Day 11

Hello Everyone,

We are still at the hospital in the private room.  His condition is stable.  They had him on a low-dosage diet of clear liquids and juice yesterday and he's been moved up to a full liquid diet, consisting of soup, tea, jello, sherbet, etc.  His appetite is good, although the food isn't so delightful.  Today, he is receiving his last antibiotic treatment, last anti-viral treatment and last "steak and eggs" treatment.  He finished the last round of lipids, or essential fats.  The "steak and eggs" is a liquid concoction of potassium, sodium, magnesium, amino acids, etc.  It has been serving as his sole source of nutrition up until he was able to have the clear liquids.

I apologize if these update emails seem disjointed - I am in the hospital room as I am typing them and I am interrupted often to assist my dad or the medical staff in some way.  

The doctors have put in an order for him to be transferred to a nearby hospital that has a wing dedicated to intensive rehabilitation.  The PT guy was explaining the general procedure to us today.  First he must build up the strength to stand on his own.  Right now, he can stand in a walker with a PT person on either side or in front to help support him.  His pelvis juts out because his abdominal muscles are not strong enough to keep the pelvis steady.  His knees give out because his legs are not strong enough to support him.  So once he is able to lock his knees out and stand, they will progress to having him sway side to side, shifting his weight from one foot to the other.  Once he can do that effectively, they will help him walk.  All throughout the rehab process they will be strengthening his core muscles and stretching him out.  I have strongly encouraged him to look for a Yoga class that he can participate in on a weekly basis once he is discharged from the live-in rehab center.  Physical therapists use several yoga positions with their patients to improve their circulation, core strength, and muscle flexibility, so it would be a more natural progression to start a yoga class once he's been released from the hospital.

With Guillain-Barre Syndrome, the rehab process must be slow.  If the patient pushes himself too hard or tries to rush the recovery, he runs the risk of permanent muscle and nerve damage.  The muscle is connected to the nervous system through the nerve.  The nerve is the communication between the brain and the muscle tissue itself.  The nerves have a protective layer, called "myelin."  GBS is a progressive ascending paralysis of unknown origin caused by nerve demyelination (destruction of the myelin) by macrophages and lymphocytes.  From the research I could do via Google and Wikipedia, it seems as though these macrophages and lymphocytes are cells that the immune system sends out to destroy bad cells.  For whatever reason, the immune system received an order to attack the myelin (protective layer surrounding the nerve shafts). In other words, the protective layer on the nerve shafts have been deteriorated.  This causes the nerves to go into a defense mode.  The nerves send pain signals to the brain to let the person know that something is wrong, similar to a security system alarm when someone breaks into a house.  When the nerves are damaged, the communication from the brain to the muscle tissue is interrupted, leaving the patient with partial to full paralysis.  If the muscle tissue does not receive enough information, nutrients, stimulation, etc. from the brain, the muscle will begin to break down, which results in weight loss.  The main treatment for GBS is called intravenous immune globulin or IVIG.  My dad has received 5 days of IVIG treatment, beginning with his first night in ICU (Tuesday, Oct. 7) and ending on Saturday night (Oct. 11).  The IVIG is designed to stop the GBS progression.  The IVIG treatment will stay in his system for up to 5 weeks and will continue to help beat back the GBS symptoms. 

My dad has finished the IVIG and he is in the recovery phase.  However, right now the main issue is that the stomach is swollen again.  He will be transferred to Northridge Hospital in the next few days.  NH will send a nurse to analyze his medical chart and his strength, etc. to determine if he is a good candidate for transfer.  I'm really hoping that he'll get transferred tomorrow morning.  I fly back home tomorrow night and it would be great if I were able to help him settle in to his rehab facility.  

The biggest challenge will be to take his time throughout the rehab process.  No one knows how long it will be before he can go back home.  It all depends on how much nerve and muscle tissue damage he has sustained, how fast his immune system can repair the damaged nerves/muscle tissue, and whether or not he tries to push himself too hard during rehab.  Please keep reminding him as you communicate with him to be patient and not push himself too hard in an attempt to get home sooner.  He can have visitors and, once his stomach issues are finished, he can have "normal" food again.  However, the nurses will want to record what food he is eating, how many calories, nutritional content, etc.  So please make the nurses aware of those things if you bring food to him.  Also - NO carbonation!  He should stay away from straws, gum, suckers, etc. until his stomach gets back to normal.  And he should avoid dairy products from now on (milk, cheese, yogurt, etc.).  As we get older, our ability to process dairy is decreased.  Some people can develop lactose intolerance in their adult lives.  Dairy is quite taxing on the digestive system for adults.  With his history of GI issues, his GI doctor suggested that he avoid dairy as best he can.  

I will write more as there are more developments.  This disease has been so debilitating for him and difficult for us to go through as well and we all appreciate your continued support and prayers.  I believe he is well on his way to full recovery!  We will let you all know when visitation is okay - but we want to wait until his stomach issues have been resolved.  Thank you for understanding.  

Thanks again!!

~The Dymond Family