Five Weeks Post-Op

I guess my standard is to be two days late on updates.

I think the biggest news of the last week is I had my gold weight surgery on friday. Basically, I went in, they took me back to preop to do a set of vitals and stick a grounding pad on my leg, they put these sticky drops in my eyes (they said it was to numb them so it wouldn't sting if/when they get betadine in them), and took me back into a little O.R. It wasn't in a hospital, but in a special eye surgery center that's in a eye doctor's office. Pretty cool.

[Surgery details that could potentially be gross in the next few paragraphs. You've been warned...]
So anyway, I was the last case of the day. The nurse put on a BP cuff and pulse ox and asked me if I needed/wanted an oxygen mask (they knew I'm a nurse). I was like "uh, I don't know. Do I need one?" They put a drape below my eyes that covered my mouth and all, and one above my eyes I think. Suddenly the doctor started scrubbing all around with betadine and I thought "Oh, I guess I'm supposed to close my eyes now." The bright OR lights were on, of course pointing right in my face/eyes on purpose, which is awesome when you can't close our eye all the way. And extra creepy when they open your eyelid up so the light gets oddly brighter as the layer between you and it is thinner.
Like the betadine, the local anesthetic injections were kind of out of no-where. Like, "Hey, you're poking my eyelid with a needle now! Okay!" I heard and smelled the cautery cutting my eyelid, but luckily didn't feel a thing. It was a little uncomfortable when he was putting the weight in because I guess they kind of have to make a pocket for it. And he had to do a little more cutting towards the end and I said "Uh.. I kind of feel that..", very nervously because it hurt some, but I don't know that they heard me. Anyway, I heard him ask for a "six O" (6.0 ... a suture) and I thought both "Woohoo, almost done!" and "Wow, that's a tiny suture." Then the doctor was wheeling me out and explaning post-op care and that was that. There was some conversation in the OR but I didn't participate much because 1) There was a radio on and apparently, with only one hearing ear, I can't understand people talking when there is background noise, and 2) I was being operated on. Keeping my eye somewhat closed takes a lot of effort and thought, and I could feel it trying to open while he was working on it.
[Gross stuff over.]

The "operation" (it seems weird to call a little outpatient thing under local an "operation" after brain surgery...) was pretty successful, but we won't know the full effects until the swelling is gone. I can almost close it all the way, but still not completely. The first night, when the lidocaine wore off, I whimpered a lot. And had frozen vegetables in sandwich bags on and off every 20 minutes, for hours. And took an oxycodone before bed. And said if I ever got another tumor I would just let it kill me, haha. The next day postop it got somewhat swollen but nothing horrific and now with my eyes open it really looks pretty normal. The incision is in the natural crease of my eyelid so once it's healed it'll be like nothing. I go monday to get the stitches out.

I did end up going in to get it looked at last monday because when the nurse called to check on me I told her how it feels like there's something in my eye all the time, and apparently that's not completely normal. I figured it was just from like the curvature of my eylid being different or something, but the doctor wanted to check it out and make sure it wasn't a stitch poking me. I was fine with that. So he fit me in between appointments just a hour and a half after a spoke to the nurse. Turns out I was right and everything looked fine.

For right now, no more plastic wrap on the eye. But, I'm not sure if I mentioned before that the left eye also doesn't produce tears anymore (so weird to only cry out of one side...), so I still have to put drops in frequently and ointment at night. That eye pretty much feels irritated and nasty all the time no matter what. But apparently as of monday my cornea looked good, so.. oh well I guess.

Weird thing, it seems I'm starting to get some feeling in that eye, but the feeling on the bottom half of my face is getting worse. Maybe the facial nerve gets worse before it gets better? I can still feel if I touch my face on the left (less than I do on the right but it's there) but if it's below my cheekbone, and especially on my upper lip, it feels weird and tingly almost like when your arm is "asleep". The inside of my mouth is the same on the left, and the end of my tongue still feels like it's been burnt.

Having to remember to bring a straw everywhere to drink really stinks.

Overall the course of the week, aside from the eye stuff, has been to get used to the flow of things at home. I've been trying to get more involved with doing stuff around the house and with my kids, as I can and within my post-op limitations. Sometimes I forget I'm not supposed to bend down and reach to get something off the floor and pay for it with a headache. But slowly I can do more around here. I warned the neighbor's about my hearing loss since when they call out to me it takes me awhile to locate them, and I didn't want them to think I was rude if I didn't return a "Hello" I never heard. Some people with SSD (single sided deafness) may feel weird about it, but it doesn't bother me for others to know. Then they are less likely to talk to me in my left ear and get a lot of "what?" from me. I don't think I would ever get something like a BAHA hearing device because it involves another surgery, and I'm hoping so hard I don't need anymore (though I'm pretty sure the eye is not done...).

Lasty, not so much because I'm out of things to say so much as The Office is on, I read this really good article on the Vestibular System (part of your balance system, including the most messed up nerve on me). Here's a snipit that talks about some non-balance things that can be effected when it's messed up, and describes some of the feelings pretty well. (Italics done by me.)
....
http://www.hearinglosshelp.com/articles/balancesystem.htm
Unlikely as it seems, vestibular damage can cause memory problems. Here is why. When you damage your vestibular system, keeping your balance is now largely a conscious effort, not the automatic effortless procedure it once was. Consequently, those areas of your brain that you once just used for thought and memory, now must constantly work on keeping you balanced. As a result, your memory may suffer. You may grope for words when talking. You may easily forget what is being spoken about during a conversation. You may be easily distracted. You may have difficulty comprehending directions or instructions. You may have trouble concentrating and may feel disoriented at times.

You may also experience fatigue because keeping your balance is now no longer a subconscious event, but something that you must consciously work hard to maintain. All this work makes you tired!

Vestibular damage may also give rise to muscular aches and pains. This is because when your vestibulo-spinal reflex no longer works automatically, you have to consciously control your balance by making your muscles rigid and less relaxed as you strain to keep your balance. In addition, you may get headaches and a stiff/sore neck from trying to hold your head absolutely still so you won't feel dizzy or nauseous.

Finally, damage to your vestibular system can include emotional problems such as anxiety, frustration, anger and depression. Your feelings of self-confidence and self-esteem may plummet. You may feel vaguely uneasy. You may feel that something is wrong or unreal without knowing why.

The One Month Pictures

We found a cord for the camera, so here are the pictures I have from immediately pre-op to one month post-op.

Brodie and me the night before surgery.


















My last bedtime story with Benjamin for about a month.













9/22 - Not quite 5am, in the car on the way to the hospital.


















One month post-op face.... "regular" face, trying to close eye (yeeeaahh), and trying to smile.















With the plastic wrap "moisture chamber".













The lesson being - love your face. Forget about pimples and wrinkles and freckles, etc. It could be a lot worse very easily.

The One Month Mark!

One month post-op today!

I took pictures but we have lost the camera-to-computer cord so you'll just have to wait to see how messed up my face is. Ooooohh..

Some updates from the last week-

-Been sleeping laying down consistently. Whether I'm up sitting in a chair or laying down I wake up nauseated, but hopefully that'll one day pass. If I can do it nine months in a row twice in my life, I can do it again now. No vomiting, so that's good I guess.

-We came home!
We've been out of our house since the second week of July, when we temporarily moved into Matt's parents house while his dad was home on hospice. Since then, we've tried to come home twice (before my surgery), but both times terrible things happened to people in our family, the first being finding my tumor. We felt a little cursed and it worked out best for us to stay there until after surgery and some recovery for me at my parent's house anyway. I haven't heard of any bad things happening this time, so I think we're back to stay. Big thanks to our good friend Jeremy, my brother Sean, and to our neighbors, for looking out for the house and cats!!

It's been two days home and the routine has pretty much been - Matt gets up with the kids, I wake up sometime later, Matt gets the kids ready while I get myself ready, we go out somewhere (Benjamin's last tennis lesson yesterday, the pumpkin patch today), come back and have lunch, then nap time for me and Brodie, get up and go to PT, come back and eat dinner, then put the kids to bed, TV, bed, and repeat. So pretty much I'm useless. But I can shower without supervision now, so go me! I'm not quite a third child anymore.

-My head and neck hurt most of the time, but not so much that it's stopping me from much. It's the fatigue (very normal, from what I understand), and restrictions, and inability to see out of my left eye that are keeping me from things.

-PT says I'm doing great! I don't feel so great, but I guess compared to a month ago when I couldn't walk and support my own weight at the same time, it's a huge improvement. I'm doing well enough that we may get to go down to twice a week from three times. I had something weird happen where I called Dr T to get the prescription for occupational therapy (I was told at discharge I needed it. And I think I do, too.), and his secretary called and said "He said you don't need [OT]." Great. I mentioned it to my PT and she ran some tests and talked with OT and they both thought I could benefit from at least an eval. My left hand still really stinks at doing things and shakes weirdly. I told my PT and OT "I know they had to take a little piece of my cerebellum but they said I 'wouldn't miss it'." They were both like :O "ooookaaaay."

The one test they had me do was the "Nine Hole Peg Test" (pic at right), where you are timed as you take pegs out of the bowl and put them into nine holes, then take them back out again. You get to do it once with your "good" hand (my right, thank goodness since I'm right handed) and twice with your "affected" hand (my left), and then your times are compared. My left hand shook and dropped pegs and was significantly slower than the right, though it did improve between the first and second times, so I guess it can learn. They also did a grip strength test and again the left was significantly worse. So my PT called Dr T and faxed him some of my paperwork and I found out today he approved an OT consult! Yey! It happens next friday. I also got some "homework" to do with my left hand. Typing counts!

-My left eye still bothers me. Gold weight surgery tomorrow. I'd be lying if I said I wasn't nervous. Eye stuff is gross. And I think I'm going to need a benzo before they come at my eye with the lidocaine needle. Yikes. It's all done under local, so I get to eat a "light" lunch and breakfast. I looked at some pictures of the proceedure, which I wish I hadn't. I also just tonight read a bad story of a man whose weight shifted under his eyelid and after just two weeks it had to be removed because it was coming through his eyelid. Yuck! I'm hoping youth is on my side and I'll have nice thick skin good for implanting metals under. And I'm hoping to loose this plastic wrap. It feels so good when I take it off to change it or take a shower.

-My right hip still hurts, especially while I'm not comfortable laying on my incision yet, but loves being back on our tempurpedic mattress. I also STILL have bruises on my stomach from my twice daily heparin injections while in the hospital.

-I joined the ANA (Acoustic Neuroma Association) online forums, which are like an online support group. It really helps to read that other people have experienced the same results of treatment and that if I can just be patient (which I am NOT known for) things will get better. Hopefully I'll even smile on both sides one day. (Or, as Benjamin says, my "teeth will be fixed".)

-I have a problem with eating where I bite my lips on the left as I take bites of things because I can't move them out of the way of my teeth. It's really annoying.

-I somewhat successfully baked a "Happy One Month PostOp" cake. I didn't have the proper pan so it's kind of brown on top, uncooked on the bottom. The thing must a million calories - 3 cups of sugar, 3 sticks of butter, 6 eggs, a whole package of cream cheese... mmmm.

Pictures to come when we find that cable!

The First Mile

Just wanted to say that I walked a mile today.
Three weeks ago it was tough to get from the hospital bed to the bathroom a few feet away.
Things are looking up! Maybe it won't be so crazy to make my post-op goal learning to roller skate well enough to try out for a derby team one day.

The NCCU - In Nicole's Words (Editted)

Going back to 3.5 weeks ago, here's what I remember of my NCCU stay (which is not much and fading fast. Should have typed this out awhile ago)...

The first night was the worst. Looking back, I feel really bad for my first nurse, Kevin, who had to admit me with all my drama at the end of shift. Sorry! Been there, done that, and I know it's no fun.

(Edit to add..) From the moment I woke up from surgery, I was angry. I felt like I had just gone to sleep, and now I had to fend for myself again. I was tired, but scared that if I fell asleep I would aspirate my saliva. I didn't want to have to breathe for myself or try (in vain) to swallow. I was mad. (/edit)

I think my first memory of my second nurse (first night shift), was him coming in to put a nasal cannula on me while I slept. (Edit - I take that back. The nasal cannula was the second night and it was a female nurse. I must have had a mask or something the first night.) I may have been vaguely aware of an alarming when I drifted off to sleep, but not enough to wake me and make me take a deep breath I guess! (Edit - Again, this was the second night when I was desatting while sleeping I think.)

My next memory of him (aside from his Navy ID badge lanyard) was when I was getting potassium and my blood pressure cuff went off and I woke up screaming. I'm still a little angry about this.
The things I had on me at this point (that I was aware of anyway) were a #16 IV in my left hand (which I still have a mark on my hand from.. all this time later), a #18 IV in my right hand, continuous pulse ox on my right index finger, heart monitor, BP cuff on my left arm that went off hourly, and an A line in my right wrist. What happened, at least what I think I figured out, was apparently my A line was not working well to monitor my blood pressure, so they were using the cuff to double check it. I was on pressure meds the first night because my pressure had been low throughout surgery and post op (and I heard I'd had a huge urine output so they also pumped up the IV fluids and that's where I got the idea of fluid overload when I was feeling like drowning), so it was really important they knew what my pressure was.

So anyway, I was also on potassium IV, which burns like a mother. I may have slept through it if all had gone right, except it was going through the huge IV in my left hand, and when the BP cuff on that arm went off and occluded everything, the potassium just sat in my hand/forearm, and woke me up screaming. I almost cursed him out for putting a BP cuff on an arm with an IV (you're not supposed to do that for that very reason), until I realized they *both* had IVs, so there was no other arm to put it on. The poor nurse (who was a good nurse, don't get me wrong. I just happened to not be in a good place that night) then tired to put the potassium in through the IV on the right, but I said I "didn't think I could take it". He must have slowed the rate down or something because then I didn't feel it and must have gone back to sleep. Or maybe he gave me some drugs and I slept, I don't know.

The next thing I remember, I must have yelled out that I was going to throw up or something, because suddenly my nurse was standing there with a bucket and I was heaving. He was telling me it was okay and that there probably was nothing there to come up anyway, then suddenly what must have been a liter or two of green nastiness came up. The nurse was like "Oorrr, you're full of bile!" Haha. That poor guy. My first post op night sucked. One good thing about throwing up, is I think that's when I got my new most treasured thing - my yankauer suction. When you feel like you can't control your spit, it's so nice to have your own "Mister Thirsty". I think there is a post op photo my mom posted of me with it.

That nurse worked really hard and had me weaned from both O2 and my BP meds that night. (Edit to add..) When he came in in the morning for one of the last checks on me I remember telling him that I had a dream that they intubated me again. He said "Aw, no we wouldn't do that to you." And I told him, very deadpan, "I wanted you to." I was still afraid of aspirating and angry, for some reason, that I had to work hard to breathe on my own again. (/edit)

The rest of my stay kind there kind of blends together. I remember a lot but not in any order.

I remember...
-chest x-rays the first and second mornings. The first one showed no improvement in my right lower lobe, which I would expect since I didn't get my incentive spirometer yet. I guess the second was better because I didn't get another one. (Edit to add..) I worked so hard on that spirometer, like a good little patient. It helped that there was nothing else to do. I had a nice routine of trying to clear my throat, suctioning with the yankauer, then doing 10 deep breaths on my spirometer. And then, probably, going to sleep for a quick nap because that was the extent of my energy.

-when PT came the first time and it took two PTs to get me out of bed and walk me down the hall. It was an Indian lady and a young guy (he was a PT student) with pretty blue eyes. I couldn't get my stupid left leg to walk right, and they asked me if I always walked pigeon toed, because I was then (I don't). They started me on my vestibular exercises, which involve holding a card with an X on it in front of you at arm's length and keeping eye focus on it while turning your head side to side, and then up and down. I could only do about 15 seconds before I felt like I was going to puke. The lady gave me a packet with exercises for home and asked me to read it over and I was like "yeah, okay", not really sure if I could read if I wanted to. I had Matt read it over when he came to visit. (/edit)

-discovering a painful pink spot on my right hip bone, probably from lying on it for 10 hours straight. I left it exposed to air and didn't let anything, even the call bell, touch it. I was so scared of an ulcer! Eventually a wound care nurse came to check it out and said not to worry since it was blanchable. It still hurts a little but it's not pink anymore.

-I hated that stupid foley catheter. I always felt like I had to pee. And when I mentioned that to one nurse, she recommended I "push it in a little more". I'm not a fan of UTIs, so I didn't like that advice. I was so happy to have that dumb thing out, even if the nurses weren't (it's easier to empty a foley then help someone out of bed every hour they think they have to pee).

-when my bed decided it was time for its maintenance and started to beep and wouldn't stop so they brought in another bed for me. I pushed up to kind of crab-crawl to the new bed and found myself swinging wildly, unable to really keep my balance or sence of spacial relations.

-when a nurse pulled my left hand IV and said "Oh that's why it hurts! They have a 16 gauge in this tiny hand!"

-Matt coming in to visit while a nurse was removing my A line, and me telling him to look away.

-another time Matt was there I was telling him about how I had overheard at some point (I think in that first wretched night when I thought I was dying) that I had gotten some extra anesthetic during the surgery because Dr T thought I was waking up. I was saying "I think it had something to do with my blood pressures or something" and the nurse said "Actually, it was because you started moving during the surgery." Awesome.

-being ticked off the first time my blood sugar was taken (because of being on high dose steriods for brain swelling) because the tech didn't wipe the first drop of blood away like you're supposed to. But then again of all the tons of times it was taken while I was there (they kept asking "Which finger?" like it mattered when they are all full of holes!) no one ever wiped that first drop away. I should write a letter to Hopkins to let them know.

-my nurse and the NP rolling me down to my MRI when transport was going to take too long. I think they hoped to get me transferred off the unit quickly, and for some reason the team decided I needed to have my follow up MRI before transfer (I'm not sure if that's standard or not but I got the impression they were just being extra careful with me since Dr T went out sick right after my surgery). Transferring from the bed to the MRI table was hard. I felt like I had no neck muscles and my head weighed 50lbs. I must have fallen asleep in the MRI (I was better medicated this time for sure, haha. I got IV pain meds right before we left the unit and I heard the NP ask the nurse to bring another dose with her just in case). I know I kept my eyes closed this time. When it was time to go back to the bed from the MRI table they lifted me on a sheet instead of having me transfer. I guess when they saw how little I am they decided it was easier for them to do it than me. After the results showed a fair bit of swelling and an "infarct", they decided to keep me in the NCCU. Of course, those are both normal for someone who just had brain surgery including part of their cerebellum removed (the "infarct"), so when Dr T came back in the next morning and read the MRI himself, he cleared me to go to the regular floor.

-Matt's dad's doctors, Dr Q (the neurosurgeon I originally saw) and Dr B coming in to check on me when they saw my name on the board. Dr B wasn't even sure we were related but saw the last name and figured, I guess, how many of us can there be? She asked if I was related to Matt's dad, and I said yes I'm his daughter in law, and she expressed her condolances and asked if there was anything she could do for me. It was very nice of them.

-the second morning (Thursday) the ENT team came in, they had me try to drink some water to test my swallow. After swallowing (or attempting to) they had me count to five. They thought my voice was too gurgly and decided speech language pathology needed to do a formal swallow test. I was pretty scared I wouldn't pass. When the SLP came, she had me start with some baby food apple sauce. I was able to eat it, so I got to move on to graham crackers iun tiny bites. I could eat that, too, so she declared me fit for a mechanical soft diet. Still, I was so happy to have my trusty suction at the ready, just in case I couldn't handle it. That fear of aspiration lasted a long time.

-one night a friend who works at Hopkins came up to visit me after her shift. I didn't want to keep my glasses on the unit with me, as I was afraid they'd get lost, so I couldn't see her. After saying hello I had to ask "Who is it I'm talking to?"

-Frank, the last day shift nurse I had, was so funny. One time I broke the "on/off" switch on my suction and he had to get me a new one. Another time, I decided to try to go from the toilet to the bed (approximately two steps) by myself. Both times he was like "Whoa, girlfriend!"

-and of course the frequent neuro checks. "Grab my fingers. Sqeeze. Push me out. Pull me in. ..."

-(Edit to add..) the wheelchair ride from the NCCU to the regular floor. My poor nurse had been working hard to get me transferred during the night shift and I had given up and fallen asleep. I felt bad because I knew my aunt, who was going to spend the night with me if I was able to get a private room, was waiting. When it was time we quickly gathered my little bit of things (and I had to say goodbye to my yankauer!), put the yellow bucket on my lap, and rolled down the hall. I was so dizzy and disoriented. That was the worst wheelchair ride ever. And I didn't have my glasses still so I couldn't see anything, either. I might as well have been on a loop-de-loop rollercoaster the way I felt, only it wasn't fun. In fact, I wonder if regular roller coasters will ever be fun to me again or if they will just be sickening. (/edit)

There's probably more but not that I can think of this second. I would love to get a copy of my medical record to see if it all sounds as eventful on paper as it is in my memory.

Three Weeks (and some days) Postop

A little late again. Oh well.

I've had two PT appointments so far. Mostly they've been testing me, and mostly I've done pretty good. They did recommend continuing with three times a week sessions, at least for the next four weeks, to work on strength on my left side and vestibular function (balance). Probably if I were old they wouldn't worry about it too much but since I'm not, it makes sense to try to work on returning to as normal as function as possible. Hoping to get back home soon to work on 'normal' things around the house. I put the baby's pajamas on tonight, and it took me forever and Matt had to do the pants over again because the footies got all turned around, but they got on. She wasn't quite patient about it so I joked about "incompetent mommy". But I think with practice I'll get this stupid left hand back up to snuff.

My major problem this week has been in scheduling stuff. I finally heard back from the doctor I originally saw (on Sept 29th) to do my eye surgery, and he can't do the proceedure until Nov 2nd. So then I called the eye Dr I saw last friday, and he doesn't think I can wait that long (neither do I), so he reffered me to a Dr in his practice that does the same proceedure. I thought I was told I could have it done this friday (tomorrow), and organized my PT around that, but when I went in to see the new Dr, he said he would do it *next* friday. So then I had to reschedule my PT and the start of my OT. Now OT won't start until Oct 30th. And I had another week with plastic wrap on my deteriorating eye. Darn.

I've learned to sleep laying down. So that's cool. Also cool, but gross, is the scab on the incision is starting to come off. It's a little scary, and itchy. Oh, and gross. But I hear it looks good.

Some things that are bothering me:
-tinnitus in the left ear. I hear nothing but white noise constantly.
-the left side of my face. I wish it would just move!
-my incision. It hurts.
-my left hand. It's stupid at doing things.
-my teeth on the left. They just feel weird and out of place.
-eating. It's tiring and takes longer than usual. The up side of this is I may finally loose my baby weight. The bad news is food is the best!

I also caught the kid's cold this weekend. Coughing, sneezing, and nose blowing are not comfortable things. It's slowly getting better, but very slowly. I'm afraid it might move into sinus infection territory.

Trying to get involved with the Grey Ribbon Crusade for brain tumor research. I'll let you all know when I hear about a walk-a-thon or something.

The Left Eye

I went to another doctor to check out my un-closing, un-blinking, creepy left eye yesterday. This guy is a regular MD who specializes in corneas and problems of this nature so he seemed to know what he's talking about / be an expert in this type of thing.

He said my eye looks pretty good, all things considered. I'm supposed to keep on the hourly eye drops (changed kind again - I never knew eye drops could get so expensive!), lacrilube ointment every 4 hours, and constant "moisture chamber" (the medical word for the plastic wrap held on with a ring of vaseline around my eye). He also added this prescription thing that's like a vaseline sprinkle we're supposed to put in my lower eye lid three times a day that grows and then melts to provide more constant moisture. It's weird and gross, but whatever.

A few interesting moments from the visit -
-When the tech was getting my history and then asked how old I am and I said "24", she looked SO sad. Like she was going to start crying. It would have been funny if it weren't actually pretty sad.
-The Dr half jokingly offered to sew my eye closed and I was just like "no".
-The Dr said "tell me when you feel this" and poked my eye with a piece of cotton a few times before I just shrugged and he stopped. I never felt it.
-I need to go sooner than later for my eye fixing surgery because my cornea could potentially 'melt', even with all these precautions.

He asked my 'prognosis' and I didn't really know what to say because I wasn't sure what he was referring to. I was thinking "well they said they removed all the tumor and it's a benign vestibular schwannoma, but that doesn't mean it can't ever grow back or I get another one, and besides, it already effed me up pretty bad", but what he meant was in regards to my facial nerve so I said "well, they said it's anatomically preserved but was pretty stretched out so we just have to wait and see." He nodded. He said, "Yeah I've seen this where the nerve is stunned and then wakes up, and I've seen this where the nerve is stunned and stays that way."

I know the docs speak very optimistically, but I'm thinking I'm going to be stuck like this for a very long time, if not forever.

Two Weeks Post-Op

Okay, so it's a little more than two weeks postop. But pretty close.

Things are slowly improving. I can walk! I get around the house pretty good and even did okay accompanying Matt and the kids to the park. I'm a long way from "back to normal", so it is very frustrating, but being able to get my own food out of the fridge is cool. I'm looking forward to a day when I can yet again manage two kids in a grocery store, which currently sounds terrifying and would likely take me the better part of the day, if I could do it at all.

I can also eat a regular diet. I was on 'Mechanical soft' in the hospital, which basically means you can have anything but it has to be pureed (and sometimes then re-shaped into a more 'classic' form, in the case of things like chicken breasts). The only thing is, like everything else, I'm very slow eating. I have to be super careful when swallowing because I do feel more apt to choke if I don't consciously think about each swallow. Also, I get tired because I'm only chewing on the right side. The left side just doesn't feel strong enough. I don't like to eat in front of people because I can't control what's going on on the left and sometimes food falls out. It's gross. But I don't have to eat with a towel on my lap anymore, so it's getting better. I'm working on drinking out of a regular glass so I won't always need a straw. At least I can drink with a straw without having to pinch my outh closed with my hand like I had to in the hospital. And this is all better than a feeding tube, of course.

The left side of my face still shows no signs of trying to move voluntaily. I forgot the other day and tried to whistle, only to realize I can't.

The worst part about this is it means I still can't close my left eye all the way. So I have drops to put in every hour, lubricant (essentialy vaseline) to put in every four hours (which I can't do myself because I touch my eye without knowing it), and I have to wear a "moisture chamber" (aka plastic wrap held on with a ring of vaseline) all the time. The good news is I saw the eye doctor last week and my eye looks good still. I see a corneal specialist tomorrow, and every week until my next surgery, which isn't scheduled yet. For this surgery they will put a platinum weight in my upper eyelid and lift my lower eyelid. I'm not happy about it. If I only needed the weight it could be done already since it's just an outpt thing. But with the lower lid thing they have to put me to sleep. Yuck. I'm also afraid that one day my face will 'wake up' and then my eyes won't be even. The weight is removable but I think the lower lid lift is a permanent thing. I like my eyes, saggy lower lids and all. Of all the cosmetic surgeries to have to have done for medical reasons, this is not the one I'd choose.
However, it will be nice to be able to close my eye and loose this plastic patch that I can't see through clearly. I think my lack of clear vision on that side is really making things worse as far as walking, dizziness, and general disorientation.

Also crappy is not being able to smile right, and not being able to speak 100% clearly. I scare myself in the mirror, so I know it has to be weird to other people. Big thanks to my family and friends for not looking at all horrified!! At least it is October.
I've been watching a lot of TV lately, and as much as I try to be reasonable, I can't help but just get angry looking at all the whiney people who can move their faces. I'm like "You Dummy! You can smile on both sides and you don't even care! It's not fair." Very not reasonable or nice of me, but still. Be thankful for the little things you can do. I'm so happy I can walk and talk and use the bathroom on my own. I guess I didn't think about it before.

My left arm and leg don't cooperate with me as they did before, and I have some tingling in my left hand. Don't know what that's about. I start outpt physical therapy next week so maybe we'll see then.

I've ridden in the car a couple times. The first time I got really sick feeling, but it's getting better now.

I hear my incision looks pretty good. I can't wait until it's all healed up because 1) it feels swollen and itchy and yucky, 2) I want to scrub my hair out really good, and 3) I forgot 3. I did have a three.

I forget a lot. Even more than preop. It's bad.

Oh yeah, 3) it scares me. I've seen opened incisions and they are gross. I just want one thing healed.

No idea if I'm hearing a tiny bit in the left ear or not. I think not. If I stratch my ear it sounds like nothing. It just sounds like an empty seashell all the time.

For meds, aside from the eye stuff I'm down to just tylenol. And I'm trying to cut that back. But no more decadron, protonix (goes with the decadron because it beats up your stomach), or oxycodone. The oxy didn't do much for pain butmake me more dizzy. So I'm down to my regular extra strength tylenol. Trying to go down to twice a day from four times, so as to spare my liver a bit.

Ouch, sneeze. Sneezes suck.

I'm still having to sleep sitting up in a recliner. I tried sleeping in a bed a ew nights ago and woke up feeling nauseated and bobble-headed (swollen) after two hours, so I'll try again in awhile.

Still hot all the time. My internal thermostat's busted.

Matt is the best. He's doing all the kids watching and stuff for them like laundry and baths and carting to sports, and then coming to my parent's house (where I am) to help me in the shower and let us all hang out awhile - back and forth. And even when I whine and am depressed he still seems okay and cheers me up. We are very lucky for our support system, we couldn't do it without them!

The Surgery - In Nicole's Words

I just went back and updated myself on my own blog. My mom did a great job keeping it going! Thanks, mom. :)

But here's how the surgery day went for me...
We got to Hopkins at 5:15 and checked in and started waiting. When they separated the patients from the families half of us went to one preop room, and the others (myself included) went "straight back", to another one. One of theother patients with me said "I don't want to go 'straight back'." They gave us a stretcher (I helped move my own), closed a curtain around it, and told us to "take everything off, put it all in the bag, put on the gown with the opening the the back, and wait for a nurse." It stunk in that room. It reminded me of the smell in the science lab when dissected sharks in 6th grade - like fish and preservatives. Everyone around me was seen by a nurse, had an IV started, and was allowed to have their families with them. Finally my nurse came, and finally the phlebotomist came, and finally they let my family come. I was upset to have an IV in my hand, that already hurt, since I have good forearm veins, but was trying to be a 'good patient' and go with the flow. I was just afraid they wouldn't let me see my family before taking me back.
All the docs and everyone came through, as my mom posted. I was glad everyone else looked happy and well rested.

I think I was the first patient to leave preop for the OR. The circulating nurse and anesthesia student/fellow/whoever wheeled me back. They warned me about the cold and I was like "I know", and explained what I do.

There must have been about seven people already in the OR when I came in. I transferred to the OR table, which all kinds of pads and positioners and egg crate stuff on it. They put the arm boards on and started 100% O2. The anesthesia person with the mask said "I'm going to do some more chin tilt" and really had the mask on there. I felt like I could breathe in but not out and got scared and started to shake. I felt something tingly being rubbed on my right forearm, and a nurse holding my hand (thank goddness!), and then I was asleep.

The next thing I remember everything was dark but I heard people talking and I was coughing and coughing and couldn't stop. I remember opening my eyes in the NCCU with people all around. I felt like I was inhaling all my saliva and couldn't stop coughing, though I thought to myself "You have to stop, it's not good for your ICP (intracranial pressure)!"

I remember my family coming in and they loooked so happy and said how good I looked. I felt confused because I felt like sh*t. I told Matt I wanted to die and he said "no you don't." So I told him "well I at least wish I was having a baby." Having babies ain't no thang. I don't know about this brain surgery stuff.

I don't know if I caught bits of what people were saying or made it all up, but I started to feel like my left upper lung lobe was filling with fluid and I couldn't clear it. I thought "fluid overload!" I felt like I could barely talk but needed help, so I started grabbing at stethescopes (at least, this is how it happened in my mind), putting them on my chest saying "listen! I'm drowning!"

They did a stat chest x-ray in bed and drew arterial blood gases (this is when I asked the nurse "I have an A-line?"). They turned out not too horrible - right lower lobe atelectasis and a pH of 7.43 is all I heard. Luckily they did a neb treatment that settled down the coughing and let me go to sleep when my family left. I think I asked for throat spray and they told me no. They all must have thought I was crazy!

More later... but now you can see why it was a little traumatic for me from day one.

The 10th day Post-Op

Well, all. I was hoping to make a huge return to my blogging around now, with my own day by day of whst I can remember of the last ten days, but I'm not sure how it's going to work. As it turns out, typing is really hard. Maybe I'll go to video.

I just wanted to say that I am okay, but everything is pretty hard right now. It really is going to take a long time for me to recover. I don't know why, but I honestly wasn't expecting post op to be this bad.

Some great things at this point -
-I can swallow, and now can chew most things if I really concentrate.
-I can walk from the couch to the bathroom unassisted.
-I can walk all the way down the driveway and back, with a helper.
-I can move my jaw to the right AND left.
-I think I can hear a little in my left ear.

Some crap things at this point -
-The left side of my face is still pretty paralyzed (I last overheard my House-Brackmann score as 5/6 ... bad.)
-My left arm and hand are pretty weak and worthless.
-My left eye still doesn't close so I still have to wear plastic wrap on it. (I'm assuming these are all things my mom mentioned at some point.)
-My body feels like it was hit by a truck. My head feels like it was beaten with a bat in the back. Meds don't really work.
-I'm almost always hot and sweaty (but no fever!).
-I sleep a lot, but am having crazy dreams constantly and wake up with a start.
-I always, always feel like I am moving. I'm usually nauseated.
-I can't pick up my kids.

But the best thing is I'm not telling Matt to "pull the plug" anymore, so it must be getting a little better.

And that about wore me out for tonight so I'll return to the recliner couch I've been camping on (I also can't lay flat).

Thank you, thank you, yet again. I did get all the messages and pictures. I'll get to everyone personally eventually. Please be patient with me, I am extremely slow. (I feel like I need my picture on a Smucker's Jar with Willard Scott.)

Love,
Nicole