Taking up where I left off. . .

The C 3/4 spine surgery was in December 2011, and he came home from the nursing facility in January 2012.  He had been in the hospital 16 days, and at the facility for 21.  So in January, I brought him home, and the fun really started.

The physical therapy he received enabled him to walk, albeit with a walker.  He had been using a walker for the 3 years before that, so this was nothing new.  His legs were so much stronger that he could safely transfer from his rolling chair to the car with minimal assistance. And he was able to walk around in the house so he was not bed-bound.

But, he was still very confused and disoriented.  He did not have a sense of time, and he did not realize he was at home. He insisted on getting out of bed or chair without assistance, and when he did, he would fall.

We had an appointment with our neurologist, who prescribed a patch which he hoped would help with the confusion.  It took about 6 weeks, but the medication began to help.  Somewhere around the middle of March, sitting in our living room with me, he looked around and said, "We're at home, aren't we?"  And just like that, the worst of the confusion was over.

However, we still had more adventures to come.  When the decision was made to do the cervical surgery in December, the neurologist insisted we needed to do an additional surgery in the middle of his back, Thoracic 10/11 as soon as possible.  His spinal cord was severely compressed, and the doctor warned Tommy could be paralyzed.

He had a great deal of physical improvement at first, but then started to lose strength in his legs beginning the first of April.  By June first, I knew we had to have the other surgery.  He was unable to walk even with the walker, he could barely pull himself to a standing position.  He was essentially confined to bed, and it took 2 people to get him in the car. The children and I feared another surgery would put him back into that awful confused state, but there was no choice.  The surgeon looked at him and said, "What do you want to do?", and Tommy said, "I can't live like this."

The surgery was scheduled for the end of June, and after a 10 day stay in the hospital, he was transferred to a rehab hospital for an additional 20 day stay.  Because the intense confusion did not return, he responded easily to the therapists' instructions. Intense physical therapy began the process of bringing back the muscles and he began walking further (with the walker) and his strength started returning.  And, the speech therapist began working to help him eat "regular" food.

Our July homecoming was much more hopeful.  He was not disoriented, he was looking forward to having the feeding tube removed, and he was able to move around without the fear of falling, especially getting in and out of the car.

And sure enough, we were able to get him on a regular diet and get the feeding tube removed.  We were even able to take a trip to see our daughter in North Carolina.

Our journey is far from over. He has periods of confusion now and then, and he cannot walk without someone with him. Many of the usual daily needs require assistance, so he has to have someone with him 24/7. But we are so much better today than we were a year ago

Often during the darkest days last January and February (2012), my sister would remind me, "This is a marathon, not a sprint."  We're in this for the long haul, and I know that whatever faces us as we go, I have God's guidance, and the marvelous support of our children, family and friends.

Looking back, I can see God's hand guiding us through all of these "adventures".  Each time I thought I couldn't handle what was happening, someone would be there to give me unasked for assistance, an encouraging hug, a scripture, a note reminding me there were prayers going up for us.

As you walk though your journey, remember, you do not have to do this alone.  God will be guiding you all the way.

I wanted to write a book, but. . .

Tommy and I started on this journey many years ago, only I didn't recognize it at the time.  Over the past years, he has had many spine surgeries.  Then two years ago he was diagnosed with "microvascular disease of the brain", or as I learned later, vascular dementia.  Before the year was out, he had his sixth spinal surgery, this time cervical spine, to fuse C3 to C4.  (He already had a cage at C 3-7).

The surgery had some unexpected complications.  First, because this was the third surgery going through basically the same spot, his throat muscles and nerves became inflamed, and he was not able to swallow anything thicker than water.  So we had to have a gastric feeding tube inserted.

Secondly, the anesthesia and medication caused him to become extremely disoriented and confused.  He knew me and our children and grandchildren, but he had no idea where he was, what was going on, wanted to get out of bed -- well, you get the picture.

He was in the hospital 16 days and was transferred to a skilled nursing facility 3 days before Christmas, still extremely confused, unable to walk, unable to take care of any of his basic needs.

After he was released from the nursing facility, we began the journey of caring for him at home.  While we were living through all of this, I learned so much about caring for him, for me, dealing with health care professionals, figuring out insurance, that I kept saying, "I need to write a book".

With our schedule, I know I will not have time to do that, so I decided I would start sharing some of what I have learned through this blog.  I don't know how many people will read it, or comment on it, but I believe God has led me to begin this.

I plan to post at least twice a week, and perhaps more often than that as I have ideas and time.

I welcome your ideas and thoughts - God bless you all.