Living with Chiari – Surgery Liveblog

1/15 10:00am: We slept until 9:45am! It was so nice. The night was kind of long, but not too bad. When we first put Jessica in bed, she got way too cold before she could heat up under the blankets, and she started shivering pretty bad. All the shivering made her REALLY sick, so I crawled into bed with her (it was only 9:00pm, so I wasn’t ready to go to bed yet). We snuggled really close trying to heat her up. I felt really bad for her, but she was ok after a while. Also, we found that making her eat a couple pretzels every time she took pills during the night (2 or 3 times) helped curb the nausea some. Anyway, she ate a bowl of mini wheats this morning with a small glass of chocolate milk and is taking a shower by herself before she starts feeling tired/sick/in pain. It really is always one of those three things, but it IS getting better. I feel really blessed to have modern medicine that they can just cut their way in and make room for her brain/fluids to move around and sew it up all in a couple hours and the only immediate side effects are nausea and headaches. Granted, they are very much helped by drugs, which itself is also a miracle.

1/14 7:30pm: I’ve been home since 1:45ish. The first thing I did when getting here was go to sleep. I’d been awake for quite a while before getting to go home, and needed a nap very badly. I got to see my sweet little boy around 4:15. I don’t know how I’m going to keep up with him! He’s got some much energy, but he does make me smile. I’ve seen my family and they brought me some dinner from Louies. It was a HUGE sandwich (really more like 2), and I only ate a quarter of it. So, you could say I ate half a sandwich. 🙂 It’s been a pretty radical diet (and not one that I’d EVER recommend), but I can already see a difference in how my pants fit. 😉

1/14 11:40am: just finished lunch. Didn’t eat quite as much as breakfast, but she was snacking and drinking lots of fluids between meals. We are leaving in 20 minutes! We are now packing up and waiting for her next round of meds at noon. Yay!

1/14 8:40am: Good Morning! It is a good one for us. Jessica got off her IV again last night around 1:30am, and she woke up feeling really well. She ate a TON (well, relatively) of breakfast and only stopped once she felt full, NOT SICK. She has yet to feel sick from it, so the doctors are sending her home today! In her words: “They are springing me from this joint today!” So, let’s just hope to have no more new news!

1/13 6:10pm: check out the video below for your latest live blog courtesy of Jessica!

1/13 6:05pm:

1/13 2:15pm: Well, they didn’t like the increased nausea and dizziness after taking her off the IV, so they’ve put it back on her. They did decide to try giving her solids for lunch. It wasn’t any better or worse than liquids. She could only stomach about a half a roll. Her dizziness is a little better than this morning. Its all kind of frustrating for her because we are not seeing much improvement. At least the headaches and soreness are at acceptable levels. We don’t mind waiting for time to take it’s course with the nausea, but it’s difficult when you don’t know how much time is required.

1/13 10:15am: Sorry about the lateness of this. I had to take Spencer to his first Mother’s Day Out and just barely got here. Lots to update. Jessica had a really good night last night. Except for being woken up every so often to give her medicine, she slept really well. When. She woke up this morning she was feeling her best yet. She ate some broth, juice, and some of the Ensure. She said it was more than she’s ever eaten yet. The doctor came and said he was really pleased with her recovery so far. It was his estimation that she could probably go home tomorrow or Saturday. The only thing she had to accomplish was keeping down solid foods and being able to walk around a bit more. Based on what I see now, I’m thinking Saturday more than Friday. Her incision is still looking really good. They took off her IV this morning. That scares me a little bit because drinking very much at all can make her sick, but I guess they won’t let her get dehydrated.

Anyway, while she felt good, she got up and brushed her hair and put on some chap stick. Previously, she’d only been able to be up long enough to go to the bathroom. She unfortunately started feeling sick again. Let’s just hope it doesn’t last too long. It is funny because we thought the headaches were going to be the biggest hurdle for her while here, but it has really been the nausea.

1/12 9:00pm: Jessica got a good nap from about 5:30 to 7:30. She woke up acting almost like normal. It was really encouraging. She wanted her dinner and ate about half the broth. She basically had very low pain in her head and no nausea. It wasn’t to last forever though. About a half hour after dinner, the nausea set back in. It is pretty bad right now (just asked for the barf bag), but the meds for it are due in about 20 minutes. Hopefully that will help. So, a little more food, a little more delayed nausea. We’ll call it a victory.

1/12 5:35pm: I guess I should update this. She is sleeping a lot less. We watched two whole episodes of Friends and some Everybody Loves Raymond. Her parents came and visited for a while. Nice to see the “real” Jessica come out for a while. She was sitting up and not looking that drowsy for a couple hours. Her lunch came late, and all she was able to get down was a half cup of juice and a half cup of jello and a half a Popsicle before she felt nauseous again. She looked like she was about to lose it, but she managed to keep it down. I guess it’s good to win the small battles and all that. I’m guessing the doctors’ criteria for her leaving the hospital would be to a) not be exhibiting any complications from the surgery (especially spinal fluid leakage) and b) be able to eat and keep down caloric intake. I’m guessing that second thing will probably take another couple days. Here’s hoping we can figure it out quickly. I’m sure it will end up being a really small thing in the long run, but you know how it is dealing with is stuff in the present. 🙂

1/12 2:08pm: here is a shot of her “zipper”:

1/12 1:45pm: still sleeping a lot. She does pretty good with getting up to go to the bathroom by herself and doesn’t seem to slow about it either. Still a lot of pain and dizziness and nausea, but that is very expected. As the doctor told her, you’ve reconfigured the way your nervous system is flowing out of your brain. It needs to relearn a lot of things. Until it does, you’re going to be unbalanced and nauseous. She isn’t really drinking anything yet, but no doubt they will be making her do that soon. Maybe later we will walk up and down the hall some.

1/12 10:25am: Jessica is out of the ICU. She just got set up in her new regular room (by ourselves, not sharing). She is in pretty good spirits, but after being awake for about 3 hours, I think she is going to sleep for a while. The nurses had get retake the meds she vomited, and they stayed down this time. Also, she is off the morphine and on percocet, which is a good sign.

1/12 9:37am: Ok! Sorry about being such a slacker last night. Don’t worry, nothing really changed after my post. That is, until this morning. I couldn’t stay the night, and before I got here, he had seen her surgeon and some other doctors. They removed the bandage from her incision. I haven’t seen it yet, but they said it looks really good. When I came in this morning, she was sitting up a more alert than she had ever been yesterday. They had er get down some fluids including broth, juice, jello, etc. Unfortunately, she piled it all out about 10 minutes later. They are going to try some different nausea medicine because they should be able to control this better.

So, she was awake from about 7:30 to 9:30, so that’s a really good sign! She even got out of the bed for the first time to go to the bathroom (oh yeah, no more catheter either). They have our next room assigned (call if you want the number), and they will love us soon. Less than 24 hours in the ICU! Yay! All her monitoring wires have been removed, so that’s good. She is just down to two IVs.

Anyway, I guess you can probably tell that I am kind of excited. :). I just didn’t like seeing her devoid of her normal personality yesterday, and it was nice seeing some of that shine through this morning, especially her smile!

7:25pm: She is about the same as ever. I had to leave from 6:30 to 8:00, so last I saw the nausea medicine was working. Headaches worse than any she’s ever had, but they seem bearable. She’s still sleeping 95% of the time. Also, the doctor said that the nausea is common with this surgery for up to 3 days afterward as part of what they are cutting is part of what controls nausea or something like that. I will post one more update when I leave at 10pm.

3:45pm: Code red finished about 10 minutes after it started. No idea what it was. Anyway, Jessica woke up to roll over and vomited (or tried to; nothing in her stomach) for about 5 minutes. She is back to sleep now though.

3:25pm: Attention! Code Red! That’s the message that is blaring over the ICUs speakers. It sounds like it is for our whole floor. It is accompanied by loud whooping sirens. The first time it came on, Jessica fluttered her eyes some, but now she is just snoring away! A nurse came by and made us clise and lock our door weird! Jessica did wake up for a bit a little while ago, an she seemed a lot more coherent than before, but she quickly fell asleep. Anyway, I’ll update if I find out anything more about our code red.

2:20pm: She finally got an ICU bed! I just came back, and after saying hello to her dad, she promptly passed out and seems to be resting peacefully. Hearing her snore has never been so comforting! I can’t see her stitches yet because they are still so bandaged up. Before passing out, she told us she vomited 2 or 3 times after waking up from surgery, but not since then. The nausea is still there and the headache excruciating, but other than that, good! Ok, I put that last part in there, but she seems about as good as can be expected. I really hope she just sleeps and sleeps.

1:36pm: the nurse finally called us and said she got permission to move Jessica to any unit in the ICU, so she’s hoping one opens up in the next 30-40 minutes. She said she (the nurse) hasn’t been more than 6 inches away from Jessica’s bed this whole time, so that’s reassuring. She also said that Jessica is still kind of sleeping on and off, and they would like to keep it that way since it is the best way to combat the nausea.

1:20pm: Still waiting.

11:35am: Ok, after all that cursing, I’m going to bless someone. Bless Justin Clayton! His family are friends of ours, and it just so happens that he is a surgical resident and is on call around our building today. He is stopping by to check on Jessica every so often, and he said that the vomiting was just initially and a typical reaction to the anesthesia. He said that she is sleeping now and is doing pretty well. We are so lucky that even though we can’t go in to see her, we have a friend who can. Thanks Justin! Oh, and still waiting on that ICU bed.

10:57am: Curse you bad-news-giving lady! The nurse just called again. Jessica is still in the recovery room and STILL can’t leave and we STILL can’t see her. And she is apparently now vomiting. I don’t know how much because AT&T dropped my call and now she’s not calling back. Curse you AT&T! Curses all around!

9:45am: A nurse called me from the recovery room. We aren’t allowed to go see her yet because they have other patients in there and privacy and blah blah blah. She said that no rooms are available in ICU yet, so until they are, we can’t go see her. :(. Grrr. She did say that she is ok. She has been kind of nauseous (normal) and in pain (also normal), but she is giving her drugs to help. Let me see my wife!!!!!!

9:00am: The surgeon (Dr. Mapstone) just came and talked to us. He said the operation went well. He said she was really tight when he opened it up (the brain was really cramped), so it was really good we got this done now. He said she’ll get into recovery soon and we’ll get to see her. He said everything went really well and she should have no complications, but that’s why she is staying here for several days, so they can monitor her.

7:45am: I got the first call from the nurse. They finished anesthesia ok and the surgeon has made the incision. Crossing fingers!

7:10am: Ok, we’ve parted ways. She’s probably gone under anesthesia (spelled it right the first time!) at this point. We probably met about ten doctors before she left. Dr. Mapstone (our surgeon) came in to say hi. Last month we asked Heavenly Father to give us guidance in picking the right surgeon, and when we met Dr. Mapstone, we felt at peace with him being the right one. Well, after he stopped in this morning I felt that same peace very strongly. I hope Jessica did too.

6:20am: We got here around 4:50, but they didn’t open until 5. Longest 10 minutes ever. We actually got called back to the pre-op room around 6:00. She’s all IVed up and ready to go now. No turning back now! (not that we would want to). Now we wait for all the different people to show up here before surgery. Luckily, they will all come to us.

I (Adam) will be updating this post with all the pertinent information about Jessica’s surgery over the next few days, so keep checking back. Here we go!

Living with Chiari – Adam’s Goings On

1/12 9:05pm: The cafeteria here is pretty good! I had lunch and dinner there, and it is really cheap. I had a hot link in a bun, chips, a cup of soup, and a large drink for $5. I didn’t know they closed at 7, so I made it down there a little late, but they did have a vending machine that sold the same fresh salads and sushi that they sell in the cafeteria, so I bought a HUGE Cobb salad for $3.60. It was a really good deal and quite tasty. I’m glad that they don’t rip off all the employees and visitors here and actually understand that people are usually here because they are dealing with something crappy. It makes us feel a little better when someone cuts us a break.

Anyway, I’m about to leave for the night. I might stay tomorrow night, but I’m going to take Spencer to his 1st Mother’s Day Out tomorrow. We wanted it to be one of us taking him because it is such a new place.

1/12 1:52 pm: it is a lot more comfortable for me in this room. I can control the temperature, I can close the door, and I am way less stressed about Jessica. I have been mostly playing games on my phone and watching Netflix on my iPad. I was so excited the hospital’s wifi was letting Netflix work. I’ll probably get a lot of stuff watched this week. Last night, I was reading Metro 2033 while sitting next to Jessica in the ICU. It is a sci-fi post apocalyptic thriller about human life in Russia that was forced underground into the metro tunnels. It is often quite creepy, and reading it in the dark late a night was pretty cool. I highly recommend the book, and if you like video games, there was a game adaptation that was actually very good.

1/12 10:17am: I left last night around 10pm, and I thought I was going to just crash into bed when I got home, but I ended up not going to sleep until 11:30. I was worrying about Jessica because I didn’t know if her constant sleeping was normal or not. Now I’m just sitting in our normal hospital room watching her sleep. I’m really encouraged by her progress so far today. Hopefully they can get the nausea under control.

1/11 7:30pm: Well, I mostly just sat in the chair next to Jessica and read a book, played on my phone, etc. She is sleeping so much, which is good. It makes me wonder if I am doing any good being there, but I think she rests easier knowing I’m there. Now I am sitting back out in the waiting room. They kick all visitors out from 6:30 to 8 in the AM and PM. I grabbed some KFC before coming back here to sit. It is interesting being in the same room as so many anxious people who’s relatives/whatever are all in the ICU. Everyone either seems antsy or exhausted. I’m currently antsy.

1/11 2:30pm: I’m finally in the ICU with Jessica. Read the main post for details about her. A perk of being here is that the heat is on high and it feels really good! Plus I can just sit and listen to her breathe. I’ve never quite enjoyed it this much before.

1/11 1:20pm: We finally found a waiting room that wasn’t cold. I was finally able to nod off a bit, though I’m not sure if I feel any better. I just want to see my sweetie!

1/11 10:37am: gah! It was so cold in that waiting room that we moved down to the cafeteria. It is still cold here, but not as bad. To put it another way, we went from the icebox to the popsicle.

1/11 9:45am: so, I’m just waiting for them to bring us into recovery, and this waiting room we’ve been waiting in has no heat. It’s the coldest day of the year, and no heat! I’ve had my full winter coat on for the past three hours and I’m not uncomfortable in the least. Anyway, I’m kind of scared for how much pain Jessica will be in.

I will be updating this post throughout the next few days with what I’m doing. Definitely not the most interesting stuff, but it will give me something to do while Jessica is recovering/sleeping/etc.

Spencer’s New Bike

Spencer really enjoyed all his presents today, but the one
that brought the most smiles was his new bike. A few months ago we
heard about “running bikes” that have no pedals. They are designed
for little kids to ride them by simply walking or running because
both their feet are always touching the ground. It teaches them
balance right away, and when they are ready to lift their legs up,
it has foot rests. Anyway, we got a Strider brand bike, and here is
Spencer riding it for one of the first times.

The Great Cloth Experiment, Dad’s Point of View

Jessica just left for California for her brother’s wedding, and I get to spend the weekend (a 3-day weekend!) with Spencer.  I’m quite happy about this.  I also get to spend the weekend with cloth diapers, or at least that’s what I thought.  This post is NOT void of vivid descriptions of baby poop, so be warned.  🙂

I’ve changed his cloth diapers before, but I’ve never done the whole shabang by myself.  This involves using them throughout the day and having to deal with any poopies as well as washing/drying them at night and re-stuffing them.  I was all gung-ho about it.  I was on board.  In fact, I’ve never had any issues yet, and I’ve been behind Jessica 100% with this.  I still am, but I think my weekend of cloth diapering is over.  That’s right: after one diaper change I may be going disposable until Jessica gets back.  Here’s why.

The very first diaper I changed after we got back from the airport was a poopie.  It stank pretty bad, but I’m a veteran.  I don’t cringe in the face of duty.  I wisely removed the cover from the changing table, not knowing whether the wet in his pants was pee or poop (gross!).  I laid him down, pulled down the pants and diaper, and there it was, Lake Spencer.  Maybe Mud-Bog Spencer or Swamp Spencer would be more accurate.  It was definitely liquid, but with solid leanings.  Please understand, I’m not a noob when it comes to these things.  I have always done my fair share of diapers, poop and non-poop alike, but this one was massive and disgusting.  And the worst part?  I knew I couldn’t just wrap it up and throw it away.

I cleaned off Spencer’s bum while trying to keep his hands from investigating The Swamp and finally managed to get poop separated from baby.  I set him down, bottomless, and sent him to the bath tub.  I very carefully carried The Mud-Bog to the toilet and prepared to dump it out like I’ve been instructed.  Jessica’s told me that you just dump out what you can and then put the rest in the pail.  First of all, this was NOT going in the pail because I didn’t want to have to SCRUB sloshed over swamp-stuff from the pail.  That meant it was going straight to the washer, but I wasn’t going to throw all the “mud” in there.  My problems increased as I realized it was just in that “sweet” spot on the liquid/solid scale that it wouldn’t dump out of the diaper.  I balanced it in one hand while going to get water in a cup with the other hand and tried to rinse it off into the toilet.  That was fine for the first time, but then I realized I had to get more water, but now I had a dripping swamp-diaper that I had to balance just right so it wouldn’t come out while I got to the faucet.

I did this about 5 times and decided it was ready for the washer.  Unfortunately, on my way over there, the now mostly water/somewhat poop stuff on the surface of the diaper started to drip out, so I had to catch it with my hands.  This does take two hands to achieve such a feat, and I found myself at quite a loss for how to open our front-loader washer.  My feet soon sprang to action, and I really hope you can get the vivid picture of me juggling the swamp diaper while dancing on  one foot while the other is tangled up in the washer door handle.  It even makes me laugh…now.

So, it all turned out ok, but I just don’t think I’m going to do it the rest of this weekend.  Sure, Spencer likely won’t put me through that again, but I just don’t want to deal with it when the disposable works just fine.  Don’t get me wrong, I am totally behind moving to cloth diapers and think it’s a fantastic idea and will support Jessica a 100%.  But Jessica’s not here.  🙂

P.S.  I really am behind you a 100% sweetie!  Just not for the next couple days!  I love you!

Google Maps resolution

Jessica and Spencer are gone for a couple weeks, so naturally I went to work on useful, important things.  Here’s a perfect example of this.  It occurred to me that any digital map can only map a certain number of pixels.  Stated differently, every pixel on the screen can only have one point on the map related to it.  This can be illustrated by hovering your mouse over a map at http://maps.google.com.  The point at which your mouse is hovering is one exact longitude/latitude combination.  The interesting thing I discovered, at least for myself, is that every scale of “zoom” (Google has 19), will have less latitude/longitude coordinates to map as you zoom out.  The most zoomed-in level can map more coordinates per pixel than the most zoomed-out.  This is assuming that your screen could show the entire image of the zoom level, a high standard for level 1 zooming (only fit a 1/4 mile stretch on my screen).  The most zoomed out image shows the entire Earth in about an 1/8th of my screen.

Ok, so here’s the REALLY interesting part.  It turns out that the pixel-to-coordinate resolution at the level 19 zoom (most zoomed-out) comes out to each pixel being 30 miles away from each other horizontally and 80 miles vertically. What this means is that at level 19, a whole 2400 square mile expanse is represented by one single latitude/longitude coordinate.  What is MOST interesting is that it is always the same (at least on Google Maps).  For my house and almost all of Oklahoma City, we all resolve to 35.460670, -97.031250, somewhere east of the city. Here’s the link to the spot:  Adam’s Level-19 Coordinate.  The home I grew up in Sugar City, Idaho resolves to a spot in the Targhee National Forest just north of Fall River about a 1/4 mile from the Wyoming/Idaho border.

What’s yours?  Just hover your mouse over your house on Google Maps, zoom all the way out, and then all the way back in without moving your mouse. Right click, click on “What’s Here”, and it will post the address or coordinates.

Bald is Beautiful!

So, yeah, I haven’t written here in a long time.  Today has definitely provided a worthy reason:  I shaved my head today with a straight razor.  I’ve been using clippers without a guard for a while, but it still leaves some stubble.  I wanted a real aerodynamic feel.  After only a few drops of blood and a substantial amount of razor burn, here’s the result:

And as an extra bonus, here’s upside-down Spencer:

Race for the Galaxy

Ok, right on the heels of the last post is about another “board” game called Race for the Galaxy.  It is actually a card game about expanding your galactic empire by Exploring, Developing new technologies/establishments, Settling new worlds, Consuming goods to earn points towards victory, and/or Producing new goods for consumption later.  Each player (from 2-4) plays out/builds their own empire mostly irrespective of the other players’ empires.  They aren’t completely independent, however, because the game can be ended by any player and you have to be sure to have your strategy finished in time.

Jessica and I played it for the first time last night (bought it yesterday!), and it played through in a little over an hour (including most of the learning time), so it plays fairly quickly.  It seems like it will give just enough time for you to decide (quickly) on a strategy and either finish it or come really close.  In our first game, Jessica tried for the settle-a-ton-of-worlds strategy partly for lots of production and consumption.  I went mostly military by building up government programs to have enough force to take over some rebel worlds.  Jessica ended the game before I expected, and after I threw a tantrum because I didn’t get to take over the rebel homeworld, we tallied up the score.  Turns out I had amassed more points (not by a large margin), so my tantrum was a bit embarrassing in hindsight.

All in all, it was a good game.  We kind of wished there had been a little more interaction between our two empires, but it was kind of interesting to be so immersed in my own that I was able to get into the theme of it.  Also, any game that illicits such viral responses as my outburst at the end is a good game indeed.  We’ll see how it plays out in the future, but for now, we’re glad to have it.

Lord of the Rings

In case you hadn’t heard of it, Jessica and I have a board game that we quite enjoy and just finished playing: Lord of the Rings.  It’s a little more complex than your traditional Monopoly or Risk type of game, but it plays pretty quickly in about an hour.  Its main distinctive trait is that it is a cooperative game in which all the players play their hands individually on the same team against the board.  The board controls Sauron, and each of the players plays a hobbit.  The hobbits try to make it through all the main locations in the trilogy while dealing with all sorts of troublesome events like you find in the books.  They must work together to make it to Mt. Doom and throw in the Ring.

I just thought this deserved a mention because our reactions to it while playing are so unique.  Inevitably, as we are finishing this game, the mood gets really tense as we make our final plans to avoid meeting Sauron.  When we die (lose), we yell (yes, yell) out in frustration, and when we chuck the Ring we yell in triumph.  Yep, it’s that engrossing.  Anyway, if you want to learn more, click here.  It’s a bit expensive (brand new $50, used off eBay maybe $35-40), but we’ve quite enjoyed it.  It’s our first game venturing into the expansive board game world (see http://boardgamegeek.com for more), and I’m looking forward to getting a lot more of these types of games.

Annual Ice Storm

We had our annual ice storm start today and that meant longer commute times for me and house-relegation for Jessica.  For those of you not familiar with them (I know I wasn’t before I came here), the ice storm is simply misting rain in sub-freezing temperatures with the end-result being a nice sheet of ice on EVERYTHING.

By now I’m used to these, and I just know that it involves taking a little more time to get places.  I did observe a couple new things:

1. It is possible to drive your car too slow on an ice-covered road.  This one guy almost caused a five-car pileup because a unique situation required a bunch of people several cars behind him to “slam” on their brakes because of the slow line he generated.

2. When scraping ice off the car window, once you have some of the ice off at the bottom, it is best to flip the scraper over from the normal motion.  The normal scraping works fine for thin layers or snow, but with thick layers it just jams the contact portion of the ice into the firmly planted portion behind it.  With the inverted motion, it redirects a lot of your force outward from or perpendicular to the window.  This is effective because the warming air on the inside of the car (you turned it on, right?) has created a thin layer of melted ice on the part touching the window, and it needs a prying motion more than a jamming one.  Hope that makes sense.

The Birth Story

(100th post by the way. Kind of interesting)

It all happened unexpectedly, and I’m not being cliche-ish. Every single thing about this whole experience has been unexpected, good and bad. On Wednesday, November 5th, 2008 at 4:45am, I awoke to Jessica saying words not unlike “ADAM!!! Wake up!”. Naturally, I did because I’d been hoping for those words every day for the past week. She was a little excited because her water had broken (“ruptured” as the medical folk say). She had gotten up to go to the bathroom, felt a gushing sensation, and the rest you can guess. After we came to the realization we were going to have a baby that day, my next words, as you can expect, were “Want to go back to bed?”