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. :)