Update: Day 23

After just one IVIG (immunoglobulin) treatment, Neal is able to wiggle his arms and legs! He has four more treatments over the next four days.

His feeding tube (currently running down his nose) is being relocated into a small incision on his belly to feed directly into his stomach. This will make it much more comfortable for him, as the one running down his throat causes a lot of irritation.

I've been reading him the email's and posts daily and it always makes him smile.

Thank you all!
Belinda

Update: Day 21

They are once again discussing starting the immunoglobulin treatment. The hope is it will lessen the duration of the GBS.

I want to thank all of you for the messages you have been leaving. I read them to him and it really helps lifts his spirits. Please keep them coming.

Belinda

We want YOUR updates!

Please send Neal what's going on in your life; how you are doing, what's new, the latest gossip, what's happening at DTSC... anything to keep Neal in the loop and feel less disconnected.

Email Alyson directly (subject: Neal's blog), and I'll print them out & hand them over to my mom.  She'll read them to him and I'm sure it will lift his spirits and maybe give him a much needed laugh. :)

Update: Day 19

Neal is now up to two hours a day off the ventilator. Tomorrow they are going to try for three - four hours. It takes a lot effort and he ends up sleeping much of the rest of the day.

Gregg and Nanette were able to visit this weekend. I think Gregg is able to read his lips better than me.

Update: Day 17

Neal received a new trachea tube in today. Though the procedure it self went well, it wore him out.

He must think all day about what he is all going to tell me when I get off work, because when I come into his room...he has a lot to say. He tells me my lip reading is getting better...but I think he's just being nice.

No new movements, but he continues to try all day to move his limbs. It's a slow process and I know it must get frustrating when he doesn't improve at the pace he wants.

Gregg and Nanette are coming for a visit this weekend, and he is really looking forward to seeing them tomorrow.

Belinda

Update: Day 15

We had a short visit tonight. Neal was tired, he'd had a long, but GOOD day. He was able to stay off the ventilator for 1/2 hour today. They are hoping by the end of next week to take him off completely. No new movement, but his attitude remains upbeat.

Belinda

Update: Day 14

This post is from Belinda:

Molly visited her dad last night. They had a good visit, she was able to do a really good job of reading his lips. He wanted to let her know how happy he was to hear she is keeping her grades up. And he must have asked her for half a dozen hugs.

He is already asking when he will be able to start working with rehabilitation. He is a fighter.

The pneumonia hasn’t cleared up yet, but it sounds like it is getting better.

They are working on the blood clots he now has in his legs. I guess he’ll be on blood thinners for a while.

He also has a little device in front of him that he can puff air into that turns on the TV and/or summon his nurse.

Update - Day 13

This post is from Belinda:

• Doctors have decided against the IVIG treatment.  They feel the risks out way the benefits at this time.
• They are still trying to work on controlling his pain management by trying to figure out what medications work best for him.
• Neurologists are please with him regaining some sensation, but to prepare for plateaus and regressions.
• Neal & I talked with the doctors about when the ventilator may be removed.  They are starting to wean him off of it to see how he responds.  Better assessment by the end of next week.
• Neal's spirits are high

We are both very appreciative of all the love and support we have been shown from our family and friends.
Neal wants to especially thank his brothers for making sure I am okay. Typical of Neal - he is more worried about me than himself.

-Belinda

Update - Day 12

This post is from Neal's brother Lee:

Hello all,

Neal is doing well again today.  His bed was adjusted to sit up straighter so he could communicate better.  And he could see bettter with his glasses on. His feeling in his nerves is beginning to return.  A pain management pharmacist visited and is developing a plan to reduce the pain resulting from his invasive surgery at the beginning of the month.  He's asking how all of his friends are doing.  In his room he asks for a chair for Belinda, and asks that a big Starbucks be brought for his primary nurse who can read his lips very well.  Molly came for a visit, but unfortunately at that time he was having an episode.   She left her report card showing her good grades.  When he knows it's finally time to leave at the end of the day. he wiggles his eyebrows to say good bye for now.

Lee

Update: Day 11

This post is from Neal's brother Lee:

Hello All,

Neal is doing much better this afternoon.  His eyes are clear and are tracking well.  He's forming words and communicating his wishes.  Today he is asking for a magnetic whiteboard with letters and pens.  And his glasses so he can see the pictures and messages across the room.  He asked Belinda to "hold my hand" and squeezed using several fingers.  His nurse can read his lips, she can convey more complicated sentences.  When it was time to leave for today and we'll be back tomorrow he wiggled his eyebrows.  His current wishes for visitation is immediate family only, while he's still hooked up in this manner.  

-Lee

Update: Day 9

From Belinda:
I just talked to the nurse and she said the doctors have decided to try immunoglobulin treatments (IVIG) instead... other than that, no changes today.


From Alyson: 
It takes at least 1,000 blood donors to equal 1 treatment of IVIG.  Really makes you realize the importance of donating blood, doesn't it?  If you are local to Sacramento, go here:  http://www.bloodsource.org/

Update on Neal's status

Neal is being treated for a list of symptoms defined here
He is being primarily sedated to help his body heal
He is on a ventilator to help him breath
Still no movement in his extremities
Neal is getting his tracheotomy today = not a good day
They are sedating him until tomorrow

Please keep the thoughts, prayers and well wishes coming... I read all the messages to him.
-Belinda

Visitations

We are working on creating a schedule for visitations right now...check back soon for an update.  Visitations will be limited to time of day, number of visitors on a given day and the length of stay for each visit.  Please keep in mind this is temporary and will change as Neal gets better and stabilizes.

Update - day 7

No changes today. He has requested no visitors. He’s angry, mad … and whatever other emotions you might have given his new situation. I’m sorry, I know you all want to go and visit with him and let him know you love him… but he needs so much rest and calm in order to recover. So until further notice no visitors. I’ll keep asking how he feels about visitors each day and I’ll let you know.

Guestbook & FAQ's

I have added a guestbook as a way for everyone to let Neal know all your well wishes.  I also have been adding a few things on here to help with all the questions everyone has as well.  As we all know, this is a very rare diagnosis and nobody really knows what it is or what it all means.  I have added some links and videos to the side bar.  And if anyone has any other questions, please feel free to post and I'll try to answer to the best of my knowledge.

Links:
GBS International
GBS.net

If anyone has any pictures they'd like to send, I'd be happy to post those as well. :) alyviducich@comcast.net
Please pass this blog on to anyone you think would like to keep updated on Neal's recovery.  I know he is loved by many.

Diagnosis

September 1, 2010 Neal went in to the hospital for a scheduled spinal surgery.  It was a pretty complicated procedure and overall the surgery went well. However, he had a setback [September 7th] and was readmitted to the hospital. He is currently in ICU and on a ventilator while he receives treatment.

A team of doctor's have finally come to the diagnosis of Guillain-Barré (Ghee-yan Bah-ray) Syndrome [September 8-9]. 

It is a very rare, inflammatory disorder of the peripheral nerves those outside the brain and spinal cord. It is characterized by the rapid onset of weakness and, often, paralysis of the legs, arms, breathing muscles and face. GBS is the most common cause of rapidly acquired paralysis in the United States today, affecting one to two people in every 100,000.
It typically begins with weakness and/or abnormal sensations of the legs and arms. It can also affect muscles of the chest, face and eyes. Although many cases are mild, some patients are virtually paralyzed. Breathing muscles may be so weakened that a machine is required to keep the patient alive. Many patients require an intensive care unit during the early course of their illness, especially if support of breathing with a machine is required. Although most people recover, the length of the illness is unpredictable and often months of hospital care are required. The majority of patients eventually return to a normal or near normal lifestyle, but many endure a protracted recovery and some remain wheelchair-bound indefinitely.

Neal has a great team of doctors treating him and closely monitoring him. Although he has a long road to recovery ahead of him, there is hope for a full recovery (and we all know what a strong person he is). Belinda has asked that Neal receive no visitors as he needs his rest and as much calm as possible. I will let you know if there is anything we can do to help/support them or if there are any changes as it would be overwhelming for Belinda to keep everyone individually informed. For now, please respect their wishes and keep them in your thoughts and prayers.
We will keep this blog updated regularly for all of his friends and family.  Feel free to leave comments and share this blog with anyone who would like to keep updated.

This blog is managed by Alyson (daughter to Belinda Hutchison).