[past] rehab hospital, part I

good news: there's a bunch of pictures and videos in this post! sorry for the lack of visual components up to this point. :]

like i mentioned at the end of my last post, my time at the rehab hospital was very difficult, but also very rewarding. 

but also very difficult. 

a lot of big things happened during my first week at OVH. nearly right after i arrived at my new home, Troy showed up sporting a pretty sweet mohawk -- a sign of support for my impending hair cut. (and probably a bit of encouragement to take the shaved head route since i was balking at the idea, even with half my hair already gone.) 

a CNA arrived soon after to get my vitals and weight. i was shocked when he said that the bed scale was weighing me at 107 pounds. i told him there was no way that was correct! i mean, i know i hadn't been eating much, but i was 125 pounds before this whole situation started. how could i have lost nearly 20 pounds in less than a week? i didn't believe that scale until i saw pictures of myself many weeks after (see below). throughout my whole hospital stay, my family offered to get me anything i would actually eat. the In-N-Out across the street got some business on my behalf.

on Sunday, a physical therapist named Eric came to evaluate me. i was so happy to see that he was a younger therapist. because the median age of the patients on my unit was 85, i was worried i would be treated by somebody who wasn't current with therapies for younger patients. Eric was super friendly and was excited to treat me. he said all the other PTs were going to want to have me since i was young and had a great potential for improvement, but he said he would make sure he got to keep me. 

On Sunday evening, i  finally agreed to let my sister Alicia break out the clippers and buzz my head. Troy and most of my family gathered in the little bathroom to take part in the experience, and those who couldn't be there physically joined via Skype. some of the nurses even peeked in. we made sure to take lots of pictures and video of the whole process:

the before: looks like normal hair on one side...

the other half

my biggest supporter

rockin' the punk bangs

my sis, Angela, trying to make the bangs work

despite my smile, i was sad to see it go

while i held up pretty well during the shave, i broke down toward the end. i had a difficult time seeing all my hair go -- and not even in an all-girls-love-their-hair kind of way. it was more that i hated seeing myself bald because it made me look sicker than i thought i was. or was i that sick? i didn't like to think about it. there were some advantages to my freshly shorn noggin, though: first, i found out that i have (or, had) a rather perfectly shaped head, which elicited many compliments from visitors and hospital staff. i also got to go back to my natural hair color in a very quick way (something i had been meaning to do anyway). on a more practical note, the buzz was easy for me to care for with only one working arm. 

after the shave, Troy left to drive the four hours back to Flagstaff -- a trip he would take many, many times over the course of the next year plus. my mom stayed the night with me on another uncomfortable makeshift bed -- something she would do nearly every night of my three-week stay. even now, i am so thankful for the sacrifices my loved ones made for me in my time of need. 

there's so much i want to remember about rehab. if you get bored and quit reading, i totally understand! for the purposes of remembering, though, i think it's important for me to type this all out.

the menses

what? you're hesitant to read something with menses in the title? ok, i might not blame you. it's important for me to include it in my blog, though, because it marked some interesting feelings during my hospital stay. i'm like any other female: i hate cramps. when i felt the first tinge of cramping after i arrived at the hospital, however, i can't really describe how good it felt. it was painful, yes, but the pain was something i was familiar with. everything since February 21 until that time was completely unfamiliar -- and scary. my period, though? i knew that. i knew what to expect. who knew Flo could actually be a relief?

Grams

after the first few days, i found out that my family had not informed my Grandma White about what had happened to me. because Grams had some heart problems, they did not want to tell her until i was out of the woods so that she didn't get too worked up. my parents wanted to keep waiting to tell her, but i insisted that she know. i knew Grams had great faith, and i knew her prayers on my behalf could help me. so, after dinner on the Friday after my arrival, i called Grams myself. we figured that if she heard my voice, she would know that i was ok and would maybe take the news a little better. just in case, my dad arranged for one of her friends to be next to her during the phone call in case she got too distressed. 

i was very nervous about setting Grams off on a heart attack, so i did my best to sound like my normal self. when i explained what had happened, i was as upbeat and positive about my recovery as i could muster (even if it didn't necessarily match what i was feeling). Grams was very shocked, and told me she had to hang up because she couldn't handle what i was telling her. oh, no! what if she dies because of what i told her? thankfully, Grams called me back and i was able to explain things to her more fully. 

spasms & Baclofen

up until i called Grams, i hadn't really rehearsed my entire story to anybody, nor had i really thought about it in that much depth. between the emotions of rehashing the scariest days of my life and the nerves associated with calling Grams, my body did not react too kindly. if you recall, i had already been having strong spasms in my leg -- that was nothing new. what was new, however, was their intensity. the weekend was filled with many, many instances of uncontrolled shaking in my leg and multiple panic attacks. (ok, it was actually one really long panic attack.) the two did not work together well at all; the more panicky i felt, the stronger my spasms were. 

Eric (my PT) had tried to convince me prior to this point to start taking a muscle relaxer called Baclofen. he explained that, with the medication, i would move better in therapy and my spasms would diminish. i wanted nothing to do with Baclofen, however. i didn't like the thought of putting more drugs in my body, and i was not keen on the side effects, particularly the fatigue and sleepiness. as much as i resisted the Baclofen, my spasms were literally out of control -- not even Troy could hold my leg down. i finally gave in and took the pill. the spasms did decrease over the next couple days, and while the meds definitely took a toll on my energy level, my therapists promised me that i would get used to the feeling and would establish a "new normal" in my life. (fyi, i miss my old normal!)

i would be remiss if i didn't include the part about Baclofen making me drunk. apparently, it was necessary for me to take this medication with plenty of food and water. before i realized this, though, my mom and Troy got to witness my drunkenness. mostly, they just laughed, and i couldn't blame them. i was stupidly slaphappy and would laugh for minutes at a time for no reason. i think this side effect came at a good time to cheer us up. :]

therapy

my first few days of therapy were incredibly challenging. i couldn't make it through a single physical or occupational therapy session without crying. i'm sure my therapists thought i was unstable emotionally; which, to be fair, i guess i really was. in addition to my lifelong struggle with anxiety, i have also had some run-ins with depression. about seven months before finding myself in the hospital, i had finally weaned myself off the antidepressant i had been taking for a few years. i finally thought i was strong enough to get by without it. so, take the fact that i am prone to depression and have anxiety and mix that with the normal, expected feelings of somebody whose life has just been flipped upside down: that was me. i was absolutely overwhelmed. the rational part of me knew there was hope, but the depression stifled it. thankfully, my psychiatrist called my mom around this time to see if there was anything he could do to help me. why, yes! i was quickly started on an antidepressant.

every weekday during my entire stay, i attended three hours of intense therapy. usually, the mornings were reserved for OT since many of my ADLs (activities of daily living) took place then. i was blessed to have a wonderful COTA (Certified Occupational Therapy Assistant) named Ashley who was the same age as me. this made the naked parts of therapy (showering, dressing) so much less awkward than they could have been! i was also treated by other COTAs and OTs, all of whom helped me make huge gains in gross and fine motor control of my upper extremity and in learning how to compensate for my hemiparesis. it was (and still is) amazing how my therapists' seemingly simple tools and ideas made such great dents in my recovery. for instance, just by applying pressure against my hand and asking me to try to push back against the resistance, i was able to extend my elbow for the first time. and, knowing that i loved baseball and softball, their idea to roll a ball down a board and challenge me to extend my wrist to trap it between my palm and the board proved the most successful of many attempts to help me move my wrist. 

for PT, the focus was on getting me up and walking and strengthening my lower right side so i could improve my balance and endurance. Eric had me on the table mat on my knees, on all fours, on my stomach and on my back. it was surprising how horrible my balance was at first, and i fell on the mat many, many times. (quite frustrating!) he also had me work at the parallel bars and on a set of steps. i spent a lot of time learning to walk again -- first by moving my feet to scoot my wheelchair, then by wearing a brace and using a quad cane while being anchored to my therapist with a gait belt, and then by losing the gait belt and hoping i didn't eat it. 

mat work

this day was SO windy. i thought i would fall over at any moment

when i saw this pic, i realized how much weight i really lost.
no bueno!

at this point, i had little control of my butt, hips, and hamstrings, and no control over anything lower. since my calf muscles weren't working, my knee was hyperextending somethin' fierce. with the help of the AFO, the cane, a lift in my right shoe and some major concentration, i was able to make some progress with walking. at the end of the three weeks, Eric's goal was for me to be able to get myself off the floor -- kind of in preparation for if i ever fell at home and nobody was around to help me. i figured i could accomplish this task because i knew my left side was strong and could compensate for my right side. turns out i was wrong! it actually took a couple months after leaving the hospital for me to be able to pick myself up off the floor (no pun intended). he also wanted me to be able to get into and out of his motorcycle sidecar, because, why not. that goal was a success, and i have pics to prove it. :]

apparently, it was against the rules to take me for a spin :[

one more thing about therapy: i know i've mentioned it was frustrating, but it was also utterly exhausting -- and not any type of exhaustion i had ever felt. my body was tired, yes, but it was my brain that was the most drained. when i first got to OVH, i was told that i would need to rest in between sessions of therapy. i didn't understand why until after my first session. trying to move even one of my lifeless body parts required the most intense focus i had ever exerted, resulting in an incredible fatigue that i can't really describe. 

thank goodness for TV and the Internet

between the Baclofen and fatigue from therapy, i always wanted to sleep when i wasn't with PT or OT. for the first time in my life, though, i could not nap. at all. (if you know of my affinity for snoozing, this should surprise you as much as it did me.) no matter how hard i tried, sleep was elusive. 

instead of sleeping, i tried reading; that, too, was a bust. because of my panic problems, i was so worked up at all times that i couldn't calm down enough to sleep or focus on more than a couple sentences of a book or magazine. my racing thoughts never slowed, but were instead filled with a constant stream of fears about having another stroke or getting sicker. my heart felt like it was beating as quick as a hummingbird's, even while i was in bed and trying to relax. the only peace i could find (most of the time) was by looking at stuff online or watching TV. the mindlessness of both activities somehow provided a brief reprieve to my worried mind. luckily, Bones was on almost every night, so i got to introduce my mom to one of my favorite shows. :]

more about my stay at OVH in part II…

[past]: the operation and off to rehab

the night before surgery, my family and Troy gathered in a small staff room so we could have family prayer and so my dad could give me a priesthood blessing. i knew if the surgery was to go well, the Master Physician, Jesus Christ, could make that happen. just like He healed so many people when He was on the earth, i knew He could heal me. in my church, we believe the priesthood is the power of God given to his children to use worthily. in essence, a blessing from my dad, if he was worthy and if i could have enough faith, would be as if Christ himself were saying the words my dad said in the blessing. among those words, i was blessed that the surgery would go well, that the surgeon would take out everything from my brain that didn't belong and that i would one day be able to run and move like i used to. what wonderful promises if i can have enough faith in Christ!

although i was still nervous for the surgery, i was actually beginning to feel at ease. i realized that everything was in God's hands, and that whatever He wanted to happen to me would happen.

originally scheduled for early afternoon, my surgery did not take place until the evening of March 2. the day before, a doctor measured my head and marked it with colored lines and dots that would help him place specialized equipment on my skull so he could assist Dr. Weinand with where to touch my brain and where to avoid. the morning of the surgery, my sister Angela woke me up early to remind me to eat one last meal before i couldn't eat or drink anything. i tried to eat cold cereal, but my stomach was a tangle of nerves. i spent much of the day sleeping, praying and trying to relax.

as the surgery drew closer, i felt more calm. i remember praying and asking Heavenly Father to help me live though the surgery. i promised that if He would let me live, i would spend my life as a witness to the healing, miracles and peace brought about in my life through faith in Jesus Christ. that is one of the reasons i started this blog. :)

i was wheeled to the pre-op room, where i waited with my parents for over an hour. i managed to stay remarkably calm. i had a very kind nurse who was from India. she put a cap over my hair, searched my arms for places to insert new IVs and an art line, explained the timeline of the operation and chatted with me. an anesthesiologist briefed me on the drugs she would give me. young med students flitted around on the other side of the room while tending to an obstinate (and hilarious) old man, and i felt a twinge of jealousy for their good health.

sporting a sweet cap and waiting for my turn in surgery

finally, it was my turn. the anesthesiologist gave me the first round of drugs that were meant to relax me. i was then wheeled out of the pre-op room to a spot above which hung some mistletoe. this was where i was supposed to kiss my parents and go on to surgery. "see you on the other side!" i joked. whether the other side of the surgery or the other side of death, i figured i would be correct. it was then on to the operating room. i vaguely recall a few details: lots of people. metal tables. bright lights. someone addressing me. and then, sleep.

according to my family, i was in surgery for about 3.5 hours. Dr. Weinand had estimated it would take twice that, so my family and Troy were surprised and pleased when he came back early with the good news that he "got everything" -- meaning bits of tissue and the blood that started this entire journey. he further explained that he didn't know what the mass was, but that he would send it to pathology to be evaluated.

everyone came to see me in the recovery room. i apparently said some things, although i don't remember this part at all. Troy tells me now that i got a CT scan, but the first thing i recall was what came next.

i guess i had expected to go through the whole clawing-my-way-back-to-consciousness process in a hospital bed, so i was somewhat surprised and pretty dismayed when i woke up while being loaded into the MRI machine. i wasn't with it enough to protest, but i remember being nervous nonetheless. my dear mother tried to plead my case to the doctors; she knew how difficult MRIs had been for me and didn't think it was fair for them to put me through it again right after surgery. despite her efforts, i wasn't getting out of the MRI. like it had done in the days leading up to surgery, my right leg began violently spasming before the MRI commenced. the MRI attendants were finally able to bend my leg and tape it in that position so i could remain still during the procedure. while inside the obnoxiously loud machine, my mom stroked my left foot -- her way of telling me she was there for me and that i was going to get through those tense 40 minutes.

i woke up again on March 3 in the late morning. this time, i was in a room brightened by a few rays of the Tucson sunshine, and a male nurse was offering me a plastic cup of some suspicious orange liquid. "your potassium is low, so you need to drink this," he said. to my own amazement, i didn't ask any questions, but instead took to swallowing the rather nasty orange-flavored drink. Troy soon came in, along with a few family members (i think!) to greet me. i found out i was in the pediatric ICU and that just a few weeks earlier, Gabby Giffords had recovered in the very same room after her miracle surgery.

between my noddings off and wakings up, my male nurse made sure i was comfortable and lightened the mood with his heavily sarcastic jokes. i was in pretty good spirits until…dun, dun DUN!…they said they were going to remove my catheter. (side note: i had never had a catheter before, and the feeling of releasing liquid but not really peeing was crazy!) instead of the male nurse performing the removal, a CNA was asked to do it. by this time, my sister Alicia was in the room, and thankfully so! since she is a nurse, she noticed that the CNA was about to yank the catheter out without properly deflating the balloon. Alicia stepped in, guided the CNA (who had never removed a catheter, come to find out) and saved me a whole lot of pain down below. gotta love having a nurse in the fam!

with less than 24 hours of ICU time under my belt, i was returned to my hospital room on the 6th floor. there, i got a glimpse of myself in the mirror: the left third of my head was completely shorn, and the rest was covered with a gnarled, bloody mess of hair. i still had colored marks on my scalp and forehead, as well as a small bloody hole in the center of my forehead -- which we assumed was where some sort of measuring or monitoring device was anchored during surgery.

once i started feeling more with it, i asked my nurses if i could have a bath. i wanted to get the stinky blood out of my hair, and, oh yeah, take care of the more than two weeks of leg and pit growth that had accumulated. (now when i tell Troy that i really need to shave, he reminds me that he has seen much, much worse!) a wonderful CNA named Katherine offered to give me a bed bath, and my mom volunteered to do her best with a crappy hospital razor. together, they then tried to comb through my matted hair and wash it without disturbing the fresh, five-inch scar on the left side of my head. eventually, scissors were brought out to cut off the sections of hair that were way too matted to save. in the end, i was left with uneven yet reasonably clean hair on my right side. apparently, according to Troy, my head smelled like sawdust despite the wash. better than blood!

on Saturday morning, less than three days since my surgery, my discharge paperwork was in the works and i was being prepared to move into a rehab hospital where i would undergo intense therapy for about a month. after learning about the various rehab hospitals in Tucson, my parents and i decided on Oro Valley Hospital, mostly because it was close to my parents' house -- a welcome change from UMC.

in the afternoon, i said goodbye to my nurses, my family and Troy and was loaded into a medical transport van driven by two middle-aged men. i tried not to let me nerves show, but my heart pounded all the way to the rehab hospital. i was so scared that my body would turn on me again; after all, i was barely out of surgery and wasn't completely convinced that i was in good enough shape to be moved yet. i was familiar with the route the drivers took and pleaded with traffic to abate and lights to turn green so i could quickly get to safety. finally, we arrived at OVH. i was wheeled to the third floor, inpatient rehab unit, room 343: my home for the next month where i would struggle immensely but also make more progress than i would have ever expected.