Update: Day 71 - "I'm outta here"

Hello everybody!!!

Yes, it's true!! I got home last Thursday (November 11), but I am keeping a low profile right now. I'm walking, but it will be several months before the GBS works it's way down my lower legs and left hand. My feet are about 50% numb, but the burning pins and needles throughout both feet indicate that the nerves are still live and will slowly regenerate, at least that's what the prognosis is from the neurologists that were treating me at the hospital. If things continue the way they have been going, I hope that this will all be cleared up by next summer, if I'm lucky.

I want to thank all of you for keeping tabs on me and Belinda throughout this unfortunate ordeal. I can only hope this is the last thing in a long list.... oops, I am reminded that I better knock on wood at this point. I am a very lucky man!!! I'll post again in a few days with some recent photos. Now that I'm home, I can be reached at our home phone, 916-682-1400, or by cell phone, 916-690-7971, or by e-mail at kneehole_1@yahoo.com.

Thanks again everyone for all your love and support.

Kneehole (Neal H.).

Update: Day 64

Neal won't be coming home on the 16th after all.....

He will be coming home TOMORROW!!!! And with only the assistance of a cane! The next post on here will be from him, here at home.

Belinda

Update: Day 63

Monday, Neal walked up and down the parallel bar 6x’s without touching the bar, even during the turns.  He then worked on his legs and arms on the press machine for 20 minutes, then he walked up and down a full flight of stairs 2x’s!, and then took a 50 yard stroll around the downstairs with only a cane!  I think he’s ready to come home.  : )

Belinda

Update: Day 61 and pictures!

This week has been pretty busy.

Neal & Belinda in the hospital lobby

A group of his friends from DTSC visited him and brought him some See’s candy.  He was REALLY happy to see them and touched by their visit.  He wants to get back to work as soon as possible. 

I took Molly to see him on her usual Thursday night visit.

Neal & Molly

This weekend his brother Lee came down for a visit as well as an old friend from school, James Pavlovich.  The smile on his face tells it all.

Lee

Neal & James

Neal can walk much further now with ONLY a walker.  He truly only needs the wheelchair for long distances, if he over does it.
-Belinda

 

Countdown to home

Taylor & Hailey made their papa Neal a paper ring chain to countdown the days he has left in the hospital.  Hailey cut out all the strips and helped staple them together and the picture is courtesy of Taylor.
Is that Neal on a bed with wheels?  Or is it a wheelchair?  Either way, I think it was really sweet that they made this for him.

He hung it up directly across from his bed so he could see it.

Update: Day 58

Neal stood up yesterday from a sitting position without any support or help.  He was able to balance there alone for a short period of time.

He also…. Walked yesterday for 45 minutes in the sling.  The sling was there to help him with his balancing only, not support of any body weight.

They did a strength test on Monday to determine what muscles need to be worked on and for the last few days they have been concentrating on those.  Seems to be working!

-Belinda

Update: Day 55

Neal was able to come home for a visit on Sunday.  We had a really nice day visiting with family and friends.  Gregg and Nanette were there, Ron and Ginger stopped by, as well as my daughter Alyson, son in law Jake and my granddaughters, Taylor and Hailey.  Gregg, Nanette, Neal and I then went out for lunch.  I think we wore Neal out.  When we were on the way back to the hospital his nurse was calling me to see if I was bringing him back (we ran a little late).  I think they missed him.

He is continuing to gain more strength and endurance every day. 

Release date is still on for the 16^th!!!

Belinda

Update: Day 52

Thursday in Occupational Therapy they prepared for their Halloween Party.  Neal decorated the cupcakes…orange frosting, with candy corn fangs, red hot eyes, and black licorice legs. 

In Physical Therapy he stood up from a sitting to a standing position with no help and balanced on his feet for about 10 seconds.

The Nero Psychologist took him on a tour of the new part of the hospital.  They tried to wheel into the cafeteria but were kindly asked to leave…. I guess patients are not allowed in there.  So, then they rolled outside and spent a ½ hour outdoors.  This is the first time he has been out side in almost 2 months.  He does need some sun!  Neal said the Nero Psychologist told him he is the most “balanced patient” he has from the Nero Unit (but he maybe humoring him here a bit… ; )

Belinda

Update: Day 51

Sorry for no update yesterday…. My youngest granddaughter had a little accident yesterday and needed some stitches to her forehead… it threw me off track for the day.

They put Neal up in a sling-walker to help support him as he tried to walk. He said if only he was 130lbs, he could support himself! Only a little way to go! He is determined to walk out of the hospital. He continues each day to make huge improvements. His color is great, new haircut, showered and shaved…doesn’t look like he belongs in a hospital at all!

Kimberly and Trina paid him a special visit yesterday. They showered him with hugs and kisses and showed him just how much he means to them. : )

Gregg and Nanette will be coming up this weekend for a visit; I know he is really looking forward to that.

Belinda

Feeling the love

Hey everyone, Alyson here (Belinda's daughter). I just looked at the "stats" on Neal's blog and he's had over 4,000 page views so far! Amazing! Just shows how much Neal is loved and that everyone is wanting to keep updated on his recovery.
And thank you to all of those who have emailed me their updates for Neal to read. I have passed them along to my mom & Neal as they've come in.
Also a big thank you for all the kudos on the blog. I'm so happy that it has helped everyone stay informed. My mom and I have joked about the "old days" of no internet, no blog, no email, no cell phones or texting. How in the world would everyone keep updated when someone was in the hospital? Good ol' fashioned snail mail! Yeah... you would have never received this many updates that's for sure! :) Good thing we live in this fabulous world of technology!

Update: Day 47

Neal has a tentative release date of November 16^th!!!

There isn’t a day that goes by that he isn’t able to do something he wasn’t able to do the day before. Yesterday he was complaining about the pain in his feet and toes. This is a GREAT thing! That is the first sign that the nerves are coming back and the first step for him to be able to start walking. His upper body is strong and his upper leg muscles are strong as well. All he need now are those feet and toes.

The holiday’s are just around the corner and there is a lot to be ‘Thankful’ for this year.
Belinda

Visitations

You are welcome to visit Neal on Monday's, Wednesday's, Friday's, and/or Saturday's before 10:00 AM or after 4:00 PM (after he is done with his Physical Therapy) or anytime on Sunday's (his one day off PT). He has his cell phone on him now, so if you would like...give him a call.

My Update: Day 44

I can put on my own socks and sandals! I now use the regular 'Big Boy' toilet to poop! : ) No more bed pans! Standing up on my knees with only help with keeping balanced. Improvement everyday!

Neal

(You can all tell... he hasn't lost his bathroom humor! - Belinda)

Update: Day 42

Neal’s started his first day of physical therapy. He worked on some core strengthening and some exercises to stand. He worked on pulling up from a sitting position to standing. These are done in sets of three. He also worked on walking with the parallel bars support. His therapy is 2 ½ hours in the morning and another 2 hours in the afternoon. Needless to say, he works really, really hard and gives it his all during these sessions. He’s very tired afterwards, but is excited on working on his recovery.

Belinda

Update: Day 39

Neal will begin 6 day a week, 3 hour a day rehabilitation routine on Monday. He is now standing up with very little help. He believes he will be home within a month. Of course he will still need to do out patient rehab for a while, but soon he will be back to his normal self.

I can't wait to have him home again!

Update: Day 37

Lee, Neal’s brother, just talked to Neal on the phone. Neal was sitting in the chair eating lunch and watching TV. Yesterday he stood up for 30 seconds using a walker and a little help. He's 100% unplugged from everything. The trach is totally out, and the opening in the skin is healing up. Tomorrow they will move him to the physical rehab unit. He's set an ambitious goal, to walk out of the rehab unit one month from tomorrow. He realizes this is ambitious, it may take a little longer, and he may need a walker when he leaves. But his firm goal is to take care of himself when he comes home.

We are working on setting up a schedule to visit Neal. Once we know what his physical rehab workout schedule will be, we will have something setup on the blog to sign up for visits for those who would like to visit.

Belinda

Update: Day 35

Finally, the trach tube has been removed. I’m sure he is very happy to finally have that out of this throat.

Every day he seems to be regaining some strength back in his arms and hands. He is also starting to be able to move his legs. His doctor said he has never seen anyone recover this quickly from a case as severe as his.

He requested some candy… guess he is feeling better. : )

Belinda

Update: Day 33

Neal is finally out of ICU! They will be removing his trachea tube within a day or two. He has regained enough strength in his hands that he is now able to hold on to things. The neurologist has reevaluated his recovery time from 6-12 months to 4-6! Personally, I don't think it will be that long.

Update: Day 30

Molly and I had a nice visit with Neal this evening.

I would like to thank the person who sent him his foam hand grenades from his desk at work. He had a huge smile on his face when he saw them. That's Neal!

They are most likely going to remove the trach tube tomorrow or Saturday. He still isn't ready for visitors, but is deeply moved by all the well wishes from everyone.

Update: Day 28

Neal passed the 2^nd breathing test to begin removal of the ventilator this morning. He did so well, they hooked up the oxygen mist supply w/no vent support. That went so well they went ahead and installed the pass button that allows him to talk. That went so well…they pulled out the feeding tube! He is now eating normal food and oh yeah…. TALKING!!!

We spent the evening catching up during his dinner. It was WONDERFUL!!!

Belinda

Update: Day 27

From Belinda:

Neal is able to reach up and touch his face!  His arm and hand mobility and strength is improving every day.  He took a break from getting off the ventilator yesterday.  I think he was worn out working on building his arm/hand strength yesterday.  They still feel they will be able to move him to the respiratory recovery unit upstairs in the next day or two.  Which means he will very soon be off the ventilator.  They will be setting him up with a voice box so he can communicate easier, he will keep that until they are comfortable in removing the trachea tube.  I don’t know how long that may take.

I talked to him about visitors and he still wants to wait until the feeding tube is out and he is able to communicate easier.  I know everyone wants to visit and he does want to see all his friends…but his days are more about working on his recovery right now.  His spirits remain high… the GBS is not going to slow him down for long.

Update: Day 25

Neal has made astonishing progress since I saw him two weeks ago.
Today he is clearly able to mouth words with many fricatives. Today
he was on a four-hour ventilator test, off the ventilator. His
breathing off the ventilator today is better than fully assisted two
weeks ago. The respiration tech came by to monitor the test and
discussed the possibility of removing the ventilator next week and
installing a voice box. It depends on his strength at the end of
these tests. The efforts to remove him from the ventilator last week
were premature. Neal quoted Clint Eastwood: "A man's got to know his
limitations." There is a plan next week to create a direct line into
his stomach and remove the feeding tube. When that is done he'll be
able to drink things. The occupational therapist came and did
range-of-motion exercises and commented on the huge improvement since
the last evaluation. Neal asked for his foam hand grenade on his desk
to exercise with. The head nurse on the floor came by and discussed
near-term plans. When Neal is off the ventilator he's already been
approved to be moved to the occupational therapy ICU, one floor up
from his current room. He's real pleased with his own progress, and
the hospital's plans.

-Lee

Update: Day 24

Second treatment of IVIG and we have finger movement! Though the treatment is not a silver bullet, it is a very positive move in the right direction. Not able to hold a pencil yet….but hopefully soon. It will make it so much easier for him to communicate.

Molly visited last night. She updated him on school and her after school activities. He’s always happy to hear how/what she has been doing.

Belinda

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).