8-13

Today is August 13th; it's my mom's birthday. My goal for the day was to make the complete focus my mom's 66th birthday, and not waste time dwelling on the fact that this day also marks three years since the brain surgery that changed her in such a way that she'd never be the same as she once was. Three years ago today, when I hugged and kissed her good-bye at the double doors leading into the surgical wing, I prayed it wouldn't be the last time I saw her alive. I am thankful today that my prayers came true, and that I have been able to celebrate her last three birthdays with her, and have her in my life during all of the time in between. It has taken a lot for me to be able to see it that way. I spent the first 3 months or so in shock waiting for her to wake up, and then the next 9 months waiting for her to get better. I kept a journal of everything she was missing to one day share with her when she finally "came to". By year two I started to get nervous and went trough a very angry phase, mixed with a lot of denial. I wanted to sue every doctor that ever laid a hand on her, and I cursed the day I took her to see her surgeon when she made her decision. I was overwhelmed with GUILT, because I was the one who took her to her pre-op appointments and I regretted not forcing her to get a second opinion. The day of my surgery, when I had to part ways at the double doors, my mind flashed to when I shared that all too similar moment with my mom. So not only did I pray that I would see them again, but I also prayed that they would see the same me, and that I would be the same me, as I'm sure my aunt and Kerry prayed also.

But today was a good day, the best birthday of the last four. The kids and I spent a few hours at my parents house, and we were pleasantly surprised by a visit from my grandparents, and I have to say, it had been a while since we had all been together, and it was really relaxing and comfortable, like old times. We sat around the kitchen table telling stories, of course I had already heard the majority of them several times as it goes with the older folks, but you gotta love hearing them over and over, and I was happy to hear them again :)

After my grandparents left, the kids went to play with my old toys in the lower level, and my parents and I were left at the table; I was consumed with nostalgia. My mom kept looking at and touching the photo we had given her in the mosaic frame we had made for her. When she caught me looking at her, she smiled, embarrassed, and said, "I just really like it." I mentally patted myself on the back, not for scoring points, but for getting an emotional reaction out of her...it doesn't happen often. But later, Kerry's card arrived, and when she opended it, we were all rather surprised to see something that we hadn't seen in about 20 years: a homemade card to my mom from her baby girl. She opened it gingerly and took in every detail, and I swear I saw a tear in her eye after she closed it. Today really was an amazing day.

Later, I told them about the things I had done with the kids all summer, and that we were finally taking them to Six Flags next Friday. We reminisced about the times we went when Kerry and I were kids, once every summer, it was my favorite day of the year, right up there with Christmas. I kid you not though, that whatever day we picked, it rained, and we were forced to buy those silly yellow panchos. One year, 1986 I believe, it rained so badly, we didn't even make it to the park. The rain was coming down so badly with torrential downpours everywhere, yet my dad insisted on giving it a go, and we headed for Great America, only to be forced to head back home due to roads being closed because of the flooding. When we got home, on the street just west of ours, there were people riding in canoes. I remember being so disappointed that our adventure was cancelled, but I knew there were people in the world with MUCH worse things going on, so I tried not to show it. I promised my parents I would take a ton of photos next Friday, not like I'll be going on the rides quite yet, but they seemed anxious to see how things have changed. And if it rains, we will deal with it just fine.

I just hope the panchos aren't still bright yellow :)

Long time no post

I'm sorry it's been so long! But I'm glad to say that I've been really busy living my life headache free :) I've gotten more than a few emails asking how I'm doing and if I was planning to update the Blog, and I have been meaning to, so here I am...

I had my 4 week post-op appointment this past week, which involved an MRI and a visit to my surgeon, and he told me I'm healing beautifully. The biggest worry was fluid leakage, which occurs in about 20% of the surgeries and requires the surgery to be redone, but luckily that's not the case! Also, most Chiari patients report suffering from headaches after the surgery, but I have not had any headaches! It has been unbelievable; I never anticipated such remarkable results.

My incision is healing well and the scar isn't too noticable. My hair is growing back quickly also. I have to say, and if you've ever shaved your head maybe you know this, but man does it itch when your hair grows back! Or maybe it was because of the stitches and the incision, but it doesn't hurt too much anymore. I still have neck stiffness and some pain, so I'm taking flexeril and vicodin pretty regularly, but other than that, I'm feeling like a new person and loving it!

I've been BUSY BUSY BUSY doing a ton of things I never thought I'd feel well enough to be doing. I'm taking a grad class through NIU in Naperville and was actually well enough to go to class on 6/23 and stay for 4 hours, 9 days after surgery! I was alert, paying attention, participating, and I even drove myself there (the campus is close to my house). We've been busy w/ Reagan's swim team, Charlie's t-ball, going to the pool, visiting my parents, and hitting the library about twice a week. The kids have been extremely understanding and patient with my limits. We took them to the festival in Arlington Heights over the 4th, and my sister Kerry was nice enough to take Reagan on all the rides since I couldn't (although she loved it too). I was so happy to be able to go with Mike to NY for a family wedding with his kids. Before the surgery I had no idea how I would be feeling or if I'd be able to go, but we stayed positive and he got me a ticket, I got a dress and we just planned that I'd go, and if not, then no big deal. But I would have been crushed if I would have had to have missed it, and not only did I feel well enough to go on the trip, I felt great all weekend! I was able to go to the gym with his mom, dance at the wedding, walk all over Central Park, and we had a great trip :)

What started off as a most difficult, painful summer as progressed into one of the best I can remember. And it's not over; that's the great part. We still have Reagan's birthday, many more days at the pool, Lolla, many other August birthdays... lots to celebrate and be thankful for!

What's it like to have brain surgery?

A friend told me that they though in all honesty that the Blog seemed a little over the top, and that they would never put so much personal information on the Internet, but maybe that's because they are just a more private person. I can respect that point of view, but I don't consider this as me putting a bunch of personal info on the Internet. OK, I know I am, but the Internet isn't what it used to be. You can find everything in print, audio and video media on the Internet, so what's the difference? Granted, this isn't a published New York Times best selling autobiography you're reading here, but for me, if I'm going to take the time to write something for others to read, I might as well make it worth reading. Some of those autobiographies that have been bestsellers had their success for being completely honest, with raw details and vivid descriptions.

So...I have neglected to tell you about the surgery itself. Obviously, and thankfully, I have no recollection of the actual surgery, but I do recall the moments before and everything after. I made it a point to remember the O.R. because I wanted to write about it. But let's back up a little before that to when I arrived at the hospital.

We stood in line as a few other patients had arrived at the same time. I looked at older couple in front of me and wondered which of them was the patient and what they were having done. To the left of me was a group of chairs and a television. We were on the top level of the large building, and from where we were you could see down to the ground level. There were many plants, glass and wood, and plenty of sunlight. I assumed that the group of chairs was where my family would wait for me, and I imagined them sitting there together waiting to hear the news of how things were going.

We were sent through a set of double doors and down a hall into a private room, where I was asked to change and they did some tests. After saying goodbye to Mike, Kerry and my Aunt Betty, the nurse led me to another area which I assume was the opposite of the recovery room, let's say the prep room. There, I was visited first by the anesthesiologist's assistant, the anesthesiologist, my neurosurgeon and a nurse. They then wheeled me into the O.R. This was by far the creepiest part of my experience. The room was huge. The first thing I noticed was the metal table on the far wall covered in bright blue paper and about 70 silver tools that looked like different shaped scissors. The placed me in the center of the room under three large overhead lights, kind of like the ones at the dentist, but about five times the size. To the right of me was another table, I assumed they would move me there for the procedure since I'd have to be face down. There were about seven people int he room busily getting things in place and doing I wasn't sure what. They injected something into my IV, so I knew my awake time was limited, I tried to keep looking around to absorb the room and get a good look at it, because before long...

I opened my eyes to find myself in place that looked like the the "preparation room". At first, I thought I was still there and had dozed off. The anesthesiologist's assistant was next to me saying "Kristin, you're in the recovery room. You're at Evanston Hospital and you just had surgery." I couldn't believe it. I responded, "They already did it?" "Yes" she replied. For a minute, I forgot I had been in the operating room and wonder if I would even remember if I hadn't made such a conscious effort. She checked my pupils and asked me a few more questions, but I immediately began my own tests. In my head did math problems, spoke in Spanish, recalled states and capitals, thoughts of my family members names and birthdays, ran through the recipe to prepare tuna casserole, thought about my mom and became sad, thought about my kids and became happy, wiggled my fingers and toes, I focused on a nurse across the room and on the name tag of the doctor talking to me...everything worked, intelligence, emotions, I wasn't paralyzed, deaf or blind. I then sighed in relief, my brain was still functioning. Then I felt the pain, my God, it was unbearable. They had given me Dilaudid through my IV but I don't think it was doing much, because the pain I was feeling was excruciating.

I was supposed to spend one hour in recovery and go to my room in the ICU; I spent 6 hours there waiting for a room to open up. I don't remember much since I slept most of the time. They took me for a C-Scan before taking me to my room, and I remember asking them to be very careful when moving me because I had just had brain surgery, I'm sure they found that amusing, but I was in such pain, the though of being moved was almost too much to handle. They assured me that would be very careful, but I was certain that my pain was far worse than anyone else could had ever experienced, and that moving me might kill me. I made eye contact with one of the lab technician's that tried to communicate more than I could with my scratchy voice (from being intubated), and he promised they would be careful. On three, they slid me over to another table, and I really didn't feel a thing.

Eventually, I finally made it to my room in the ICU, where I was accompanied by my sister, aunt and Mike. Much of the time there was spent trying to get me comfortable as I went in and out of consciousness. I find it hard to believe that it was just a week ago, and that I am now sitting on my couch getting ready to take a shower and then take the kids to the library. The human brain is truly amazing, along with science and medicine, especially when things work out like they are supposed to. I'm so relieved that things did, having been there when they didn't, and so grateful that my biggest complaint is some neck pain and a headache that I can deal with by taking ibuprofen. Well, that and a pretty ugly hairdo that can easily be covered up and a scar no one will really see. In the grand scheme of it all, I have a lot to be thankful for.

Finally home

I can't express how it feels to not only finally be home, but feel well enough to be writing this :) On Friday, I met with the occupational and physical therapists and really pushed myself to get clearance to come home. I had a feeling they wouldn't work on weekends, and to not come home until Monday would be devastating. I really turned a corner on Thursday and was feeling a little better. I'll be honest, I don't remember much other than pain from the time I woke up on Monday through Wednesday evening. It was the worst pain I had ever experienced or could ever imagine, I seriously wished death upon myself at some point on Wednesday and truly believed I couldn't handle anymore. I was so disappointed in my lack of strength to endure anymore, and then I woke up Thursday, and it really wasn't so bad anymore. I thank God for that! The kids were FINALLY able to come see me, and that gave me even more strength, and by Friday, I was a determined woman, I wanted to come home. And as my mom told me on the phone yesterday when I asked her how she did it for so long, she said it was because she didn't feel better, and when you don't feel so good, you're not ready to go home so you don't want to. That made sense, because I was feeling better.

The neurosurgeon would have the final say, and they make their rounds VERY early. Each time they had come, I had been sleeping and they were concerned about my alertness and ability to bounce back from the anesthesia and pain meds. There was even some talk of putting me in a rehab facility; over my dead body...so when he came in, I perked up, smiled and said hello, looking as alert as I possibly can at 7:45 a.m. (I'm not a morning person). He was a bit taken back, did his tests, and then told me exactly what I wanted to hear...I could go home today or tomorrow, he saw no reason for me to stay any longer. I said I'd go home today and practically jumped out of bed to pack up before i realized there was some paperwork involved, and they should probably take the line out of my artery in my wrist first.

Mike was there and helped me pack up my things and get me settled here at home. Taking a shower was heavenly. This may be too much info, but you must be wondering. Yes, I can wash my hair, and I just have to pat the back of my head dry as to not catch any of the 15 stitches running from my neck about 7" up my head. They shaved WAY more hair than I was expecting too, but it will grow back. The kids came over after, and Reagan's face lit up when she saw me. I was sitting on the couch in normal clothes, and I left my hair down after my shower, so no shaved head/ugly scar were visible, I looked like mom again. She came right to my side, hugged and kissed me, and held my hand. Charlie also came and hugged and kissed me. I noticed him looking at all of the injection sights, tape marks, bruises, etc, but I tried to smile and get him to look at my face, because that hadn't changed. He asked Reagan if she wanted to play. She replied , "Um, in case you didn't know, I haven't seen my mom in like a week, so I'm staying right here". He then crawled up on the couch and we all watched tv; it was perfect :)

Bill went to get my prescriptions and some food for me before coming to get them, and I have just been chilling here ever since. I tried to cook myself dinner last night, but it's not easy standing for a long time. My head feels like it weighs 70 pounds. They had to cut the muscles in my neck and stretch them out and back, and that's mainly what needs to heal and loosen up. It feels like a bunch of really tight rubber bands. I can barely turn my head, and holding it up for a long time is hard, so I need to rest a lot. It's kind of lonely being here all alone, but if the kids were here, I'm not sure I could manage on my own. They are coming tomorrow for the day and staying the night, and my aunt will come as well. I'm really looking forward to go to their activities again. I missed Reagan's softball game and a swim meet, Charlie's first T-ball practice of the season, but I'm hoping not to miss anything else.

I'm looking forward to Mike coming to visit me tonight :) He probably had a rougher week than I did on some levels. So many of you have acknowledged what a wonderful job he did with keeping up with the Blog, rightfully so, but I want to also thank him for constantly being by my side during the toughest week of my life. I so appreciate everything he did for me, from feeding me ice chips to reading me all of your encouraging messages to sleeping on a chair using my robe as a blanket. Thanks to all of you for your support and gratitude, it means a lot. He also has a full time job and 2 kids, so juggling all of that really wore him out. He has to travel this week for work on top of everything else; I'm not sure how he does it, but I hope he's having a well-deserved Happy Father's Day :)

Getting Better All the Time...

A short but very positive update - Kristin is doing great. In the last 24 hours she's regained a bunch of her energy (no more constant sleepiness)and her pain has begun to discipate a bit. She's still uncomfortable at times, but its nothing like before. She can moved her head around much more and can get out of bed on her own as needed.

Looks like we might finally be getting close to getting Kristin home! She's definitely ready.

More to come soon, very likely from Kristin herself. Thanks for bearing with me. :)

- Mike

Road to recovery begins...

Good morning, all. Kristin has had a rough couple of days, but we may be turning the corner.

Kristin woke up Tuesday morning in the ICU in pain, but she was alert, talkative and hungry (she ate a really good meal). She had been on diluadid for her pain, along with a cocktail of various other drugs in attempt to relax her muscles and control the usual post-op nausea.

For those of you who don't know or who have never had the "pleasure", diluadid is pretty strong stuff. As I understand it, dilaudid is a Class-A narcotic whose base ingredient is hydromorphone, which is also used for morphine. I can tell you from personal experience that its effects are quickly felt and very strong. I was given it while in the ER following a car accident. I immediately felt very warm, calm and had little or no pain in spite of s very serious injury to my hand. However, when I came out of surgery and asked for it again I was refused (they gave me something else) on the grounds that it is too strong.

The difference with Kristin is that the location of her surgery is very sensitive. There are a lot of nerve/nerve endings in that area, plus the muscles in her neck were literally cut and then put back together in order to accommodate the need to gain access to her skull. Moreover, Kristin has been on so much pain medication for so long that she has developed some resistance to the different narcotics used to treat severe pain. Accordingly, dilaudid - being as strong as it is - is a good option.

When Kristin got to the ICU the diluadid was being administered via "patient controlled analgesia" ("PCA"). Kristin was required to push a small button when she wanted the medication. The dose would be administered from the PCA machine into Kristin's IV. After that the PCA machine would lock her out from using it for between 6 and 8 minutes.

The trick was that only Kristin could push the button. If she fell asleep (which she did understandably often) she wouldn't get any of the drug, and would eventually wake up in considerable discomfort. This happened frequently enough that the doctors eventually decided to up Kristin's dose by nearly half (a nurse later told me that I would need to be "peeled off the floor" if I was receiving that much of the medication). The side-effect was that Kristin became essentially sedated (she couldn't stay awake for more than a few seconds and barely spoke) and her breathing was shallow, which led to her being put on oxygen through a "nasal cannula" (i.e., little tubes in her nostrils).

Between this added airflow, the effects of the intubation tube she had in her throat during surgery, and the surgical anesthesia wearing off, Kristin's throat became inflamed. She didn't eat, talk, or drink very much for about 24 hours, into the afternoon yesterday. She was also still very uncomfortable due to the considerable pain in her head and neck.

On top of all of this, it was important for Kristin to start moving around and out of her bed. The nurses moved her from her bed in ICU to a chair, a process that caused a great deal of pain. In addition, she was visited by occupational and physical therapists who put her through some mild exercise. She was understandably less than thrilled about this, but she pushed through and did it. Maintaining her physical capacities and keeping her blood flowing is an important step in Kristin's recovery.

Kristin was transferred from ICU to a regular room early yesterday afternoon. Her doctors were concerned about the state of sedation she was in, so they decided to take her off the PCA and cease all narcotics except for smaller dilaudid doses administered by the nurses every 2-3 hours. The initial few hours of this were incredibly difficult for Kristin as her body adjusted. She couldn't get comfortable in bed and was in as much pain as I have seen her in since she was in the recovery room after surgery.

The good news is that Kristin appears to have adjusted. She's still uncomfortable of course, but this morning she has been far more alert, oriented and talkative. Her throat is less sore and she's able to move herself around the bed without help. She even managed a smile when I made a joke earlier. This is a major step - not because my jokes are funny, mind you - but because she's back to interacting with people after more than a day of withdrawing from almost any such activity.

In addition, the doctors removed her bandage at about 6:00 a.m. this morning and I got my first look at the incision. It runs from the mid-point of the back of her head to the base of the back of her neck. Its about 1/2 inch wide (maybe a tad more in spots)when you include the staples that are holding it together for the time being.

The incision itself is very thin and looks good to my untrained eye. Its swollen of course, but not too bad. It has some redness, but again nothing that you wouldn't expect from such an intrusive procedure. Most importantly there does not appear to be any seepage from the incision whatsoever.

Thanks for your patience in awaiting this update. I have been with Kristin nearly all day and night since she arrived here, so it had been hard to find the time and energy to sit down and write a good post that would get you all the information that I know Kristin wants you to have. Many of you have checked-in on Kristin several times. That sort of love and support for her is incredibly meaningful to her recovery. Please keep it coming. :)

Mike

From the ICU...

I am in the ICU with Kristin and she is asleep. It was a very hard afternoon and evening for her, but she has handled it incredibly well.

The ICU was overrun with patients, so Kristin spent her first 4-5 hours post-op in the recovery room waiting for a bed to open-up. Even though it breaks with normal procedure, we were each allowed to visit her in the recovery room. At around 5:30 they took her for a CAT scan (standard procedure; nothing to be alarmed about) and finally brought her to her room in ICU.

Kristin has had and continues to have some significant pain, so it took a while for her to get comfortable in her bed. Her incision runs along the back of her upper neck and up to the curvature at the base of the back of her head. The entire area is covered in a large rectangular bandage.

As you might guess, putting any sort of pressure on that area causes Kristin a great deal of pain. Aunt Betty, Kerry, the nurses and I tried a bunch of different bed and pillow combinations until we found one that works: her bed is raised at about 45 degrees and we arranged the pillows so that her head and neck are supported, but the incision isn't really "pressing" against anything.

The nurses here are wonderful. They are very patient and have worked to adjust Kristin's meds in order to find the combination that will take the edge off and allow her to sleep. They are even allowing me to stay overnight in Kristin's room with her so she can know someone who loves her is nearby at all-times.

Even more importantly, Kristin was able to speak on the phone with Reagan earlier this evening. Bill called from Reagan's softball game and Aunt Betty put the call on speakerphone. Kristin told Reagan that she is through with the surgery and that it went very well. Reagan told her how happy she is that it is over and that she loves her very much.

As my mother put it, "Chiari malformation correction may be the 'appendectomy of neurosurgery', but it still means that you are having surgery on your brain." To willingly take this on when she could have easily avoided it shows once again what an incredibly strong and brave person Kristin is.

This is Kristin's blog and it is very special to her, so I hope that I have done right by it, by her, and by all of you. Hopefully she will feel up to posting (or at least dictating posts to me) in the next day or two. If not, you'll be stuck with me for a bit longer as I keep you all informed. :)

Thanks so much for the outpouring of love and support that was received today. It kept us all going and means the world to Kristin.

- Mike