The transfer to Malcom Randall VAMC – Gainesville went today without incident. Ray was met by a team of physicians and care providers to ensure his needs will be met while he is there. It was around this time as well that we were notified that Ray’s second referral to the TBI program at James A. Haley Veteran’s Hospital – Tampa was approved. They will not have a bed for Ray at Tampa VA until next Wednesday, Sept 5th, at which point VA will provide medical transport to the new facility. To top the great news, Ray also passed a simple swallow test this afternoon which is very promising he will have his feeding tube removed soon! We are overwhelmed with all these great things happening for Ray so quickly. 🙂
John, Shawn, and Ray getting ready for Gainesville. 8/28/12
A huge thank you goes out to John and Shawn who helped Marlena with the transport today. It was not an easy process but their help no doubt made it a smoother ride. Ray has become very restless that he now requires a constant watch. He will adjust well to the new setting and seems very content with the way things are going. For those wishing to visit Ray while he is temporarily at Gainesville VA, he is in room 324. There are no posted visiting hours, but please no visits before 9 AM or after 9 PM. We do not have any details on where Ray will be staying in Tampa just yet or how long he may have to be there. He will continue to need all of our support to ensure a speedy recovery. His progress since coming home has been incredible and we are sure there will remain remarkable improvements in his recovery.
Go Team Ray!!!
Tomorrow morning Ray will be taken to the VA Hospital in Gainesville where he will stay until he can be moved to the Tampa VA rehab unit.
Ray has had an active week. Today marks the seventh night since he arrived at his mom’s home in St. Augustine from Erlanger. Ray has received visits from physical, occupational, and speech therapists. He responds very well to commands, and consistently. He is able to high five, say the days of the week, ask for some caffeine, as well as many other awesome things. The therapists all agree that he is ready for aggressive rehab, and his paperwork has been resubmitted to the Tamp VA. Our friend from U of St. A, Ryan, came by a few times to assist with therapy routines. On Saturday, Ryan and Tom brought Ray outside to practice throwing a ball, standing, walking, and working on leg exercises and range of motion. Later in the afternoon, Ray’s friends Carl and Joe W. stopped by and brought Ray outside for some sun and fun.
Ray and Carl 8/25/12
As we mentioned in our last post, Ray is at a level IV on the Rancho scale. TBI patients become agitated frequently at the level IV stage. Ray is talking frequently now, but it is often difficult to understand what he is saying. This agitates him even more, because he does not understand why you do not know what he is saying. It takes a few people to work with him to stay calm, especially at night between 6 and 8. Ray is progressing so quickly, and when he decides he is going to do something-get ready because he’s on the move. He loves to try to walk, go around in his wheelchair, go on the porch, sit on the couch. Due to the injury, Ray doesn’t fully grasp his limitations. He attempts to do all of these things on his own, but his motions are still unbalanced and less coordinated. In the past day, he has begun vocalizing his wishes, at times becoming demanding and impatient. Due to the level of care he requires at this stage, the Gainesville VA will be able to provide the best care. This transition should also make the eventual transfer to the TBI unit at Tampa more expedient.
Everyone’s willingness to support Ray during this time has been a huge blessing. The path to recovery will be a long one, and we are glad to have you all to support us along the way.
During a short house visit yesterday afternoon by a VA-contracted physical therapist, Ray had a short conversation stating his height when asked, and joking back to the therapist after he called Ray tiny. This is a great sign of progress! Talking now is sporadic, not continual, so you may not see him speaking while visiting.
Ray still remains a fall risk but we are taking precautions through new medicine, a more relaxing environment, and a floor mattress with alarm at night. This should help Ray remain calm and safe while he remains at home for recovery. With that, we would like to have a coordinated approach for those wishing to visit with Ray. Stimulation still needs to remain low but short visits of familiar faces and voices are a great thing to trigger a positive response. House visits should be limited to only two at a time and no visits past 9 PM please. All visitors will need to schedule through Marlena (firstname.lastname@example.org). She has taken the charge on his healthcare and will be able to best answer when visits may be possible.
VA case management is now heavily involved doing what they can to have him enrolled in the TBI program at the Tampa VA. If all goes well, he may be ready for transfer in as early as two weeks. Much of Ray’s current behavior can be classified at a Level IV on the Rancho scale meaning that he can now participate more actively in a rehab program. Brooks is still on the table as an option but it may be a while before they can become involved. Tampa VA is the only more immediate option to us at the moment for TBI rehab. Please focus the energy / prayer / etc on getting Ray to the TBI unit in Tampa. Group power can be an awesome thing.
Go Team Ray!!!
Information link to level IV Rancho Scale
Level IV as defined from the link above:
- Becomes more alert and active
- Shows unusual and inappropriate behavior
- Focus becomes basic, physical needs
- May scream out, be verbally abusive, behave aggressively, or attempt to remove restraints
- Speech is often confused or the content may be inappropriate
- Attention span is very short
- Memory and the ability to process information are impaired
- Begins to take some independent action, but is usually very dependent and needs significant help to maintain safety and meet basic needs
How can family and friends help a Level IV patient?
- Frequently remind the individual of the day and time
- Explain what is happening to the person
- Expect the person to be forgetful — you may need to repeat answers several times
- Demonstrate patience
- Limit distractions and stimulation
- Remain calm and provide a safe environment
- Limit the number of visitors to two to three people at a time
- Allow the individual to move to the extent that is physically safe
- Reduce stimuli (sights, sounds, activity) in the environment if the individual becomes agitated or restless
- Keep the room quiet and calm (close doors, keep TV off, do not have secondary conversations in the room)
- Simplify words you use when talking, decrease rate of speech, speak naturally
As some of you already know, Ray will be discharged from Erlanger tomorrow AM to be transported to his mother’s house in St. Augustine. He is to receive home health care provided by the VA until ready for an aggressive rehab program. The extent of care and medical supplies provided by the VA are still unknown. Within the coming days we are to meet with the VA case manager assigned to Ray and the home health care team to determine what supplies are needed and to establish a plan of care. From that assessment we will then be able to know what additional supplies need to be purchased for Ray. By the end of the week we plan to have a schedule developed to include Ray’s nursing care, therapy, respite care, and visiting times. Since Ray is still in the early stages of recovery, it is crucial that we do not over stimulate him at this time. The family would like to ask that all visitors please abide by the posted schedule as to not disturb the recovery process. This week will be a very trying week for the family so please keep this in mind when looking for new updates.
This link is helpful for those wishing to visit with Ray:
Family Guide to the Rancho Scale This part is taken from the Level III section of the above link: Level III: Localized Responses Behaviors
- May be awake on and off throughout the day
- Will move more spontaneously
- Reactions to various stimuli will be more specific
- May withdraw from pain, blink when presented with strong light, or turn toward or away from sound
- May begin to respond inconsistently to yes/no questions as well as simple instructions
How can family and friends help Levels I, II, and III patients?
- Use a normal tone of voice when speaking
- Speak calmly and slowly
- Have one person talk at a time
- Talk about the present, positive things, or home events
- Use the person’s name when talking
- Tell the person what you are about to do (“I’m going to brush your hair.”)
- Limit periods of stimulation/activity to 5-10 minutes
- Turn on the TV for short periods of time (5-10 minutes)
- Limit the number of visitors to two to three people at a time
- Keep the room calm and quiet; avoid over-stimulation (loud noises, too many people, bright lights, etc.)
- Bring in personal items (favorite lotion, music, posters)
- Do not speak in front of the person as if he/she were not there
Ray will be arriving to his mom’s home early this week. His mom, Marleen, arrived home yesterday afternoon. We have been purchasing much needed supplies and preparing for Ray’s arrival. We wanted to say thank you again for the donations we have received. Under the support team Ray tab above, we will be logging some of the large purchases for people to see that they have helped in a huge way. Even a small donation helps us get the needed food for Ray. The Ensure clinical strength that he will get through his peg tube costs $8.97 at Walmart for a 4 pack.
Stay tuned for a full update in the next few days. Things here are busy for us, so please don’t think we have abandoned you all 🙂
We are so thankful for the prayers and positive thoughts and energy. Please keep them coming.
Today we spoke with the trauma team doctors at the hospital. They went over the situation again with us: Ray is beyond acute care that a hospital provides, he is not at the appropriate level to benefit from rehab, and no skilled nursing facility or other facility in TN, GA, or FL has accepted the referrals. This being said, the hospital has arranged to discharge Ray immediately. The only option to discharge him to is home to his mother’s. Please recognize that the family has spent endless hours day and night searching and contacting facilities on our own, on top of the hospital sending referrals. The decision to discharge him to his mother’s home was not our first choice, but again, we do not have any other choice at this time. The hospital has decided they need to discharge him, and we bought as much time to be able to research places as we could. Ray has been at Erlanger for 55 days now. Ray cannot continue to stay in an acute facility, especially without funding. He will be discharged early next week.
With a significant head injury like Ray’s, it can take a year or more to progress to the final stage of knowing what damaged areas have healed. He is currently at a level III on the rancho scale. When he reaches a level IV and can participate in rehab, we will have him on a list immediately. Again, without funding, our choices are limited. Brooks in Jacksonville has already told us they accept charity patients. If Shepherd Center also does, we will approach that bridge when it comes. Please view the videos from our previous post on brain injury here if you want to know more about the process Ray will go through during his recovery.
The VA facility in Gainesville is helping us to get some equipment we need for the home such as a bed, walker, wheelchair, commode, etc. They will also be providing home health care support. We are not sure on the specifics or length of time, but that is a huge relief. We will be composing a schedule for what type of assistance we need and when, and we will post that within the next few weeks. The schedule will involve therapy, nursing, and visiting hours.
A special thank you to those that have been sending in donations. We have been obtaining other much needed supplies for Ray with those monies.
We thank everyone for the support and prayers,
Congratulations Team Ray, we now have news coverage on our story! Check out the Gainesville Sun article by Jon Silman.
Here is Ray yesterday enjoying time in the chair:
It is time to begin preparing for Ray to return to his Mom’s home within the next week or so. The hospital feels he does not need the acute care they provide, no skilled nursing facility or nursing home will accept him without funding (even Medicaid), we cannot locate an open bed in a VA facility, and he is not at the required level on the Rancho scale for rehabilitation. We have called so many places, and spoken with a variety of people at places all over our immediate area, as well as Gainesville and Tampa. We will be speaking with Ray’s trauma doctor tomorrow morning regarding his move and what the next steps will be. We will post tomorrow evening with an update.
Thank you for following us on Ray’s journey. Your support and prayers are priceless. We will need help with locating options for having a nurse come in daily, people to lift Ray into and out of his chair, respite care for Marleen to be able to go shopping or run errands.
As always, leave comments for us, post on our Facebook group, or send an email. Our contact information can be found in the contact tab above.