Day 2

Around 8 am the nurse asked if I wanted breakfast. YES! YES! YES! It had been 32 hours since my last meal. Feed me! I was a bit worried that I would throw up like I did with the ice chip but I was willing to try. She increased the incline on my bed (It was always set at at least a 30 degree incline) and brought over my tray.

There was milk, juice, (she lifted a tiny tray), biscuit, sausages and… huh??? Obviously there were eggs on the plate at some point. However, either someone ate the eggs or they scraped the eggs off as an afterthought. I strongly believe it was the former. She then mumbled something about the eggs to the other nurse. However, she was trying to play it off.

“Do you want this?” Oh no, honey. I know something is wrong. I can’t hear very well, but I know someone ate those eggs. I said I wasn’t going to eat from a plate that someone else had. A male nurse came over and asked me what I wanted for breakfast. I asked him what my options were and he said I could have anything I wanted. Now, I don’t like eggs that much but you best believe that I wanted eggs that day. I asked for eggs, bacon, sausage and yogurt since I wasn’t going to drink the milk. It wasn’t until after breakfast was (re)-delivered that I realized I forgot to ask for biscuits. That biscuit looked yummy. I wonder why the other person didn’t eat it.

I ate breakfast like a starving child. Shoveling food in my mouth. Almost choking at several points. My throat was extremely dry (later it occurred to me that a tube had been down my throat during surgery hence the irritated throat). As I shoveled things in, I noticed that my hand eye coordination was a bit off but it didn’t slow me down. During breakfast, someone came to take me to do an MRI. She kept pacing in front of me while I ate and I wondered if it was her way of telling me to eat faster. She kept giving me looks too. But then she mentioned that she needed someone else to help her with my bed. That started quite the discussion.

Why is she being sent to MRI in her bed? Why not a stretcher? What happens after the MRI? Where do we take her? Is there a room ready? Is there a bed in the room?

Eventually a man came to help with my bed. However, he told me to eat slowly because I had visitors coming. Additionally, the first lady who was there to go with me to the MRI had disappeared. She then returned and the nurse insisted that they take me immediately. “But she has visitors coming.” “We’ll tell them where to find her, just take her.” OK then.

As they wheeled me out, I saw my mother, PT2 and Sue. They walked with me down to radiology. At radiology, the bed discussion started again. “Why are you bringing her in a bed?” “We cant push the bed in there.” Blah. Blah. Blah. Eventually, I was lifted from bed to stretcher. OUCH. The stretcher was wheeled into the MRI area. I was then lifted from stretcher to MRI table. OUCH. She then put ear phones on so I could listen to music during the MRI. However, they weren’t working.

Let me just say, an MRI after you have had brain surgery is NOT a fun experience. VERY uncomfortable. Pound. Pound. Pound. I willed myself to remain still and decided to try to sleep while they did it. To me, the entire process only took 20 minutes or so. However, my mother told me that it was over an hour. I guess during all the waiting and bed discussion, I fell asleep. Who knows. I do know that my sense of time was very off during the first couple days. They then injected me with the contrast for the 2^nd scan. During my first MRI, I got sick when they injected me. I don’t know if it was a full blown allergic reaction. However, within seconds of the injection, I threw up and felt ill for the rest of the day. The doctor came to see me and advised me not to have an MRI with contrast ever again. Well, I thought to myself then, I don’t ever plan on doing an MRI with or without ever again so it is not a problem. Little did I know that that first MRI would find Mr. Epidermoid Tumor.

Anyway, after the MRI, it was another debate. What do we do now? Uhm. Take me to my room? What is the room number again? Uhm, 937. Are you sure we need to take her in the bed?Excuse me? Am I the only person who was listening to the nurse? Even when we got to the 9^th floor they still seemed confused. There was hesitation outside my door before they wheeled me in.

At this point, I assume it was close to midday. But I was finally in my room. I can’t remember many specifics about Thursday. I got my phone back and was finally able to look at text messages and check facebook and twitter. PT2 still had the job to keep them updated though. And my mother was not happy that I was spending so much time checking my phone.

In the evening the Angels came to visit. During their visit Dr. Morcos (my wonderful neurosurgeon) also stopped by. He did the can you hear me now, the smile test, follow my fingers, squeeze your eyes tightly and whatever else. He then told me that I had stage 2 facial paralysis. (note to self, make that sentence linkable). I didn’t think much of it. After all, everything seemed to move just fine to me. Facial paralysis is measured on a 6 point scale – 1 being normal and 6 being full paralysis. If I was at a 2, then life was good. I didn’t even ask at the time what exactly was paralyzed. Later I noticed that I couldn’t squeeze my left eye as tightly as the right. But when do you ever need to squeeze your eyes tightly? I would soon find out. I think it was Friday that I noticed my bottom lip was paralysed.

Dr M then asked the nurse to give me an eye patch. Sweet. Pirate PT. Sweet. Dr M warned me to be careful when I ate and to eat moist food since my throat was probably really dry after surgery and swallowing could be difficult. Right you were, doc.

My mother spent Thursday night with me and I felt so bad. The chair was obviously uncomfortable. I wished she could have just gotten into the bed with me.

Now, I was getting medication and blood pressure and temperature checked about every 4 hours from what I could gather. Decadron for the swollen brain, Tegretol to prevent seizures (this was used to control my TN pain pre-surgery too) and Heparin (If you watch House, MD, you know this is a blood thinner). The Tegretol was taken orally and the decadron was at first put into my IV (I think). J, my nurse, said that I would be switched to oral drugs and wouldn’t need my IV anymore. However, they still left the one on my right hand in, albeit on a shorter, very-annoying-when-washing-hands tube.

Yaay oral drugs. Wait. Wait. Where are you going with that needle? Apparently, while Tegretol and Decadron came in pill form, good ol’ heparin had to be injected. Uhm, can’t we just put it in the IV? It is still there you know. It must be there for a reason, right? Apparently, just for decoration. J asked if I wanted the heparin in my arm or my tummy. Tummy??? Are you nuts? Take my arm! I am not afraid of needles. However, I can’t look at my blood being drawn – I get ill (I think that was what happened with the first MRI. Looking just doesn’t work for me). But that Heparin H U R T. And kept hurting for a while.

That night, my night nurse came to give me the Heparin and asked me to roll up my gown so that she could give it to me in my tummy. NOOOO. Can we just put it in my arm like the way everybody else does it? “No! I do not give heparin in the arm! You either take it in your tummy or not at all!” OK then. She scared me. It hurt so much worse in my tummy. It felt like she had left the needle in my tummy. Weeks after that injection, I still had a sore, hard spot.

Running out of steam

I feel like I am running out of steam with this surgery recap bit. Sigh. So much more to tell but I just cant seem to get around to tell it. I'm only on the first night! That is only April 21! I think I wrote Day 2 already so I am going to post that. Maybe I will post another 2 entries about my hospital stay after that.

I really wanted to get into details about my experience with Bell's Palsy as it was hard to find people describing personal experiences when I searched. OK, it wasn't hard to find, I just wanted more, more, more.

We'll see when I get to this. Hopefully soon as there is the matter of a 2 months later update that is ready and waiting to be posted. Can I get it done this week? I can surely try.

First night

It was hard to turn my head in the bed because it felt extremely heavy – almost too heavy to lift. I got tired of being on my right side and asked the nurse if I could turn to the left. Now please note, that they just cut into the LEFT side of my head and I was requesting to be turned to that side. I was I that restless. The nurse said I could turn to the left but I could only do it for a short time. I decided not to because the energy required felt more than the momentary relief. Plus, I had two very uncomfortable IVs in my left hand – one was my A-line.

To pass the time I did some pilates (imprint that core!) I wasn’t tired enough to fall asleep so I really had to entertain myself. When I did try to fall asleep, it was just much too loud. My blood pressure cuff would start up every half hour (my groggy estimate). They were trying to get my blood pressure below 130 before I could be moved to a regular room. (Pretty sure, it never ever went below 130). To prevent blood clots in my legs, I was wearing little leg massager thingies (maybe there is a fancy term that includes deep vein thrombosis). Those were constantly going. I kept moving my legs a lot so I could have done without the massagers and still be safe from clots. Many times I was tempted to ask them to remove them.

Then ever so often a nurse or someone else would come and talk to me. About 3 or 4 doctors from neurosurgery came by and did quick neurological exams. Follow my finger, smile, can you hear me now? Oh did I mention that I had double vision? I don’t remember looking and thinking – oh, I have double vision, let me close one eye. It felt almost instantaneous. Maybe this was because I was expecting it.

At some point, I heard the nurse talking about moving me to ICU. However, there didn’t seem to be a bed available. Looked like I would spend the night in recovery. Later, they moved my bed to another section. The man who moved my bed said the nurse was alone in that section so they were moving my bed so that she could have company.

I started feeling the urge to pee. BADLY. I wasn’t sure what to do. I remember reading that they would insert a catheter into me and from the feeling of things down yonder, I assumed a catheter was in. But what do I do? Just pee? That felt a little odd. However, I hardly thought they would get me out of bed and take me to the bathroom – due to that pesky brain swelling bit. When the nurse came over to check on me, I told her that I really needed to pee. Her response – just pee. But… uhm… OK. I tried. I couldn’t. It just felt “wrong.” However, I guess I did do it. And do it a lot. Later there was a flurry of activity. The nurse checked my A-line, checked the monitors then ran back to discuss things with her nurse buddies. I wondered what was wrong. I wanted to ask but I was kinda scared to hear bad news. I didn’t feel sick but what did I know? My blood pressure could have sky rocketed. My blood gases could have been plummeting. Anything could have been happening – even an infection. Later, I overheard that she was worried about the amount of urine in my bag. Apparently, I peed A LOT. I guess I hadn’t peed throughout surgery and all the fluids they pumped into me finally came out. TMI? Oops. I don’t know if there was anything else that was disturbing her. I guess I will never know.

Around 6am, there was a shift change. My new nurse told me that I would be moved to a regular room – go me! Skipping ICU! She then asked if I wanted her to wipe me. Sponge bath alert! Now let me just say, one of my biggest worries about being hospitalized was having people (strangers and familiars) touch me. I don’t like people touching me. When I did an ECG during pre-op, I nearly died when the nurse had to touch me to put the gel pads on. *Shudder.* I don’t even hug people that much. However, I wanted that sponge bath. It had been 24 hours since my last shower. And I hadn’t worn deodorant in much longer than that. (I couldn’t use deodorant or lotions or any such before surgery). Wipe me down sister!

She got her little rag and in 20 seconds she was done. Huh? What? That’s it? She gave me some quick swipes of the genital area (“to prevent infection”) and then she was done. Hold up. I allowed you to touch me for that half-assed sponge bath? But then she said I would get a better one when I got to my room. OK. Good. Because momma likes to be clean.

Let's roll!

Roberto took us through a maze of corridors and doors and elevators. He reassured my mother that he would take her back to the waiting room and she would not need to navigate the maze herself. Good thing too, because my mother’s sense of direction is THE WORST.

I was taken to some sort of pre-op waiting area and directed to a bed. On my bed was a bag and the nurse instructed me to get changed. I went to the bathroom and changed into my gown, cap and socks. For more than a moment, I wondered if I should keep my panties on. I remembered hearing about people’s butts showing through thin hospital gowns so that seemed to mean that I should take it off too. But it was brain surgery, they didn’t need access to there. Oh wait, there is that catheter that they will insert into me. Debate. Debate. I went with commando. I am pretty sure that was the correct choice.

I went back to the bed and jumped in. It all just felt strange – almost as if I was watching it happen to someone else. It was not hitting yet. I was mainly concerned about my mother. I didn’t want her to worry. If I could have had this surgery without her ever finding out, I certainly would have.

Eventually, a nurse came and checked my information and gave me a name bracelet.(We later noticed that my name was spelled wrong and they had to get me a new one and change the information on several forms). Then another nurse started the IV in my right hand. At some point, someone asked me how I was doing. I can’t remember who. I met several nurses and doctors at that point. I tried to make a mental note of time and names for the sole purpose of blogging but that was 7 weeks ago, I have already forgotten. There was operating room nurse, doctors from anesthesia, neurosurgery doctors and nurses who didn’t identify their affiliation. As I was saying, someone asked me how I was doing. I noted that I was fine and that the only part I disliked was the IV being placed in my hand.

The nurse doing the IV got irritated! “It doesn’t hurt! It doesn’t hurt! You are fine.” Tone is everything people. My mother and I exchanged looks and bit our tongues. Oooh, I remember who asked now. It was an anesthesiologist. After I responded, he said that my other IVs would be put in while I was knocked out so I wouldn’t feel them. Other IVs? You mean one isn’t enough? What had I gotten myself into?

A few moments later, I noted that I did not have my MRI CDs. EPIC FAIL. You can’t have brain surgery without MRI images for the doctors to use to navigate your brain, missy. I had left them in my bag in the waiting room. IV nurse to my mother – “why don’t you just go get it?” Tone again people. Tone. My mother gave her a dirty look. Remember that maze of corridors and elevators and doors? She wanted my mother to go navigate that? We had someone call down to patient hospitality who relayed the message that I needed my bag to my friends in the waiting room. Sue eventually brought my bag upstairs.

The hospital chaplin came around 7:30 and asked to pray with us. I was extremely happy for that. Things had happened so quickly before in the waiting room that we didn’t have a chance to do that.

Next, we waited for my doctor to show up. Everybody was ready to go but my doctor hadn’t arrived to sign certain documents. The operating room nurse was adamant that he had to sign the documents and not anybody else on his team. Stickler for the rules. She was getting a bit antsy that he was running later than usual. Typically, he would already be slicing and dicing at that hour.

He eventually showed up (of course) and signed the required forms and checked over my chart. He asked me how I was doing. I said I was fine. I felt fine. Never mind that my blood pressure was high. He shook my legs and told me that it was OK to be nervous, I had to be. I smiled. I really like that guy. At some point he noted that he hadn’t seen me since October. Oops? Well, apparently not.

Papers signed. Ready to roll.

Roberto came to get my mother. All the docs and nurses lined up on either side of my bed. One anesthesiologist said he was going to give me something to make me relax and not be nervous. He reached over to my IV and put something in. I glanced at the time. It was probably 7:50ish. That was the last thing I remember.

Now let me just say that I am pissed about this. What happened to being in the operating room and being told to count backwards from 100? I was oh so ready to say my ABCs backwards! I felt cheated. I never saw the operating room! The medicine was supposed to make me relax, not knock me out instantly! He lied to me!

D-Day

I expected to be panicking and worried and stressed during the weeks leading up to surgery but I never felt it. What I did feel however, was P A I N. My trigeminal neuralgia was kicking my a..well, face would be the correct body part. The night before, I expected to have trouble sleeping. However, I didn’t expect to have trouble sleeping because I was in P A I N. I know TN gets worse when one is stressed. I guess since I wasn’t panicking, my stress decided to manifest in a different way.

I didn’t crawl into bed until nearly 1 am and I was pretty much just lying there trying to find a comfortable pain-free position. When my alarm went off at 4:30, I ignored it and stayed in bed some more. I knew it wouldn’t take me too long to get ready and I just wanted to relax a bit before the mad rush to the hospital began. Additionally, I needed to pack a bag for the hospital and I had no clue what to pack. I had asked my support group for suggestions but I was still a bit clueless. I know I wouldn’t need anything immediately but I didn’t want my mother to have to go through my things to pack items for me.

Apparently, I relaxed too much and suddenly we were late. I got up and hurriedly went to take my antiseptic shower and pack a bag while my mother got ready. I shamefully admit that I got a bit snippy with my mother. Sigh. She tends to twist and turn and not get stuff done when she is getting ready to go somewhere. We were late. It was not the morning to be twisting and turning and and and I am a bad daughter.

We were taking two cars to the hospital, we loaded up 4 in my car and 2 in the other car and set off. On the way, I completed my living will. Yeah, yeah, I should have done that before. But look, I was busy. And frankly, those questions are not the easiest questions to answer. No, seriously, think about it. Think about it really carefully. How long would you want to be kept on life support for? If there was no possibility of you waking up for several years, how long would you want to be kept alive? Easy for you to answer? Anyway, I got it done and cleaned the nail polish off my toenails – nail polish is a no no during surgery.

On the way, I had some of the worst TN pain ever. I closed my eyes and was thankful that it was dark so that the others did not see me in pain. At that point, if I had not already scheduled surgery, I am pretty sure I would have gotten sufficiently fed up and immediately scheduled it.

We made it to the hospital just after 6am, valet parked and then marched in to be registered. It still had not hit me what I was about to do. I don’t know when it ever will. We sat in the waiting area with all the other patients there for surgery waiting to be called.

At about 6:30, Roberto from patient hospitality called me over. I had spoken to Roberto the night before. He called to tell me he would be handling my case and that we should valet park when I got to the hospitality – it was complimentary (woot! Woot!) He took us to show us patient hospitality and the waiting room. We had a private waiting room complete with comfortable couches, a flat screen television and no DVD player (that little tidbit was a running joke in the waiting room while they waited for me to get out.) We were also shown where they would have breakfast and coffee and the bathrooms (one looking very spa-like, according to Robert). I must say that the accommodations were fantastic.

Robert then told us that my surgery was scheduled for 1pm. WHOOOOOOOOOA. It is now 7am, Robby. What am I going to do until 1pm? Surely, I might starve (no food before surgery). Additionally, one of the doctors had called me the night before to say that my surgery was moved to the first one in the morning. Did that change? We all looked a bit disappointed. Surely, that wait would send anxiety levels through the roof. Roberto went away then returned shortly thereafter to say that he was mistaken. My surgery had been moved up to the first of the day and it was time to take me upstairs. Only one person could come upstairs with me. My mother would come, of course. I waved goodbye to everybody and headed upstairs.

Let the games begin!

Days before ..

The weekend before surgery was one of the most hectic and fun weekends of my life. Friday night I went out with Michael and we partied hard. Saturday PT2 and Rice flew in. We had dinner with Mr and Mrs A and then I went out and partied some more with a group from school. Sunday I went to church then Rice came over and made the best dinner ever – chicken (dusted with smoked paprika, cooked in bacon fat, with apricots and dates), calamari and orzo. Yummerific.

Sunday night I think I relaxed a bit and got a few chores out the way – not enough though. Monday I had an anesthesia clearance appointment. I was extremely worried about this. I had people flying in to see me and everyone praying and pulling for me. What if they found something in my blood work that could prevent surgery? What if? What if?

At the appointment they went over a living will with me – S C A R Y S T U F F and then drew some blood for blood typing and cross matching. I also had to give a urine sample so they could do another pregnancy test. I had done one at my pre-op appointment on April 5 but they needed results that were within 10 days of the surgery.

After that, I went to lunch with Natalie and PT2 then took a nap before heading to the airport to pick up my mother. We left the airport and headed straight to the mall – my mother is a shopaholic. After the mall, we came home and had dinner and tried to relax.

Tuesday, the plan was to head to campus, get some stuff done there then head to the pharmacy and grocery store. Laundry was on the to-do list but it never got done. Tuesday night Natalie came over and cooked curry chicken, stew chicken, turkey, rice and mashed potatoes. My plan was to cook a lot of food and freeze it. I didn’t want my mother to have to worry about cooking while I was in the hospital. Additionally, if I needed a lot of care when I got out, making meals would be one less thing for her to worry about.

After dinner, MH came to visit. MH has a name from my old blog. I need to look through my archives and retrieve it. I cant think of anything that it could be right now. He almost cried and almost made me cry. It was a touching visit. Later, Michael called and said he was outside. That was a surprise. I didn’t expect him to come over. Now, here is a sidenote. Now this shouldn’t be a sidenote but alas I am in rambling mode so it is. At my anesthesia clearance appointment, I was given an antiseptic (2% chlorexidine gluconate) to shower with on the night before and on the morning of surgery. There were strict instructions that it shouldn’t touch my face, hair or genitals. That made me a bit curious. It is brain surgery, after all; you would think they would give me something to wash my hair with also. I remember reading someone else’s blog where he mentioned having to wash his hair with the antiseptic.

My mother, Natalie, PT2 and I had a big laugh about this antiseptic. I needed to be at the hospital by 6am. That meant leaving home by 5:30 which meant waking up by 4:30/5:00. I wasn’t going to go to bed before midnight so that meant showering around 11:30pm and then waking up at 4:30 and taking a second shower with the antiseptic. I love taking showers but seriously, who the hell wants to shower at 11pm, jump in bed and then shower 5 hours later? Nobody apparently, because they all refused to stand in solidarity and do the multiple showers with me. Anyway, that was side note because I was in the middle of my shower when Michael sent the text to say he was outside.

Of scheduling and waiting and rambling

April 21, 2010 – D Day

The weeks leading up to D-Day were interesting to say the least. I didn’t know exactly how to feel. The day I scheduled the appointment I had a mini panic attack and wanted to throw up. Well, that isn’t quite true. That was the day I tried to schedule the appointment. It took me days (weeks, months) to build up the courage to make the call and when I did, the scheduler was not in office. I just about died. Would I have to go through the emotional upheaval and psyching myself up all over again to make this call? It turns out that I didn’t have to. A helpful nurse took my information and told me that she would have the scheduler call me the next day. That meant I got to sit all day the next day. And wait.

When she did call, I took a deep breath, answered the phone and scheduled surgery for just about a month away. I then posted it on facebook – because you know, it isn’t real until you have posted it on facebook. That was March 17.

Everything happens for a reason

Do you believe in that saying? I do. Some days it is a difficult concept to accept but other times, you just know that it is true. I could think of several fallacies in that argument but let’s leave that alone.

On March 6, I ran into an old acquaintance - someone from my past life whom, due to ‘circumstances,’ I never got to know very well. There has always been some regret there but nothing I ever fully focused on. The day after I scheduled surgery, he sent me a message and we hung out together for a bit. While together, my mother called to confirm her flight to be with me for surgery so I mentioned it to him. It is a weird thing to randomly bring up in a conversation with someone you haven’t spoken to in years and also were never really friends with. OK. I am getting long winded and rambly (new word?) Suffice to say that this old acquaintance kept me sane for the weeks leading up to surgery. Everything happens for a reason. Maybe if we had become friends back then, he wouldn’t be in my life now. Maybe. Maybe not. However, I do know that running into him when I did was for this reason – to keep me from losing my mind.

I am blessed with wonderful friends – no matter what I sometimes say, and no matter how lonely I often feel. I am blessed. A friend from high school immediately scheduled a flight to come for surgery, Vance (wow…can’t believe I remember his journalspace nickname) and Rice also did the same. B L E S S E D.

Of scheduling and waiting and rambling

April 21, 2010 – D Day

The weeks leading up to D-Day were interesting to say the least. I didn’t know exactly how to feel. The day I scheduled the appointment I had a mini panic attack and wanted to throw up. Well, that isn’t quite true. That was the day I tried to schedule the appointment. It took me days (weeks, months) to build up the courage to make the call and when I did, the scheduler was not in office. I just about died. Would I have to go through the emotional upheaval and psyching myself up all over again to make this call? It turns out that I didn’t have to. A helpful nurse took my information and told me that she would have the scheduler call me the next day. That meant I got to sit all day the next day. And wait.

When she did call, I took a deep breath, answered the phone and scheduled surgery for just about a month away. I then posted it on facebook – because you know, it isn’t real until you have posted it on facebook. That was March 17.

Everything happens for a reason

Do you believe in that saying? I do. Some days it is a difficult concept to accept but other times, you just know that it is true. I could think of several fallacies in that argument but let’s leave that alone.

On March 6, I ran into an old acquaintance - someone from my past life whom, due to ‘circumstances,’ I never got to know very well. There has always been some regret there but nothing I ever fully focused on. The day after I scheduled surgery, he sent me a message and we hung out together for a bit. While together, my mother called to confirm her flight to be with me for surgery so I mentioned it to him. It is a weird thing to randomly bring up in a conversation with someone you haven’t spoken to in years and also were never really friends with. OK. I am getting long winded and rambly (new word?) Suffice to say that this old acquaintance kept me sane for the weeks leading up to surgery. Everything happens for a reason. Maybe if we had become friends back then, he wouldn’t be in my life now. Maybe. Maybe not. However, I do know that running into him when I did was for this reason – to keep me from losing my mind.

I am blessed with wonderful friends – no matter what I sometimes say, and no matter how lonely I often feel. I am blessed. A friend from high school immediately scheduled a flight to come for surgery, Vance (wow…can’t believe I remember his journalspace nickname) and Rice also did the same. B L E S S E D.

Remind me to write this later

This is a placeholder post of sorts

Things to write on
1. 2nd MRI in July
2. Visit to neuro in October
3. Decisions decisons.