Update from the Clinic – Homeward Bound

I am relaunching the blog with a series of posts that were originally published in 2014.  Please scroll to the bottom if you would like to start with the first post.

August 18, 2014

I am on my way home today.  What an adventure this has been so far.

Friday was my last day of “official” therapy.  On Sunday, we did a family walk through with Mary Ann so that she could see how to help me on steps and that kind of stuff.  Thursday was harder because I took some time with my therapy team to talk about what we had accomplished in just 5 weeks.  I thanked them and rolled back to my room and cried.  I get teary just writing this.  But, I need to repeat it for myself and for all of you who have been praying for me.  God has worked a miracle in my life.

After a false start in rehab on July 1, I re-entered rehab on July 14.  At that point, I had been immobile for five weeks.  It was a chore for me to lift my arm over my head and couldn’t move my legs to change position or get out of bed.  The same people who I mentioned in an earlier post who told me what percentage of muscle mass I lost for each day I was incapacitated also told me how long it takes to come back.  That number is even more depressing, it’s like a week of therapy for every day of incapacity.  By that count, it would be Groundhog’s day before I was back to full activity.  But, I had a secret weapon; you were praying for me and we have a God who loves to work miracles.

My entire first week in therapy I spent just showing my body how to stand again.  We began with this frame that I sat in.  It braced my knees and my chest in the front and the seat pumped me into a standing position.  My body began to experience gravity through my legs again and my muscles begrudgingly cooperated. I would “stand” for 5 or 10 minutes at a time and do “exercises” like: tighten my knees 10 times, tighten my bottom 10 times, tighten my tummy 10 times, and pull my shoulder blades back 10 times.  The goal was to rebuild my core strength.  I’d rest a minute (because that was tiring) and we would do it again.  That was the first 3 or 4 days,

By Friday, we tried a different kind of walker called an Evo walker.  Imagine an speaker’s podium that is nearly shoulder high with a place cut out for my chest.  It has padding for my elbows and a couple handles in the front.  Basically, it is designed for me to support my weight with my upper arms and shoulders.  I began doing my exercises in the Evo walker and that Friday I took my first steps, about 15 feet.  Hey, zero to 15 in a week is something.  But, it still seemed to me that it would be Christmas before I’d be walking.

The next week, we started with the Evo walker and decided to move to a standard walker because that is what I would be using at home.  It took two people to help me stand up from my wheelchair and I walked about 10 feet the first time.  One person was beside me holding a safety belt they put around my waist, someone was on the other side just in case and a third person followed with the wheelchair so I could sit when I got tired.  That week, I maxed out at about 30 feet with breaks, more shuffling than walking, but it was progress.

The next two weeks were more of the same.  I continued to make incremental progress and the strengthening exercises started to pay off.  We began working on going up steps because I have 5 steps to the main floor from our entryway and my assist went from three people to one who walked beside me with her hand on the safety belt.  By the fourth week, I could do a 100-foot lap around the therapy room, take a break and do it again.  We would leave the wheelchair in place and I would walk back to it.  I could handle 4-inch steps (ours at home are 6 inches) and I needed less help getting from the wheelchair to the walker.

I was initially scheduled to be released on August 4 and with all the health problems I had my first time in rehab, I developed C-Diff and had  to be moved off the floor for a week. they extended it until August 18th.  On the 4th, I could only have been released to a nursing facility because  I couldn’t function at home.  We were able to convince the insurance company that a couple more weeks in acute rehab would save me some unknown number of weeks at a skilled nursing facility where I might get therapy once a day and not the quality I was getting at the clinic.  It turned out to be the right thing.

Last week we saw the prayer and work come together for results that I couldn’t imagine a month ago.  By the end of the week,  I walked 1,200 feet in 5 walks.  I can climb 5 6-inch steps using a handrail and a cane, and I can stand up from the wheelchair to a walker without help.  I can also just stand up and balance not holding on to a walker or any other support.  When we get home today, I plan to wheel into the house and walk up our entryway steps.

As I have freely admitted in an earlier post, I have not made this progress because I was in great physical condition before all this started, and it is not all because of the team of people who I have worked with (though they are great and I can never thank them enough).  I have to attribute the success to your prayers and God’s response.  My prayer going into this was that God would glorify himself in the process.  My hope and prayer was that he would choose to glorify himself through a quick recovery, but I knew that I needed to be willing to walk (or wheel) whatever path he had for me.  I know that it will be a little while before I am walking without assistance and driving.  But, if you agree to keep praying, I agree to keep working, and God has already agreed that when two or more are gathered in his name he will hear and respond.  So, let’s keep it going.  The next update will be from Cincinnati.  I can’t wait to tell you what God has done after I have been home for a week.  I am praying for continued independence in walking, the next move for me is to walk with a cane, and I’d like to start driving again.  (It will be a few weeks at least before I drive and I promise to warn the local readers when I start.)

If you know people who have trouble with the whole “God answers prayer” thing, share this story with them.  Even better, get them in touch with me and Mary Ann so we can tell the stories I haven’t had time to write.  Mary Ann’s week when I was in the “coma” are amazing and when she has time to write I’m going to turn the blog over to her for a while.  God used my condition to allow her to share her faith with people who she never could have talked to.

If you have been reading along, I plan to do one more “theological” post and then switch to talking for a while about how all this theology worked out in practice when our lives blew up in June.  While it is important that we lay a firm foundation in what we believe, the test of the foundation is the life we are able to build on it.

Thanks again for your prayers and support.  This will be a big week for us.  Keep praying, keep reading, and I’ll let you know what happens.

Do you have an old walker around the house?  For folks in the Cincinnati area, I’d like to borrow two walkers to add to the one I am buying so that I can have a walker on each level.  Let me know if you have one and can drop it off or if we can pick it up.

These are the heroes that helped me walk. From left to right: Anna (OT), Derrick (keeps the place running and is the Chief Encourager), me, and Kaitlin (PT) who never gave up hope that I would walk again.

therapy-team

Update from the Clinic – Countdown to Home

I am relaunching the blog with a series of posts that were originally published in 2014.  Please scroll to the bottom to start with the first post.

August 10, 2014

I have a release date, August 18, 2014.  It will have been just over two months since I was admitted.  For those of you in the Cincinnati area who are looking for ways to help us with the transition, I will have some ideas at the end of this post.

This past week has been very productive.  I am now walking in 50 and 100 foot loops, leaving my wheelchair parked and working my way back to it.  That is a real-world exercise in how I will be doing things at home.  I have started working on stairs.   I need to get up 5 7-inch steps to get into our house.  That will be my first challenge when I get home.

Mary Ann and  I have gone over my daily routine with my OT and PT and we have worked out how showers will work and how I can fix my meals during the day.  We will set up a temporary “office” for me to keep me busy and transition back to work while we move my full office upstairs.  We are renting a chair lift to get me from our main floor to our bedroom – bathroom floor until I can master the steps.  I am very thankful to have this last week in therapy to keep working on my skills and develop the strength in my legs and arms.  Just last week we thought I would need to transition into a skilled nursing facility when I was released from the Clinic and it is great that I will be able to go straight home.  Thank you to all of the folks who have been praying for clarity for us in making that decision.

Once home, we will need to flip the house upside down to make it work for me,  that is where we can use help.  Our family room will be moved to our living room and my office will be moved to our family room.  We will be selling some furniture over the next couple weeks to help make room for stuff.  If you want to help, there are two main functions.  The first is the heavy lifting of moving furniture from room to room and to and from the basement.  The second is in moving some cable and internet connections for my office.  We are going to try to coordinate the effort through church (Montgomery Community Church) and if you want to help, let me know and I will get you in touch with the right people.

Once I am home, I look forward to getting re-integrated into life.  We aren’t sure what that process looks like.  It will depend a little on how quickly I master the steps into the house and getting into the car.  But, my goal is to be moving around, going to church, out to eat, etc. by the first of September.  Things continue to happen quickly, so that seems like a reachable goal.

The prayer requests have not changed for this week.  Please continue to pray for physical, spiritual and emotional strength for me and for our family.  I would like to conquer the entryway steps and develop a good daily routine.  Mary Ann starts school the week I get home and will be balancing my return home with her return to work.  I will need patience in working out all the details of this transition.  I have waited a long time to be at this point and it will be hard when all the stuff I’d like to get done won’t be done in a week.

Thanks for reading and thanks for staying with us.  If all goes as planned, the next update will be the last one from the Cleveland Clinic.

 

 

Update from the Clinic

I am relaunching the blog with a series of posts originally written in 2014.  You can scroll to the bottom to start reading with the first post.

August 8, 2014

Learning to walk the second time is harder than learning to walk the first time.  There’s an observation I never expected to make.  I want to give you an update on the therapy progress to let you know how I am doing and how to pray for me.

The folks here have given us various numbers for how much muscle mass a person loses each day they are incapacitated.  It’s a really big number and if I hadn’t experienced it, I wouldn’t believe it.  Before this began, I was not “athletic” but I was active and could do all that I needed to do.  After nearly a week sedated and another couple weeks immobile, I had little muscle left.  It was deceptive, because during that time my body collected fluid.  So, for example, my calves were larger than before but it was all water weight.  When we finally got the water off, my calves are about the size my arms used to be and my arms are thin.   Like those pictures you have seen of the big dinosaurs and little teeny arms.  When I was officially “released” to the therapy floor, I couldn’t role, slide, or reposition myself in my wheelchair and could barely lift my arms over my head.  I have a 24 ounce cup of water by my bed and it took two hands to lift it.  All-in-all, not a pretty picture.

The challenge for the therapy team was to take what was left of me and help me build the strength to walk again.  To be honest, I thought it would be impossible.  But, I kept looking at the poster from Megan in my room (see the first post in this series) that says “I can do all things through Christ who gives me strength” and I knew it would happen.  I didn’t know what God had in store, but I believed it included walking.

I spent a few days in therapy and contracted C-Diff (a nasty bug that causes diarrhea) and they needed to move me off the floor for a week.  When I came back, I really couldn’t walk at all.  The first week in therapy I used a standing frame that braced my knees and hoisted me into a standing position.  Once standing, I would do some simple exercises to strengthen my knees and core muscles.  By the end of the week, I was able to stand at an Evo Walker that allowed me to stand, support myself with my elbows and put weight on my knees.

The Evo Walker allowed me to take my first steps.  It wasn’t pretty, but it was technically walking.  I could also use it to stand for my strengthening exercises.  By last week, we decided to switch to a standard rolling walker because that is what I will use as a transition device until I am walking independently.  It was a huge challenge to go 15 feet with one person on each side of me and someone else following with the wheelchair.  By last Friday, I could walk about 50 feet with standing breaks.  Again, not pretty, but making progress.

I also fought off another round of C-Diff last week that started over the weekend and continued through Wednesday when the medication began to kick in.  But, I didn’t want to leave the rehabilitation floor this time and just worked through it.  Every time I stood up I felt like I would mess my pants.  I have come to appreciate Depends (that makes me sound old) but they got me over the fear of embarrassing myself in therapy.

This week has gotten off to a good start.  The effects of the C-Diff have gone away.  Yesterday morning was business as usual knocking out a few 30 foot walks and wondering when I would break the barrier.  Yesterday afternoon, it happened.  I was able to walk about 100 feet with only standing breaks.  I did it twice.  Today, I walked a total of 300 feet in my two sessions.  I am thankful.

I also have begun working on steps.  This afternoon, I was able to lift my foot onto a 2 inch step and stand on it.  I need to graduate to 4 inch steps before I go home.

This short summary squeezes a few weeks into a few paragraphs.  While the outward signs are physical, there have been spiritual battles we have fought in prayer and spiritual insights from going through this process.   I don’t know why God has ordained this for me and I may never know.  What I know is that it is by His grace I am alive and by His grace I am walking again.  It gives a whole new meaning to the phrase “walking in Christ.”  We can say that our life belongs to God and we have a general idea of what that means.  For me, everything I have done from the moment of my heart attack is done using time that God has given me.  If I had any questions before about who my life belonged to, I don’t now.

Please pray for my continued health and for the strength to build in my legs and arms.  Pray that I can maintain an attitude of thankfulness in all circumstances and that the people here will see my faith and recognize that this is not a “me thing” but it is a God thing.

Thanks for reading along with me.  If you would like to receive an e-mail when there is a new post, please subscribe to the blog by entering your e-mail along the right column.  If you want to just bookmark it, make sure you bookmark the main page: thedigitaldisciple.net so that you always go to the newest posts.

The Digital Disciple Resurrected – Literally- and Ready to Write Again

I am relaunching the blog with a series of posts that were originally written in 2014.

IMG_0892

August 8, 2014

It has been months since I have posted anything of real substance here on the blog.  I have found that the charts and Kobo troubleshooting post are generating a lot of traffic (about 20,000 views in July) and the site just grows.  I will update the charts in a month or so with the fall line-up of tablets and smartphones.  All-in-all the site is accomplishing what I had in mind on the technology front.

That said, with recent events that have happened to me, I think that it is time to begin working on the real “blogging” part of the blog, talk about what has happened to me and sharing the various insights I have gained and am gaining as a result.  This will not be technology related, but will be the “disciple” part of The Digital Disciple.  I hope that, in time, the information in these posts  will be as helpful as the technology information found here.

I will start this “reboot” with some background information that will put the posts that follow in context.  About 4 years ago, I was diagnosed with a rare auto-immune disease called Relapsing Polychondritis.  The disease treats a body’s cartilage as a foreign substance and attacks it.  We have cartilage all through our bodies and RP usually attacks the ears and nose causing them to become inflamed and painful.  My RP has attacked the cartilage in my bronchus causing it to be inflamed and, when I have a flare-up, making it difficult to breathe.  I treat it with steroids and immune suppressants and live a normal life most of the time.  My particular manifestation is rare enough that the pulmonology department at the Cleveland Clinic has only about 10 patients with my “version” of the disease.

Around June 9, [2014] I began the early signs of a flare-up and I began to increase my medications to fight it off.  But, this one came on much more quickly and the usual approach did not work.  My pulmonologist later told me the he had seen all 10 of his pulmonology RP patients in June and he thinks that the flare-ups were triggered by some airborne virus that swept across the mid-west.  Whatever the cause, I was in the hospital in Cincinnati in a matter of days.  This time, my breathing was so bad that I was put on a ventilator, sedated, and transported by helicopter to the Cleveland Clinic after waiting 36 hours for a bed to open in Cleveland.  No, I can’t imagine what that will cost and you use can use PayPal to make contributions to the helicopter fund.

When I finally made it to Cleveland and was admitted to ICU, we thought the worst was over. I was still on the ventilator, sedated, and they were struggling to get the inflammation under control.  My wife was walking out of my room so the doctor could put in an arterial line and my heart stopped under the pressure from the breathing difficulties.  I was dead for about 30 minutes while the “Code Blue” crew tried to revive me.  Obviously, because I am writing this, they were successful.  During that time, Mary Ann was on the phone with our daughters in Cincinnati praying that God would spare me.  God answered and the miracles that followed will be part of future posts.

After getting my heart beating, they were concerned about preventing or limiting any brain damage caused by the lack of oxygen.  So, I was put into a coma and “iced.”  I hate being cold and thankfully have no memories of that experience.  They took my body temperature to 36° and questioned whether they should make it colder.  The doctors were not optimistic and believed that I would suffer long-term brain damage, perhaps never recovering.  A week later I was responding to my name and answering simple “yes/no” questions by nodding: Do you know who you are?  Do you know where you are?  I couldn’t talk because of the tube, but could use a chart with pictures to make simple requests and respond to questions.

Finally, they removed the tube about two weeks after they put it in.  I was able to breathe on my own and I could talk again.  After two weeks of being hydrated with an IV, I ate an entire cup of crushed ice.  It may have been the best meal I ever had.

I am pleased to report that God protected my brain and there appears to be no long-term damage.  In Occupational Therapy, I worked a 30+ pin jumping board down to one pin.  I don’t really like those kinds of games, but I had prayed earlier that day for confirmation that there was no lingering brain damage and I’ll take that as the answer.  The OT said she had never seen anyone solve it before.

Folks who cared for me in ICU have dropped by just to chat and confirm for themselves that I have really come out of the coma with no lasting psychological impact.  Folks who believe in God rejoice with us and folks who don’t just shake their heads and don’t really know what to say.  I suppose they think I beat the odds.  But, when God steps in, the odds are irrelevant.  They see the poster in my room from my daughter and grandsons that says in part “I can do all things through Christ who gives me strength.”  Philippians 4:13.  They may not believe it, but I want to give credit to the right person.  This is not about anything that I have done, but about what God is doing through these experiences.

I am now in acute rehab learning to walk again.  My body was weakened by being paralyzed and bed-ridden for weeks.  If you are reading this and inclined to pray for me, pray for strength for my legs and that I will learn to walk quickly.  Walking is the last hurdle to my returning home to my house and family.

This has been about 1,000 words of background.  I want to talk in future posts about what I have learned and am learning from this experience.  I hope you will read along and pass the site on to people you know who may be facing similar troubles.  Please feel free to leave questions or comments.

[The get well note pictured at the top of this post now hangs above my desk]