We are definitely excited about transferring to Barrow. Barrow is a world-renowned facility. Representative Gabby Giffords went there, as well, following her gun-shot wound. The transfer to BNI means he is strong enough to tolerate 3 hours of therapy per day and alert enough to participate in 3 hours of therapy per day.
In some ways, we won't see as much progress as quickly. Medically, he is becoming so much more stable and less dependent on external support. Rehab progress tends to be slower. We all know how painfully long it takes when we are trying to get stronger or build endurance. It requires a lot of repetition and time to re-build what only took a matter of weeks to break down. Scott has lost 30 pounds already! Egads! We all know he had the absolute minimum of fat to begin with, so you can imagine that a lot of that weight loss is muscle atrophy.
Neurological healing is even slower, typically. Nerve tissue can regenerate if not too badly damaged, but the process is extremely slow. The rapid progress we have seen over the past 2 weeks is likely due to resolving swelling in the brain. Therefore, the lessened swelling is impairing his cognitive function less as the swelling dissipates. Any actual brain damage, will be slower to heal. We do expect his rate of progress to plateau at some point. So we won't always have the big, exciting, daily progress that we have had this week to report.
Being at Barrow will facilitate faster gains, for sure. Three hours of therapy per day definitely works! ... And we are all anxious to learn what we can do help. There will be roles for all of us in this process.
Barrow has a great educational document that they have prepared for patients and families. I am including the link for those who also have an interest. We actually recommend reading it for those who plan to visit Scott at Barrow. It will answer a lot of your questions and it will help prepare you, and allow you greater confidence in your interactions with Scott.
The most important section to read is the "Recovery after Brain Injury" section, pages 20-26. For the Reader's Digest version... Page 22 applies to Scott in his current condition.
http://www.thebarrow.org/stellent/groups/public/@xinternet_con_bni/documents/webcontent/bnp00046.pdf
Helpful information for those who do read the full document:
1. Scott had Diffuse Axonal Injury (DAI), grade II, and a right temporal epidural hematoma.
2. He did not have any secondary injuries (cerebral anoxia/hypoxia, increased intracranial pressure, or seizure) that we are aware of. He has been on anti-seizure medication since the accident, however, due to the high risk of seizures with DAI. He will be at increased risk for seizures for 2 years.
3. He is no longer considered to be in a coma. His original Glasgow Coma Scale score was 7. It is now 15.
4. The Rancho Los Amigos Scale will be the best scale at this point in his recovery to measure his status and progress. Originally, he scored a II. Now he would score a IV or a V ...hard for me to discern for sure until I can see him in person on Sunday. I am thrilled how quickly he has moved up these scales. I thought the progress on this scale would be slower, for sure.
5. He is considered to have had a severe brain injury.
6. Medical Management:
a) He does have various other injuries and fractures to manage.
b) Again, we are on the watchout for seizures.
c) Scott has had significant high blood pressure and tachycardia (Fast heart rate)in response to his head injury.
d) Heterotrophic Ossification (HO) - We won't know about for quite some time if he will suffer this side-effect. This is the weirdest possible complication, in my mind. I am extremely interested in finding out more about the how's and why's of this. Basically, for those who don't read the document, abnormal bone growth can occur in joints, in places that bone should not be, following a TBI (traumatic brain injury). It is most common in the shoulders and hips. Simply crazy to me! If anyone out there knows why HO occurs following TBI (I want to know the physiology behind it), please let me know!
Good involvement of family and friends is stated (in the BNI document) to positively impact the outcome of TBI patients. This is where we will begin to need help. We have been instructed/counseled to provide stimulation for Scott (one stimulation at a time, brief sessions (i.e., 1-2 minutes at this point) and to vary the stimulation to effect all 5 senses).
Once Scott transfers to Barrow, he should be strong enough to have visitors. We know that a lot of family and friends have been anxiously awaiting this day, when they can come to visit. We will need to schedule the visits to avoid overstimulating him and exhausting him, but we know he will love having visitors. We can see that there may be days when someone is scheduled to visit, and we may need to call to say "not today". Just want everyone to have a heads up on that.
I (Patti) will coordinate the visitation schedule. If you are interested in visiting Scott, you may reach me at 801-589-1466 or pjdn150@gmail.com. You are more than welcome to simply visit....The social stimulation will be fun for Scott and will be stimulating to him, for sure. ...But... If you would like to bring an idea or a prop to provide brief (1-2 minutes) stimulation for one of the 5 senses (sight, hearing, smell, taste, touch), that would be a bonus! A short, simple game could even be a good option. I am sure he will get much more variety this way, which will be more fun as well as more challenging and stimulating to him!
Also, for those with the ability to make a short (1-2 minutes) video.... you may video a message for Scott, email it to me at pjdn150@gmail.com, and we will play it for Scott when he is alert and awake.
We are excited for this next stage! Surgery tomorrow.... post-op recovery for a few days, ... then off to Barrow!
Love to all!
Patti
Thank you for all the information!!! I check this blog daily for any and all updates and have been so, so impressed with how well you have kept us all up to date!
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