Carries Chiari Connection

With the sad news of the passing of Chip from WACMA I have decided to add a new page to my website which will tell a story of someone with Chiari...whether it be good, bad, or indifferent.  Unfortunately, I have to begin this one on a very sad note:

With the permission of Chip's sister Ann Hood I am going to put Chips story and photo here.  Chips has been battling Liver disease and was waitng for a Liver transplant but lost his battle Thursday the 6th of November.  Here is his story told by his sis, Ann:

Chip was in the intensive care unit awaiting a liver transplant the past weeks.
A liver did not become available for him and the doctors informed us on Thursday
night that he had become too sick to receive a transplant.

Our family gathered lovingly around his bedside in prayer and love. We lovingly
helped him make his transition to heaven on Thursday evening.

Chip is now one of God's special angels in heaven.

Chip's goal was always to be there for his Chiari family, to be able to support
them in any way he could and to continue to "help more people" as his journey
progressed. I know that Chip, in his free spirit form, will continue to love
his WACMA family and he will be watching over us and loving us all and be there
for us. He made a special request that we do not mourn for him, or spend time
in sadness over his passing. He wanted to make sure that we celebrated his life
in joy and happiness, recalling the fun and wonderful times and memories while
he was on earth. As an angel, he will be with us and would hope that we
continue his mission of supporting other Chiarians and to continue creating
Chiari awareness in the world.

We ask that you keep all of our family in your prayers, especially Sandi as we
process our loss.

May you be blessed and love deeply.

Ann Hood
(Chip's BS)
Chiari Crusader

ALSO WRITTEN BY ANN HOOD:

I became a member of WACMA in 1996. This is a very long post, I wanted to tell some of WACMA history from my perspective as a long time member, and also to share with members a little bit about the website owner and our Chiari experiences for those who do not know us, and for those who are new to the WACMA site. I hope you enjoy it.

My story begins with my "little" brother, Chip Vierow. Chip is the current owner of the World Arnold Chiari Malformation Association website. WACMA has, for the last eleven years, existed solely to provide help and information to fellow Chiarians and Chip has been involved on the site since its inception and he has been devoted to helping others with Chiari and has worked tirelessly in those efforts. WACMA was owned by someone else at that initial stage and the site was launched a few weeks before Chip's decompression surgery, which was so timely! (Both the site launch of WACMA and Chip's surgery.)

Just prior to that, Chip and I vigorously searched for answers on the internet to what his "problem" was. His life was taking a medical turn for the worse and he definitely needed answers. The search had been frustrating, but of course, he could not stop searching, it became an obsession, really, both for him and for me. He was going downhill fast and he was only 36 years old. Neither the doctors or us had a clue what was causing his symptoms but they were becoming very serious.

I knew Chip was at a low point, so, being the loving sister that I am....one day I sent Chip a gift to cheer him up.

(It was slightly inappropriate perhaps for the circumstances of his seriously declining health, but I thought it was very funny, and the poster was bordering on insulting, hence, the perfect gift for him, my "little" brother). The gift was a poster. In the center of the poster was an X-ray of a skull, and in the center of the brain was the image of a very large pile of..."doggie doo doo". The caption on the poster was: "Your Problem is Obvious" LOL LOL

It was the perfect gift for the moment! His problem certainly was elusive, and definitely NOT obvious to us, and the poster said it all! When he received the poster, he responded in the way I knew I could count on, with a fantastic sense of humor...and we enjoyed the biggest laugh over it, and still do. The laughter we shared broke the tension we felt in not knowing what "this" was. Laughter continues to be a key component of how we deal with Chiari effectively. The Chiari condition was elusive and mysterious and it had already been a long journey of unsuccessful diagnosis' and of frustration. We still had no idea what he was dealing with and Chip's health continued to decline. Chip FINALLY had an mri, then he called me to say:

"I have CHIARI".......

and I said.......

"You have.......WHAT?!?!?"

Little did I know how much those words would change his life, and mine.

I went to our local library in 1996, where the only information I could find there on Chiari was in one "Book of Rare Conditions and Diseases". There were a couple of very brief paragraphs on Arnold Chiari Malformations. I recall that it mentioned how they were discovering Chiari Malformations in cadaver autopsy's on occasion and how the name Arnold Chiari Malformation came to be. It explained the herniation and descending of the cerebellar tonsils and that was pretty much it.

I can tell you it was not pleasant to read that short bit of information knowing that my brother had just been diagnosed with a Chiari 1 Malformation. Then to hear the words "Brain Surgery".....yikes! I needed some understanding, as there was some fear of the unknown raised up with those words, "Chiari" and "Brain Surgery".

Very shortly before Chip was scheduled for surgery, the WACMA site launched. What a blessing! We were able to call the phone numbers posted on the site and talk to Chiarians who had actually had the surgery. There were a few. We were able to get support and information through posting questions and we would get answers in return. How valuable that support was at that time. Maybe there were forty or so members......I don't remember the exact number, and maybe a half a dozen people who had posted their phone number and were willing to talk to you on the phone. It helped me greatly to have answers and gain some of that understanding about this "Chiari" that I had not even heard of before. Now, when I can offer some of that relief and give some knowledge to others I am very happy to do it, and I have continued the legacy of the original members, posting on the WACMA site over the last eleven years.

The internet research was tough eleven years ago. I recall numerous nights back and forth with the medical dictionary writing on the sides of articles the translation from the medical term to something I could understand. I would get through many pages and perhaps discover the article was going in another direction not so specific to Chiari and I would start in on deciphering the next paper to try and find anything I could on Chiari. Keep in mind also that we probably were using a dial up modem at 2400 baud with a 286PC to do searches. (Maybe that's not exactly right, but you get the idea...painstakingly slow, and maybe you had to wait overnight for your article if you actually tried to download something that might have a graph or photo on it :-)). Thinking back on these searches the limitations we had to overcome, I am so grateful today for high speed dsl and the internet technology that has developed in such a short time. Without it, we would not be where we are today; the largest Chiari support group online.

After his diagnosis, Chip was immediately scheduled for surgery and he had his posterior fossa decompression with duraplasty for a 22mm Chiari Malformation (as documented in "Chip's Excellent Adventure" on Chip's Chiari Page). The surgery was very successful. It was done by a neurosurgeon in Minnesota named Dr. Gaylan Rockswold. Posting on the WACMA site barely missed a beat. Later on in his fantastic recovery, Chip became owner of the WACMA site. I continued over the years as a member and posted on and off. I had to take a break sometimes as many of the stories were hard for me to deal with on a daily basis, particularly in the beginning. There were extremely long times for a diagnosis, frequent misdiagnosis (MS was a common theme), and hardly anyone's doctor even had heard of it before, and surgical techniques were not what they are today even if you could find a good neurosurgeon with Chiari experience.

Slowly but surely, information was gathered and shared. For me, this was very valuable and intriguing. What a condition to study! It was fascinating to me to learn about it and to talk with Chip about the findings. I had a personal interest in it as when Chip was diagnosed, I suspected I had Chiari too. Six long years later, due to migraine and depression issues, I finally had an mri specifically looking for Chiari as the culprit. By that time, not only had Chip been diagnosed and had his decompression surgery, but my younger brother and my mother had also been diagnosed, so there were now three out of four of us in my family that were diagnosed. Now I was certain I had it and I had waited for what seemed a long time (being a WACMA member), six years, to have confirmation of it. Finally, the doctor called me and explained the MRI and to report the findings. He called and said "You're fine", and "Your brain mri is unremarkable" and that was it.

WHAT!?!?! (That word "unremarkable" when referring to my brain really rubbed me the wrong way, too. ) I cried and was stunned and heartbroken..how could that be?, I wondered. It was an all too popular non-diagnosis, those two words....."You're fine". The other "popular" diagnosis being of course, "It's all in your head." For a patient to come in with a list an arm long of symptoms and complaints and then have to leave the doctor's office with the assurance that "You're fine" truly boggles the non-blonde, logical part of my slightly herniated brain. Of course the "It's all in your head" phrase is a gem that we can all appreciate. We laugh at that because, well, yep, it's certainly true in some respects, at least most of it is in our heads! Not forgetting that Chiari is also a big pain in the neck!

Something that is also a pain in the neck is how some doctors listen to their patients with Chiari. Sometimes the symptoms are ignored or dismissed and other times they are simply minimized. I recall a story of a man with drop attacks, explaining to his doctor his recurring plight of falling down on the cement sidewalk without intending to. The man was about age 42, I think. After his complaints of multiple drop attack instances the doc's comment was something like "Are you sure you didn't just TRIP?" Comments like these just floor me...as if a 40ish year old man wouldn't be able to tell the difference between a simple tripping incident, and regular and recurring drop attacks where his legs give out and he's kissing the pavement frequently! Again, it was mind boggling how that could be misunderstood and recorded in the doctor's mind as "trips occasionally, really, nothing to speak of".

After my doctor, who admittedly knew nothing about Chiari, said I didn't have it, well, I took the initiative to go get my mri report and the mri films thinking that he must be wrong, and there it was: "Low lying cerebellar tonsils below the level of the foramen magnum." I could also see it on the film. Chip reassured me......."You HAVE it!" so I felt confident and relieved that I finally knew for myself what I had suspected. Then sadness came; even though Chiari was what the doctor was specifically looking for, the doctor did not recognize the different terminology as describing a "small" Chiari Malformation. Just another "issue" that is an obstacle to proper diagnosis. I wondered how many others had simply been overlooked due to the term they had chosen to describe the condition....?

So, I used to almost get ecstatic when people said "Help! I have just been diagnosed with a Chiari 1 Malformation." At least they had been diagnosed. It was a HUGE step to get to a diagnosis for many people and the average time until diagnosis was extremely long and painstaking and required a ton of patience and persistence on the part of the patient. It was so obvious that more help was needed from the medical community and that they needed to improve in educating those who were involved with the diagnostic processes. We have made strides in Chiari awareness for patient support, however, there is much more work to be done also, in raising Chiari awareness within the medical community and we continue to work toward that goal.

On the patient side, I can't help but compare today the information and support that is available for a "newbie" that is recently diagnosed compared to the half page I found at the library eleven years ago. It is absolutely amazing to realize what changes have taken place. A newly diagnosed Chiarian today would be able to zip on the internet with high speed DSL and in seconds have access to more Chiari information and support than we might have found in months and months and months of tediously slow searches from other sources. Now there are MANY good, knowledgeable people that would respond to a post instantaneously and who would be able to answer their general questions. There are MANY who would be able to answer their specific questions about Chiari and also "Chiari-related" questions. This has been a result of many, many dedicated people in the Chiari community who unselfishly have donated their time and efforts over many years and who are willing to share what they know with others.

I am so thankful today. The goal of the dedicated people who have spent years dedicating themselves to helping Chiarians and to raise awareness is being accomplished, slowly but surely. It is clearly evident to me that we have been successful here at WACMA with our dedicated and caring members. Thank you all for what you have given me and for your support on the WACMA site to other Chiarians. You are an awesome group and I appreciate you all!

I especially want to thank my brother Chip. He has surprised and delighted me with his dedication to this group. He is a wealth of Chiari knowledge and doesn't hesitate to share that with others. He has made sure that we don't forget to have a sense of humor. He encouraged me and taught me the value of positive thinking, even though I am his big sister AND blonde (reference "my" photo the WACMA photo album...hmmm, sort of looks like Jessica Simpson, eh?). He has been an inspiration to me through my Chiari journey. I'm extremely happy and I feel fortunate that we are on this journey together. We certainly have come a long way in our personal journey together as well.

I was proud that WACMA was credited with helping Gayle Irwin find information about Chiari which led Marissa Irwin to get help. She was featured in the Mystery Diagnosis show on Discovery Health on Chiari, along with Dr. B and the Chiari Institute. Julie Carter, who was recently featured on "Extreme Home Makeover" is a WACMA friend who started her own group after moving to Montana. She was blessed with a new home, the fruits of her seed that was sown to help others. Our membership supported her application to the show. Kathleen and Sally who founded Chiari Connection International were moderators here at WACMA and have started their own group to continue to serve other Chiarians. Wishes and Rainbows organization was founded by Sharon Greenwell, a WACMA member, who started her non-profit organization to help Chiarians get to good doctors and to find help. We regularly support Wishes and Rainbows and hope you will donate some last minute $$$ to keep the Santa Smiles program alive this year at www.wishesandrainbows.org <https://weboutlook.flamingohood.com/exchweb/bin/redir.asp?URL=http://www.wishesandrainbows.org/> . Bless you, my friends.

Rachelle Briant, the author of "The Angel Within Me" is a friend of ours and also a WACMA member who wrote her story about her Chiari journey to help others. She is an angel! There is a spiritual connection here at WACMA, I see it in the miracles that happen and feel it in the love that is shared between all of us. The Angel Within Me is a great story. Ray (Raphael) D'Alonzo, the author of "Contents Under Pressure" is our friend who wrote his story about his Chiari journey to help others. He first posted in 2005 on the WACMA site in search of pledges for a marathon he was running. He beat his target time and had sponsorship of over $ 2,000.00 for Conquer Chiari, another non-profit group helping Chiarians. We promote both of the great Chiari books and highly recommend them for everyone, they are both helpful and inspiring stories and I hope you get the opportunity to read them and share them with others.

I love to see the WACMA spirit blossom and being spread out into the world and seeing a great purpose being fulfilled. It has been such a privilege to be a part of WACMA and it's growth. What started at about 40 people has now grown to over 6,000 U.S. and international members and we get many new members daily from all over the world. I also thank God for having wonderful moderators that have made great contributions to supporting WACMA, and have been an essential part of it's growth. We have always had excellent staff that were also extremely dedicated and committed to helping people. Thank you all.

Currently, Sandi, Michelle, and Michelle are the moderators, and I am privileged to be able to call you friends. Thank you also to Bernie, one of the original WACMA members whose presence here has helped keep us sane over the years. Sandi, our "CPA" (Chip's Personal Assistant) deserves extra merit for her contributions in helping Chip. Sandi, you have been invaluable to me in many respects, and courageous, among many other "special" qualities that it takes to be around him. (I don't know how you can show your face in Wal Mart after Chip's famous Bill Murray impression in the golf department when he was performing perfectly, "The Cinderella Story" lines from Caddyshack!)

Both Michelle's have children and fulfill moderator responsibilities as well and I commend them. They are special Chiari moms; moms that deal with Chiari themselves and moms that deal with kids with Chiari, each have their challenges. Bless all of our Chiari moms. My mom has Chiari, I have Chiari, and my daughter has Chiari. Chiari affects women more than men and many of our members can relate to the special needs of Chiari where women are concerned. To have the kind of support that is available here on an emotional and spiritual level with the love and caring that is shown to others is remarkable, rare, and awesome! Add to that the largest information pool about Chiari as far as membership numbers and support. What a benefit to have the wide variety of experiences and personal knowledge of Chiari that exists in the WACMA group!

Besides my mom and my daughter, my two younger brothers, Chip and Mark also have Chiari. In spite of the "odds", we are a 100% Chiari family and when the frequently asked question comes up....."Is Chiari genetic?", we respond with a big smile and say..."perhaps" :-) One of my favorite lines of Chip's is: "Someone must have pee'd in our gene pool"......and..something Chip says causes another outburst of laughter, something we REALLY promote here at WACMA ....and in our personal lives. But watch out for the uncontrollable laughing fits! Yesterday, I thought Chip was going to have to go to the hospital from laughing so hard. But I told him, it might be appropriate if on your tombstone it said: "He died laughing"....LOL LOL Thanks for the laughs, Chip. Your special brand of anti-depressant laughter therapy works for me!

Thanks, too, Chip for making WACMA a wonderful site; your computer skills and management of the site is awesome and I hope that all the members will take full advantage of the information that is available here with the largest archives of messages and the largest membership support group available for Chiarians.

I also want to thank Chip for the Chiari Pillow. I feel that it represents some of the fruit of the spirit of WACMA. We have been so blessed to see that we have helped make a positive difference in people's lives and to witness that others are continuing that legacy. It is not hard to describe being a long time member of WACMA, it's amazing and miraculous. To see that you can help someone in their Chiari journey and then they turn around and help someone else in their journey and then they turn around and help someone is truly inspiring on many levels. To witness everyone freely giving of themselves and their time and talents to help others is simply pure joy. It is the real fruit of the spirit. Love thy neighbor as thyself is a daily ritual of sharing and giving hope and information and love here and it is uplifting and humbling to see those words put into action.

When Chip was thinking about how he could help even more people, the idea of the Chiari Pillow was born. Chip and Dr. B, a world renowned Chiari expert and top Chiari neurosurgeon, and members of the WACMA group, and Mike, the big brains of the pillow business, all brainstormed and worked together to create a tangible product specifically designed for Chiari patients and specifically to serve the needs of Chiarians. All good forces came together in harmony and the Chiari Pillow emerged. It is a wonderful testimony, and more fruit that grew from the seeds of hard work and dedication and commitment to making life better for Chiarians.

I pray that everyone can have the "heavenly" feeling that the members who have tried the Chiari Pillow are reporting. It is getting such great reviews that the manufacturer is having a hard time believing it. ALL responses have been positive. The countless revisions and testing that the Chiari Pillow was subjected to has really paid off. I love the idea that the product that came to life in Chip's mind and now, for real, is a pillow. It is comforting and supportive. It helps you sleep better. You can cuddle it and hold it and hug it. It feels good. You can cry on it and spill your lovely beverages on it. Then you can wash it and dry it and take it with you "wherever you go". It survives and flourishes and lasts. It's flexible. It keeps it's "cool". It's there for you when you need relief and rest and calm (or you can have a pillow fight with your little brother or smother him with it!). Actually, the benefits remind me a lot of the benefits of WACMA..comforting and supportive, helps you sleep :-), you can e-hug it, it feels good, etc. And it's there for you when you need it.

Bob and Doug of "Strange Brew" movie fame would say: "So that's the beauty of it, eh?"

Bill Murray would say: "It's a Cinderella Story..."

Chip would say......"So, the Chiari Pillow and WACMA....it's got all that goin' for it then."

....and "Even my sploot dog, Sadie, likes my Chiari Pillow."

The Chiari Pillow as a product is a great fit with our mission: to make a positive difference in people's lives. It is a unique expression of how we care for others and want to make life easier and better in all ways that we can and know how to. I hope that it is apparent in looking back at WACMA history that we truly do care and I hope you feel good about belonging to WACMA even more now that you know a little more about where we have come from.

Personally, I ask for your prayers and support in making the Chiari Pillow a real blessing for all Chiarians. I believe that the Chiari Pillow has a lot of potential to help many people and I hope to see that happen. I believe that it will have a unique impact on the Chiari Community and further, it will help raise additional Chiari Awareness. I think it has it's own special mission to help us, and others, to heal and to feel better on a daily basis. I hope that you will all support that mission as we move forward on our Chiari journey at WACMA. I expect that everyone here will be able at this time to harvest some of the fruit from the seeds we have sown over the last eleven years in the benefits of membership to WACMA. I hope that includes being able to "sleep in heavenly peace" with a Chiari Pillow!

I also want to say that it is a privilege to belong to a group where all are welcome. Every Chiari sister and brother and every global sister and brother may join and experience wonderful benefits together. Not only do we focus on Arnold Chiari Malformations, but we emphasize "World" and "Association" and it's a great opportunity for the group to make a positive difference in people's lives in other parts of the world.

I feel strongly about the benefits about positive thinking in assisting us deal with Chiari more effectively. It seems that research on the brain confirms that positive thinking is good for us. Whenever science and the Bible seem to be saying the same things, I think it is worth noting: "Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things." Phillipians 4:8

For those of you who might be tempted to criticize my post for it's "self promoting sales" content, or for other reasons, I say this:

Remember that I have access to the "banned member" button!! LOL LOL (I am my brother's sister). I'm teasing, I can handle the criticism, I look at it as "feedback" and something that helps in my growth. If you do want to send criticism of this post, kindly put "Criticism of your post" in the subject of your email so that I can properly address it.

Some financial information about WACMA you may not be aware of:

I just wanted to say that we have all volunteered here and that no one has ever been paid to be a part of WACMA, including Chip. We charge no dues for membership, allowing free access to all information that has been made available for everyone and the opportunity to learn what they can by sharing information among members. I'm proud of that accomplishment and for the last eleven years WACMA has been self-supporting, meaning Chip was responsible for the bills and expenses of operation of the site. We are not sponsored by anyone so there are no incoming funds to WACMA and we owe no debt financially as an association.

Finally, again, thank you to ALL those who have helped make WACMA what it is today and for supporting Chiarians in their various struggles and for furthering Chiari awareness in any way you feel inspired to do. It is a new day dawning upon us. We share a common ground and we are in this together. And together....we ARE making a difference in the World, at least from my unique perspective.

Ann Hood

Chiari Crusader

Chip's Big Sis

WACMA Moderator

Brain Surgery, Day 1- Oct 15th 1996

11:00 am I arrive at the hospital. 15 minutes later I'm in the pre-op room getting weighed and having my blood pressure checked. They inventoried my personal belongings (which were a pair of sweat pants and shirt, shoes and socks) and I changed into a hospital gown and a pair of white "nylons". They are used to prevent pooling of blood in the legs or something.. They asked if I had any questions about the surgery and I did not, so they let my family come in and wait with me. Just a few minutes later the anesthesiologists came in and explained that they were going to hook me up with a couple of I-V lines. They were very nice guys and answered all kinds of questions from my family and friends. The I-V lines are in now and I'm starting to feel something.. my brother comments "You're buzzin". That's the last I remember pre-op.

Sometime around 7 pm: I wake up with a nurse at my side. She tells me "You are out of surgery and everything went very well." Then she asks "Can you tell me your name ?"  I answer "chip".  She just looked at me and started writing something , so I ask her "Was that right ?"  She laughs and says yes. I remember very little about the post-op room other than I started to feel sick, so I told the nurse. She gave me a shot and I felt better quickly. By the way, the nurse has nothing else to do but watch your vital signs and ask you how you are feeling. You feel very secure. That, and you are doped out of your gourd.

About 9:30 pm: Transport to surgical intensive care. It's routine, meaning everyone who comes out of this surgery goes there. It's a comfortable room, dimly lit, with all kinds of meters, monitors, gauges and stuff like like that. It's like a NASA control room, and you are the astronaut. You *think* you know what's going on at this point.. but you don't. You're still doped. More doped than Cheech and Chong at a Rolling Stones concert. A few minutes pass and they tell me my family is coming in to see me for a minute. They come in and they have that look on their faces,  like.."we are scared, but we love you so we'll try to smile to make you feel better". I'm doing the same thing, but I'm *not* scared (remember, I'm doped). They tell me that the surgeon updated them 3 times during the surgery, and that he gave them some pictures of the surgery when he came out and talked with them. I don't remember that much about the visit other than it was good, and my family left for the night and my friend (who is also a nurse) Meg stayed there with me all night. The idea was that she'd stay until I fell asleep, which never happened that night..

11:00 pm. Alarms are going off and I'm drowsy and don't understand what's happening. The nurse resets the stuff and says "try to get some sleep". OK.

11:15 Alarms are going off again. Meg explains "Your OX Sat level is dropping way down (80 and lower) as soon as you start to fall asleep". IE: I stop breathing, my oxygen level drops to dangerous levels and the alarm goes off.

11:30 Same thing. I start to fall asleep, stop breathing, the alarm goes off and I'm awake again.

11:50 Same thing. This is getting old. It happens all night long.

End of day 1- a.k.a. Chips Excellent Adventure

Day 2 - Oct 16th

12:30 am - They keep close watch on me, and continually come in to wipe my face with a cool damp cloth. The intensive care unit must be kept at somewhere around 72-3 degrees (?) because it's noticeably warmer than I am used to. (I'm a Minnesota boy)   All through the night they keep me comfortable. Once in a while they give me a small chunk of ice to suck on. It's a treat in a way- it's been 24 hours + since I've had anything at all to eat. I'm not really feeling hungry, but that little chunk of ice hits the spot.

4:00 am - The nurse says that I can have a sponge bath now since I'm not sleeping anyway. Meg (also an ICU nurse) offers to do it and the nurse accepts the offer. It only takes about 3 minutes and it felt good, especially on my back.

5:00 am - The nurse asks me if I want to try some apple juice. Yep, I do. I'm feeling pretty good. I ask if having the apple juice will disqualify me for the ice chunks. She assures me that I can still have ice chunks, and brings me a small container of apple juice and a whole bowl of ice chunks.

6:00 am - The nurse asks if I want to try something "a little more solid" and I do. I'm feeling hungry now. I suggest a pizza and some Mountain Dew. I get a small yellow blob of Jell-O. Close enough. As I eat it I notice that I don't have the urge to cough like I used to. I must be swallowing better. I finish the Jell-O with no coughing. This is a major improvement.

7:30 am - Dr. Rockswold, the neurosurgeon stops in with a smile on his face. The nurse had told him that I was not coughing anymore and that the tingling and stiffness in my hands was much better. We chat for about 10 minutes and he has me do a small battery of motor skills tests. They seemed easy. He says he'll get me out of intensive care if it's OK with me. That would be additional progress, and I'm all for that. "Yeah, I'm ready to move on." He smiles and winks as he walks out the door and I hear him say to the nurse "He's doing fine, let's move him to a bed on 53." 10 hours in intensive care and they are ready to cut me loose. The doctor had previously stated that I'd be in IC for 24 hours. I must be doing better than average, I think.

8:30 am - My Mom is here now and relieves Meg from watch. Meg will now go home to sleep after about 22 hours of being there with me.

9:00 am - The nurse tells me that we are waiting for an open bed at station 53. It will be around noon, and they'll transport me by wheelchair rather than bed. She tells me that they'll be able to unhook the IV in my left arm and the heart monitor too. That leaves me with an IV in my right arm and a pulse-oxygen clip on my left pointer finger.

10:30 am - The nurse asks if I'd like to try getting out of bed and sitting in a lazy-boy type chair. Yes. I haven't even sat up yet and that would feel good.

10:35 am - I move to the chair, but when I do my head starts pounding and now I'm in pain. A bit more than I like... The nurse asks if I want to move back to the bed. No, I don't want to move at all. It hurts to move! She injects some pain killer into my IV line and it's better within a couple of minutes. Ouch. I hate it when that happens.

12:00 noon - The nurse tells me that we'll be leaving for station 53 in just a little bit. It's a long trip, all the way to the other end of the hospital which takes up about 3 city blocks. My head is starting to hurt again, and I ask if I can get some more pain killer right before the trip. Yes, she says, and gives me a pill this time. It's Percocet (whatever that is).

1:00 We make the trip via wheelchair to station 53. I have an IV in tow and a blanket on. It's just as hot in the hallways as it was in ICU and I don't need the blanket, but it stays on anyway. My Mom laughs because my butt is exposed when the nurse is not directly behind me. I joke about getting arrested for indecent exposure.

3:00 pm- I'm in my new room now, and this one is a double room. It looks like I may have a roommate soon, but right now it's just me in here. I have a phone now too, so I call a couple of my friends. They are surprised that I'm calling them the day after brain surgery and are very glad to hear how things are going. I encourage them to stay home for now and visit me another day or when I get home. I'm tired.

3:45 pm - I go for a walk down the hall of station 53, with a nurse at my arm. I'm not 100 % sure why she's holding on to me the way she is because with her 110 lb. frame and my 210 lb. frame... if I fall, she'll just fall with me :) Even as tired as I am, I can tell that my balance is better. More progress.

4:30 pm - I get a few visitors and right at that time the pain gets worse. I request more meds and get them, but it takes a half hour or so before they start to work, and my visitors (family and close friends) have to see me in misery for a while. Poor timing.

6:00 pm - Supper comes. Soup, mashed potatoes, vanilla ice cream and milk. I eat the soup, but am more tired than hungry so I try to sleep. When I do start to doze off, the oxygen saturation thing goes off again. (It's actually called a pulse-oximeter) This happens about very 15 minutes for the next 2 hours. I guess I'm still not breathing when I fall asleep. I'm frustrated about the whole thing because I'm REALLY tired of the sound of the alarm going off. I want to toss the thing out the window.

8:30 pm - There is talk of a roommate coming into my room.

9:00 pm - I am transported to a private room, presumably because my oxygen alarm keeps going off. It's bad enough that I can't sleep and they don't want to keep another patient up all night either. I move down the hall.

10:00 pm- I go for another walk down the hall, this time about twice as far as the first. I feel like I could handle it by myself, but the nurse wants to escort me. OK. More progress. Tomorrow I can walk alone.

11:30 pm - I've watched a little TV and am going to try (once again) to sleep. Wish me luck, I haven't slept in 40 hours.

End of day 2- a.k.a. Chips Excellent Adventure

Day 3 - Oct 17th

I spend much of day 3 trying to get some sleep, with little success. I fall asleep for a few minutes and (as usual) the oxygen alarm goes off and wakes me up. In between trying to sleep and going for short walks up and down the hall, a respiratory specialist stops in and fits me with a small oxygen mask, to pump oxygen into me while I try to sleep. It's extremely uncomfortable having this thing on, and I ask "Do I have to wear this thing ?"  The guy answers "Breathing is not optional."   I'm really tired and I think "I wonder how long it took him to come up with that one". It's going on 72 hours without significant sleep. I am noticing that my balance is much better, and I am able to swallow solid foods with no coughing or choking. More progress !

Day 4 - Oct 18th

I am breathing much better and walking up and down the hall by myself. I even slept for much of the night. I feel pretty good other than the pain in the back of my head. They want to keep an eye on me for one more day to be sure that I will continue breathing when I fall asleep. I guess I can understand that.   If all goes well for another day the doctor says they'll send me home.

Day 5 - Oct 19th

All does go well, and next thing I know I am at home typing this recollection of my adventure. It feels great to be home and I'm really looking forward to sleeping in my own bed. Life is good ! If you've read this far, don't stop now. There's much more to learn, and things get even better!

© Chip Vierow (copied with Ann Hood's permission Nov 9, 2008)