The Journey Continues

We hope everyone had a nice Thanksgiving with their family and friends.  We were able to spend the holiday with Ray, eating lunch together at the hospital on the nice outdoor breezeway.  Ray is still on the pureed food diet, but he was able to have some of the potatoes, regular and sweet in addition to some pumpkin pie without the crust.  It was a heartwarming gesture for the VA Hospital to offer a catered lunch for patients, family, and staff members.

Ray continues to progress, although he remains in the same phase as we described in our last post.  He is usually in high spirits, but can still become negative and confused without reason.  Since Ray’s condition has been steady for a few months, it is time to begin thinking about his homecoming.  December will be three months since he arrived in Tampa at the VA Hospital, the usual reevaluation timeframe, and the team will be discussing the next course of action in regards to Ray’s therapies and treatment.  It is possible that he will be home by the end of December.  Ray still requires 24/7 care, and is not healed enough to be able to provide his own care.

As we prepare for the next family meeting with Ray’s care team on the 3rd of December, there are many items that still need to be considered before Ray can be discharged home.  Home evaluation, frequency and availability of care and therapies, and medical supplies are just a few of the topics that we will discuss.  During this meeting it is expected that we will have more of a definite timeframe of Ray’s return home and the extent of the support we will receive from VA.

Studies have found that prolonged states of PTA have resulted in delayed cognitive return and function of patients post TBI.  Ray has just passed the five month mark since his accident, putting him into the extreme TBI/PTA range.  We appreciate everyone’s thoughts and prayers during these past five months.  We are thankful for Ray this year, and for all of you.  Please keep Ray and our family in your thoughts and prayers this holiday season.  Our wish for the new year is that Ray comes out of the PTA phase and can begin healing more quickly.  Please focus any energies on this goal.

Thank you!

Team Ray

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Day by Day

Enjoying the air on a fine Tampa morning

Another great weekend spent with Ray.  He was a bit more in the fog of PTA this time for us but we were still able to sit with him for several hours and have conversations about the past and present.  At times Ray appears very aware of what is going on and can even joke around a bit with those with him.  Other times he is very distant and may say things that make no sense to what is currently going on around him.  Distinguishing between real and not-real is still an ongoing challenge, but he seems to eventually be able to determine the difference.  Nightmares and problems with sleep still haunt his nights, which lead into waking moments and confusion.  Medication is being used to help treat the sleep problem and with time he should be able to have more restful nights.  A side-effect of the sleep medicine may be grogginess and disorientation.  It may be a few weeks before the right med and dose can be determined.  Cognitively Ray appears to be doing about the same.  It has been an off and on type of awareness with him that is different each day.  Progress is happening, but at a slow rate.  This is typical of a TBI.

Physically Ray is doing better.  Upper body muscular control and range of motion have improved through therapy.  Weighted utensils and other daily use items are being introduced to help Ray do things on his own.  Today he was able to brush his teeth on his own.  The use of weighed items is to help with tremors, which are still in the process of being treated more effectively.  His left arm and head are affected by these, causing him to shake without control of the motion.  It is important for Ray to start doing more things for himself and to make use of both of his hands.  One thing that we have been doing that seems to be helpful and fun at the same time is to play catch with a small, soft ball.  He is not allowed to walk outside of PT at this time due to him still being a fall risk.  He has become good at maneuvering around his floor in his wheelchair though.  Currently he is receiving an hour of PT a day during the week and two hours on Monday and Wednesday.  The daily one hour session is dedicated to mobility in his wheelchair and strength training for his legs.  Various activities are used during his sessions including the use of a weighted walker.  The additional two sessions a week are for the locomotor clinic where four therapists assist Ray with walking on a treadmill, each supporting a different portion of his body.  Until Ray moves beyond being a fall risk, he will need to be restricted to his wheel chair.

Now that Ray is able to swallow honey-thick food, he has been able to eat pureed food.  He receives three pureed meals a day in addition to snacks of yogurt, pudding, and thickened juice.  You’d be amazed at what they can puree!  His lunch Saturday consisted of pork and corn, and his dinner Saturday consisted of lasagna and green beans.  His diet remains strict due to him still silently aspirating, meaning that food can flow into his lungs if not properly controlled, which can lead to choking or pneumonia.  Until Ray is able to swallow more controllably, he will remain on this diet.  It is very important that visitors comply with his care team’s guidelines.  As those that know Ray well, he is very serious about food and will try to get people to sneak him anything.  Do not fall for his tricks.  Instead, make use of the diet forms below:

Pureed Foods Allowed

Honey Thick Liquids Defined

Stay tuned for more to come soon.  Thank you for following and supporting Ray on his healing journey.  As the holidays approach, please take time to give thanks for all the positive in your life.  We are thankful for our Ray, and for the overwhelming support of his fans. 🙂

Brothers 🙂

If you are around on November 16th, check out the Pray 4 Ray Event in St. Augustine.

Ray thanks State Farm and all those putting on the Pray 4 Ray Movie Event on 11/16.

Team Ray