7:00 P.M. EDT - NEUROLOGICAL CARE UNIT

Kelly has had a better afternoon. She has eaten small bites of grilled cheeze, some soup and some apple sauce. She has been taken off the pain medicine pump and transitioned to pills. This has resulted in increasing her blood pressure back to normal, and elimating some of the dizziness and nausea she was experiencing. She has sat up several times today and walked about 30 yards or so. This afternoon I also learned that they didn't remove the portion of her brain that controls her temper, but that is another story.

We have learned there are seven other Chiari patients here at the hospital. I met the husband of a woman who had the surgery the day before Kelly had hers. He only had positive things to say about The Chiairi Institute and the doctors here.

SATURDAY 10:30 A.M. - STILL IN NEUROLOGY CARE UNIT

It was a long night for both Kelly and I last night. They told me the icu didn't allow visitors after 8:00 p.m., but they couldn't find anyone willing to try to forcibly remove me from the room, so I stayed in a chair in Kelly's ICU room last night. Kelly is still in a lot of pain. The pain management group says that the Chiari surgery is very painful due to the neurological impact of the procedure.

Her blood pressure is slightly lower than normal, so the blood pressure alarm was going "bong...bong....bong" all night long. Between that and an army of Doctors, Nurses, Pain managers, Housekeepers, Food Providers, Trash Collectors, Linen Changers and Administrators, there was no sleep for either of us.

She ate 2 spoons of broth, 1 spoon of yummy cherry jello, and a half of a cracker this morning. She got out of bed and sat in a chair for that meal. We then disconnected her from all her wires and tubes and took her for a 12 step walk. She is more alert, talking better and looking stronger this morning. Progressing on schedule.

STILL IN NEUROLOGY CARE ROOM - 6:00 P.M.

Kelly ate a few spoons of broth, some jello, and a little orange sherbert. Then she tried to get out of bed and sit in a chair for the second time....and lets just say that she now has an empty stomach again. She is doing some stretching exercises for her neck by moving her chin from one shoulder to another. This is more difficult than it sounds due to the swelling from the surgery and the sensitivity of the muscles in the neck, but she already has much better movement of her head than she had this morning. She is still in a lot of pain. Doctor B came by on his rounds and said she was doing well.

STILL IN NEUROLOGY CARE ROOM - 2:00 P.M.

We got Kelly out of bed and into a chair, which was a big accomplishment. She is now asking for ice chips and broth which is good.

KELLY IN NEUROLOGICAL CARE UNIT - 10 A.M.

Kelly had a long night in the recovery room. They poked and prodded and wouldn't let her sleep, so she is a bit grumpy this morning. When I asked her how she was feeling just now, she said "my head hurts". She is giving the nurses a hard time and staying on top of them. She is about to try to sit up so we'll see how that goes. All's well so far.

FRIDAY MORNING - 8:00 A.M. EDT

Sorry, nothing new yet. They didn't allow visitors all night. Now they are moving her from the recovery room to the Neurological care room. We should be able to see her within the next hour of so.

KELLY STILL IN RECOVERY - 8:00 P.M. EDT

I just got to see Kelly again. She is still heavily medicated and groggy, but she looks good. She spoke to me (ok, mumbled is probably a better description) for about 30 minutes. She is in good spirits and has quite a peace about the surgery which she is attributing to a lot of prayer. I was just told that she will be in the recovery room under constant supervision until tomorrow morning when she should be moved to a Neurological Care Room (kind of like a private room for neurological intensive care patients). I will not be able to see her again until tomorrow morning.

Thanks again for all your prayers.

Charlie

Hi Mom and Dad,

I "hacked" the blog so I could say I love you.

Love You,

Landon

KELLY IN RECOVERY - 5:00 EDT

Marilyn and I finally got to see Kelly (only for 5 minutes) in the recovery room. She is looking and sounding great. Even though still heavily drugged, groggy, and barely able to speak, she wanted to know how the surgery went and reminded me that I needed to be taking lots of notes. She also reminded me to call some people to update them on her status. She also mumbled "spelling test tomorrow" to remind me that one of the kids (I don't even remember which one) has a test tomorrow. When I told Kelly about all the notes, calls, and prayers, she said to tell everyone she loves them.

Staying in normal form, Kelly also mumbled "can you move me away from this chick next to me". The lady happened to be a loud New Yorker who had some type of bowel surgery and Kelly could hear her talking through the curtain. Marilyn responded with "they're going to move you to a room soon", which momentarily satisfied Kelly. But then, the recovery nurse blurts out, "sorry, we have to keep her in recovery until tomorrow morning to monitor her". I don't know how Kelly heard or processed this conversation since she was really out of it....but she mumbled, "oh no, just shoot me now". I'm sure that most of you can hear Kelly saying this.

We will be able to see her once again at 7:30 p.m. tonight for a short time. Then we won't be able to see her until tomorrow morning.

Please keep the prayers coming, praying for a speedy recovery, no infections and that she doesn't pull the plug on the poor New Yorker recovering next to her.

Charlie

TECHNICAL DETAILS OF THE SURGERY

Now, for those of you interested in some of the technical details of the surgery.... They were able to create the space in her skull that she needs by removing about 2 square inches of skull on the back of her head. They removed a little more skull than they planned in order to be able to access some portions of her Dura (brain covering) that needed some repair. They also removed a portion of the C1 vertebrate, as well as just a small amount of the C2(less than they had planned). The doctor indicated that instability (due to the removal of these vertebrates) should not be a problem. He indicated that Kelly's skull was quite thin, due to the constant pressure and bone erosion caused by the clogging of the brain and the brain stem, but followed up by saying this should not create any specific problems.

Additionally, they repaired 7 small holes in her dura that were also caused by pressure and erosion. The erosion (to both the skull and the dura) was caused by trying to squeeze the CSF fluid though very small spaces in the skull for all these years.

The length of her brain herniation was significant, 27 mm on one side and 22 mm on the other. Additionally, the fourth ventrical of her brain had been pushed down almost an inch which is also quite notable. That puts her in the 94th percentile of patients they have seen (this portion of the brain should not be pushed down out of the skull). However, that issue by itself doesn't necessarily mean there will be neuroligical symptions. Kelly has previously mentioned a potential follow-up surgery called a tethered cord surgery which might also help this. But, the doctor wants to give her a few months to determine if there are any more symptoms from the fourth ventricle being so low, but he is optimistic.

They shrunk the herniations that were hanging down (like fying bacon the doctor says) and inproved the CSF flow dramatically as a result. The doctor has indicated that Kelly doesn't use this portion of the brain for anything.

We have not seen her yet, but should soon. She will be in the recovery room for a while, and will move into a special room - neurological intensive care- for a couple of days. After that she will move into a regular hospital room for about 3 days. Then we'll see how she is doing and whether she needs to move into the off-site location here by the hospital.

I will post again once we see her in recovery room.
Charlie

SURGERY OVER - GOOD RESULTS

We just spoke to Dr. M about Kelly's surgery. As a reminder, the objectivews of this surgery were primarily 1) to make more room in her skull, 2) to shrink the tonsillar herniations that were putting pressure on the brain stem, and 3) restore the circulation of the Cerebral Spinal Fluid (CSF) in the brain. The good news is that all three objectives were met and Kelly has done well during the surgery.

More technical details to follow.

MORNING OF THE SURGERY - 7:00 a.m.

Hello everyone,

Well, Kelly was smiling and in good spirits as she went into the surgery room. It will take a couple of hours just for the preparation time. The surgery will start around 9:00 a.m. EDT. It is expected to take several hours. We really appreciate all your prayers. We won't know much about how the surgery went until around 3:00 p.m. today, but I'll keep you posted if anything new develops.

Charlie

NIGHT BEFORE SURGERY

It is the night before the surgery. Mom and I were up at 5:00 to start the day. Several comments that were made throughout the day made me even more comfortable about being here.

First, on the way to our testing (MRI, X-rays, etc.) our cab driver told us that his daughter had surgery for Arnold Chiari years ago BEFORE TCI was established. He has meet approximately 40 patients over the past few years with ACM. He said that every single one of them has had nothing but good things to say about TCI. Listening to him share stories about how bad off these people were confirmed my decision NOT to have surgery locally.

At noon, we went to the hospital for pre-surgical testing. The nurse was surprised that I didn't take medications on a regular basis. She said most people with what I have are on several medications. Then she said that out of all the people she has seen with Chiari I was in the best condition. She stated that most are "really messed up" when they get to New York. We were there for about 1 1/2 hours. They asked a panel of questions, took my blood, and performed a electrocardiogram.

I spent the next 3 hours at TCI. Dr. S meet with me for over an hour. He was very informative. He stated that the amount of pannus formation was significant and further explained in detail the potential dangers of basilar impression and retroflexed odontoid. After talking to him it did confirm that surgery is the best alternative at this point in time. Then, Dr. V spent a very long time discussing the surgery tomorrow. I was very disappointed that I didn't get to talk to Dr. B. Dr. V told me that my herniation was the longest that he had ever seen. I was really surprised by that... Previously, Dr. B told me that I would have Invasive Cervical Traction while I was here and then Tethered Cord Surgery in a couple of months after I was decompressed. However, Dr. V told me that he thinks I should adopt a "wait and see" approach. Sounds great to me....but I would like to discuss this with Dr. B if possible. Dr. V and S explained to me why they think I should adopt a "wait to see" approach to the tethered cord and craniocervical instability surgeries. I really, really was impressed with both of these doctors.

All three of us were pretty comfortable about everything when we left TCI tonight. When Dr. V mentioned mortality rates I specifically asked what TCI's rate was...0%! That made me feel great. I feel SO MUCH BETTER. Also, even though my brain herniation is so severe, the part that they are going to "fry" is not important...good. Also, the rate of dura leak is .2% here compared with a MUCH, MUCH higher rate at other hospitals. I will have NO STAPLES. That is a nice surprise! Also, Dr. B and Dr. M pioneered some cool procedure to detect leaks. (NOTE TO FRIENDS: As I am writing this, Charlie is sleeping. I am looking at his notes from the discussion to provided more details about what the surgeon stated. I found NO notes from the discussion from the surgeon, but Charlie did write down the name of the steak restaurant that the surgeon recommended for dinner tonight!! Burton and Doyes in case anyone is interested!)

HAIR LOSS: As you know...huge concern for me...ha/ha. I was told to go and fix my hair one last time because tomorrow a bunch of it was going to be gone! He explained that they will take a section from the upper part of my head and form a patch over my dura. So, that is why they are going to shave so much hair. Again, no notes from Charlie so I can't be specific. In summary, they do not use human cadaveric pericadium or bovine pericardium. This is good news for my health, not for my hair.

The most surprising new of the day: Charlie actually talked my mother into having a pedicure! It was the best part of the day! The weather was incredible. We had a great meal tonight under the stars to celebrate. At this point, I am so comfortable with the decisions made thus far to get us to this point. Had I decided to have surgery 4 years ago, the surgery would have been competely different. So much has changed in the past few years. They have performed literally hundreds of surgeries since then and altered the approach (for people that have ACM, RO, and BI). I have this unexplainable peace right now. I know that I have literally dozens of people praying for me this week. The peace I have right now could only come from above. Thank you so much for your prayers.

Much love, Kelly

PS. I know that I have received several calls, and would love to return the calls right now because I am NOT TIRED AT ALL since I consumed a bucket of tea tonight. However...Charlie and Mom are asleep so I can't make any phone calls. Please forgive me. I have to be at the hospital early, so we are getting up at 4:15. Please feel free to call mom or Charlie as much as you want tomorrow. I love you all....