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.