroom. Tomorrow is a new day.

I am reminded of Mark chapter 4:27-28 - The Parable of the Growing Seed.

"Night and day, whether he sleeps or gets up, the seed sprouts and grows, though he does not know how. All by itself the soil produces grain—first the stalk, then the head, then the full kernel in the head."

I trust that even though I can't see dads progress, God is working behind the scenes.

Day 12 - January 2, 2013

(Today is brought to you by Aubrey)

Today was a long day. The family showed up to the hospital around 8:00 a.m. When we showed up dad was still very heavily sedated. They had reduced the sedation by half, which was good, but he was still very out of it. Nathan, Amber and I took turns back in dad's room to help keep him calm as the sedation wears off.

We could tell that dad was less and less sedated and more and more alert by his strength and just by simply watching him. In spending the day by his side we could see the very subtle changes that all pointed to my dad becoming more alert.  When we first came in, his mouth would just hang open and he did not really move his facial muscles too much. By lunch time we had noticed that he was starting to move his jaw, his tongue, and his eyebrows. Dad's eyes slowly came back to us as well. When he first opened his eyes they were glassy and just stared off, not focusing on anything. As the afternoon went by, dad started turning his head toward who was talking and he started focusing his eyes around him too.

We took turns talking to dad, telling him that he was in the hospital that he was okay and that he was being taken care of. Dad was starting to lock eyes with us when we talked. Dad did a lot of moving back and forth trying to get comfortable. Our nurse kept telling Nathan and I that dad could not hear us. She kept telling us that we were reading too much into dad's movements (to this I responded by leaning in and whispering into dad's ear: "It's okay dad, I know you can hear me. I know you are in there. Just ignore scrooge over there.")

It was around 4:00 p.m. when Nathan noticed that the neurologist walk by. Nathan ran out into the hall and asked him to come in and look at dad. Dr. R started talking to dad. Dad started by moving his eyes and head toward the doctor. The doctor was amazed. He moved up next to dad and asked him to squeeze his hand...AND HE DID! Dr. R asked dad to squeeze his left hand...AND HE DID! Dr. R looked at my dad and said, "Clarence can you stick out your tongue?" Dad turned his head looked Dr. R in the face and nodded his head yes! I laughed out loud and started crying! Dr. R proceeded to tell dad that he needed him to actually stick his tongue out...AND HE DID! The nurse in the room said that dad was probably not actually following the doctor's commands. So we looked at dad, he looked at us and stuck his tongue out as far as he could. (The nurse froze...and didn't move for a while). Dad proceeded to move his eyes, hands, and legs on command. Next, dad started moving his mouth. Nathan said, "I think Clarence is trying to talk." Dr. R said, "I think he's just moving, I don't think he's talking." Nathan started talking to dad again, telling him he was in the hospital and that he had been here a few days. My dad looked up at Nathan and mouthed, "How long?" we all froze and Nathan asked dad, "Can you say that again?" Again, dad looked up at Nathan and said, "How long?"

The doctor looked at me, shocked. He simply said, "He really is trying to communicate. I would not have believed you if I had not seen it with my own eyes."

Praise the Lord!!

Once dad started to realize what was going on, his blood pressure and heart rate went through the roof. We shut the lights off and only let one or two people back there at a time. They started him on a new sedative to help him sleep through the night.

Sitting with dad was physically exhausting. When he gets agitated we are having to literally hold him down. Those of you who know my dad know how strong he is. Once the sedation wore off, my dad was fighting with all of his might. Nathan was the only one who could restrain my dad. Even the nurses could not hold him down. Nathan ended up wrestling my dad for six or seven hours straight with only one or two breaks for the nurses to care for my dad.

Today was an amazing day. We laughed, cried, danced. Today was a gift from God. The glory of today goes to God. He has healed my father. We still have a long road of recovery a head of us, but we know that dad is there and that he is fighting with all of his might.

Day 11 - January 1, 2013

(Today is brought to you by Aubrey)

I am writing this a day late, so I hope that I do not leave out any of the exciting details that yesterday brought us. When we arrived in the morning, dad was wide awake. His eyes were open, he was moving all over the place and was fighting to sit up. We were surprised to see dad so active, because he tried pulling his trach out the night before.

Nathan and I were in the room with dad trying to keep him calm. Angie, his nurse said that she was surprised at how well he was responding to us (because he had done nothing but fight her all morning). She said that she was seeing some "intentional movements" from dad. When asked to clarify, she said that dad has been putting his hands and arms up and pushing against her when she tries to adjust him or get him to lay down. She said that his movements are not "accidental" but that he really did not want to be bothered by her.

Dad's eyes were very alert. He would look to the door when someone came in, he would move his head and his eyes toward us when we spoke with him. I was on dad's left side holding his hands. He started to squeeze pretty hard. I told him that this made me happy to see him moving so much. Dad turned his head, moved his eyes and looked right me. I smiled and said, "Dad, if you can hear me I would love for you to squeeze my hand." AND HE DID! I was so excited! I asked dad again, "Dad, can you squeeze my hand so that I know that the last squeeze was not an accident?" He looked me square in the face and squeezed again!  He did this a total of three or four times!!  I cannot express my excitement at this progress!

Nathan grabbed dad's hand and Dad responded by shaking Nathan's hand. Nathan was shocked, "Did Clarence really just shake my hand?" There were many times that dad continued to try to sit up. Nathan had to be forceful with dad and push his shoulder and head down. How did dad respond? He grabbed Nathan's arm and pushed Nathan off of him. Even in dad's semi-sedated state he was too strong for Nathan.

Because he was so active the doctor ordered that my dad be sedated. We were frustrated with this but ultimately we need to make sure that dad is safe. The doctor assured us that this was the only option to keep the trach and dad safe.

Later in the day, Uncle Tim, Aunt Deb, Whitney and Kyle came in to see dad. The sedation had worn off and dad was awake again. Again, dad started following commands "Clarence, squeeze my hand." He did this for several people. When Kyle walked in, I am told that dad looked at him and shook Kyle's hand.

In the midst of the celebration there were some struggles with the nurses and the doctors. We were so excited to see dad awake and we desperately want to see dad make more progress, however the nurses were ordered to keep dad still. Which meant that they had put him on a sedative that we had been fighting to keep him off from. The purpose of this was to keep dad from getting so agitated that he would not hurt himself. We appreciate that they want to keep dad safe BUT at the same time, it felt like we were going backwards in his progress.

I am excited to see dad wake up and I am excited to see what the next day holds.