Day 21

Hello Everyone, 

As of 5 pm Pacific time, my dad was released from the hospital after 21 days of "sentence."  The hospital and his insurance company have arranged to deliver the necessary equipment he will need and have arranged for him to have a home nurse and physical therapist visit him everyday.  He made a deal with the insurance company that if he determines that being at home with limited care is not conducive to his overall recovery, then he can check into Northridge Hospital at will and receive the same insurance coverage either way.  

My dad is very relieved!  I'm very worried still about the times that he'll be alone at the house because he did not arrange to have at least someone there all day with him.  I think he just needs to see for himself how much of a struggle it may be to perform normal daily tasks alone.  I hope he is honest with himself and doesn't let his distaste for a hospital prevent him from seeking a fuller recovery at the rehab center.  I hope even more that he is a miracle case of fast and thorough healing and that he can reach a full recovery in the comfort of his own home.

All we can do is wait and see.  I'll keep you posted as best I can.  

Thank you all for your continued support.

Day 16

ello Everyone,

I am happy to report that my dad's stomach situation has been improving! He had been on a steady diet of clear liquids, with intake restricted to 3-4 ounces of liquid an hour. He was graduated to a full liquid diet by yesterday morning and was able to have some pureed fresh strawberries and peaches (no more than 6 ounces in 6 hours). He was so thrilled to have that smoothie!! Today, the doctor told him that he should be fine to start on soft foods tomorrow morning. He has had the following items approved: fresh strawberries, peaches, nectarines, grapes, mac n' cheese, grilled cheese, rice crispies with milk, among some other similar foods. He is so excited!! He is receiving antibiotics for the low-grade pneumonia which is helping. He has been experiencing less pain, so he's had to take less pain medications. He is still having trouble sleeping at night, but it sounds like that's improving as well. The doctors believe that if he continues to improve like this, he should be able to transfer to the rehab facility by Monday or Tuesday. This disease tends to fluctuate a bit - there are victories and setbacks quite frequently. Thank you all so much for your support. My dad is very blessed to have such good strong friends like you who care so much about him. I can't wait for him to get better! I know he can't stand the hospital and just wants to go home and get back into his routine. It may take a long time, but good support makes all the difference.

Thank you,

~The Dymond Family

Day 15

Hello Everyone,

My dad's condition with the GBS disease is still stable and we are still in the private room of the hospital.  They have completed the antibiotics and antiviral medications.  He is still receiving the IV nutrition (amino acids, lipids, etc.).  He has been on a cycle for several days where his digestion improves then worsens then improves again.  The doctors have done several tests, analyzed his intake/outtake log, and x-rayed his stomach/abs.  They have ruled out any type of physical obstruction in the intestines.  The doctors have concluded that the GBS has now begun to affect his stomach and intestines, which means they are running extremely slowly.  They have restricted his intake to a few ounces per hour MAX.  They have him on a modified clear liquids diet with intake restrictions.  No carbonation, no dairy, low acid, low ice, no gum, no hard candy, no use of straws, etc.  His stomach is still very bloated and he has nausea from time to time, but not often or intense.  They can give him medicine for the nausea and any pain.  

He seems to be sleeping very well with the anti-anxiety medicine (the same kind they gave him before his MRI a couple of weeks ago).  He had not been sleeping very well, even when he took the Ambien sleeping medication.  His spirits fluctuate with his stomach condition.  He is still not taking any visitors because he is so weak, but if you have anything you would like to send him (greeting cards, DVDs, magazines, etc.) to keep his mind occupied and challenged, please send them to the house.  Matt has been taking care of all of the business activities and bills, etc.  Matt will bring any mail to my dad in the hospital.  We had been bringing him the newspaper everyday and he would flip through it, but he always read the high school football section.  :-)

Since he's been in the hospital for 15 days now and he's been primarily lying flat in the bed, he's developed a mild case of pneumonia.  The doctors caught it very early and they have started treating it.  The nurses and doctors have been telling him to keep the angle of the bed elevated to at least 30%, to sit up in a chair for an hour or two twice a day, and to breathe into a lung exercise device.  He did keep the bed angled some of the time, but would begin to hurt his low back and pull on his leg muscles, so he'd lie flat.  It seems as though he may still be on the Plateau phase of this disease - where any day can bring a small improvement or a small setback.  

My brother has been trying to balance visits at the hospital and managing the business.  He is having his share of physical ailments - he went to the doctor yesterday for x-rays of his low back.  He's been having terrible back pain and the doctor suspects bulging discs in his low back.  Yoga would do both my brother and my dad a lot of good (once he's out of physical rehab).  I hope they can motivate each other to keep up with it.  My dad's girlfriend will be staying with him throughout the daytime to keep him company, help him with tasks, and help him to convey symptoms to the doctors and nurses.  

The doctors and nurses are doing all that they can.  My dad needs to follow their guidance and instructions as far as bed angle and liquid intake restrictions.  All we can do is help him get through the "jail sentence" by engaging him and keeping his mind busy.  He will be strong enough to handle visits and phone calls soon, but for now, please either wait or send him materials (games, magazines, etc.) to keep him busy.  Please do not send any food items as he is not able to eat/drink anything other than clear liquids.  Once he's cleared for rehab and his stomach is normal, I'm sure he would *love* some home-cooked meals and goodies.  

If you would like to mail anything to him, the street address is 22736 Erwin Street, Woodland Hills, CA  91367.  My brother will bring it to the hospital when he visits, which he tries to do at least once a day.

Again, we appreciate all of your well wishes and prayers.  

Thank you,

~The Dymond Family

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

Day 9

Hi Everyone,

More Great News!!!!  Today, TOM (The Old Man) graduated from ICU and into "general population."  Now he just needs to kill someone to get respect.  :-)

He has a private room and is currently watching a baseball game.  He is in much better spirits!  He has a wireless heart rate monitor and the IV drip thing is on a pole on wheels with battery backup, so we unplugged the machine and he took a lap around the hallway in the wheelchair!  He is so stoked to be "out of jail."  Once his stomach issue is done, they'll move him to a rehab facility - most likely before the end of the week.  Yay!!!!  His vitals are all still stable, and I think he's going to have a speedy recovery.  The only issue I can see is that he's going to want to rush through the physical and occupational therapy, which will actually end up setting him back.  So we will need to constantly remind him to take it easy and trust/listen to the therapists he's working with.  He should be able to start drinking water soon then he'll graduate to solid foods by the end of the week possibly?  

Thanks again, everyone, for your continued support!!!  I've attached a picture I took with my laptop a few minutes ago - just look at that happy mug!!

~The Dymond Family

Day 7

Hi Everyone,

Great news!  He's doing so much better today!  They took the tube out of his nose this morning (which made him so happy).  They're still monitoring his stomach situation, so he's still on food restriction.  He can have a little bit of water if he has to take medicine in pill form, but nothing else by mouth.  He's still catheter-free and has full control of his "bathroom functions."  His spirits are much better, although he's reluctant to say it out loud.  He recognizes that he's doing better, but his measurement of "better" is more like having Arby's and a Coke or running laps around the hospital.  Once he's off food restriction, he'll have to ease back into food - starting with leafy greens, whole grains, etc.  No red meat to start and no citric acid.  Once his stomach starts getting used to solid food, he can start easing back into his crap food like Arby's.  

The doctors are all very pleased with his progress.  His vitals are steady and his strength tests are showing small improvements everyday.  The PT person came by today and did some leg and arm exercises in the bed.  They'll come back this afternoon and try to get him up in a walker for a small lap around the ICU (about 20 feet) and sit up in a chair for about an hour.  A respiratory therapist has come by everyday and made him blow into a machine to test his lung capacity.  With GBS, there is a strong possibility that the disease will affect his lungs/heart.  If that happens, they have to put him on a ventilator.  But he's been doing well on the breathing tests.  They become worried if his tests are 1 liter of air and below.  He's been blowing between 3.1 and 3.8, with only one 2.83 on Sunday.  He had a really hard time on Sunday because his stomach was so bloated/swollen that it was putting an unbelievable amount of pressure on his diaphragm which made it extremely difficult for him to blow hard enough to produce a good score.  But today, he blew a 3.28.  

The doctors have been saying that he will most likely be transferred out of ICU into a private room in the hospital today.  The head doctor will make that determination today after he comes by to see him.  They said they feel very confident that he'll be transferred to a rehab facility by the end of the week.  Great news!  The tough part for him will be to take his time during the PT/OT recovery.  If he pushes himself too hard, then he'll set himself back.  Fast is slow, slow is fast.  He isn't known so much for his patience, so he'll have to be disciplined!  I'm so glad - I believe the worst is behind him!

Thank you all so much for your continued support and well wishes.  It means so much to me (and to him).  It really gives you a new perspective and appreciation for what you have.  This disease could hit anyone at any time with no explanation.  They have not been able to determine the cause, and it's not even a disease so much as a syndrome, or a collection of different symptoms.  

I will continue the updates through Saturday - I fly back to Atlanta on Saturday night.  By then, he should be strong enough for phone calls, emails, etc.  We're trying to convince him to purchase a laptop so he can use it in the rehab facility.  

Thanks again for all your support, thoughts and prayers!!!

~ The Dymond Family

Day 3

My dad is still in Intensive Care.  He has gotten a bit worse, but they are monitoring his heart and lungs.  We are about to go get another cat scan and then another MRI after that.  The respiratory therapists were here in the morning to test his breathing and said it looked good.  

Because of the virus he's fighting off coupled with the myriad of drugs they have him on, he has very little energy, which makes him feel very depressed.  He needs help to turn over in the bed, and he's very used to being able to do everything himself.  He's not comfortable with depending on anyone else.  I was able to get the nurse to get an "egg crate" mattress pad to help with the comfort level.  

It's pretty bad.  We just have to trust that the doctors and nurses are doing everything they can.  And it will just take time.  It's too soon to tell how long he'll be in Intensive Care or how long he'll have to be in the hospital period.  We won't know what type of rehab he'll have to go through to re-learn to walk.  

I'll keep you all posted.  Thank you all for your support and thank you for keeping us in your thoughts.  

~Jenn