The entries stopped after February 9, except for February 12 and 13th, which you can read here (February 12) and here (February 13), so I will just tell y’all what I vaguely remember, and when I actually started forming “real” memories that are concrete to me.
I remember:
- Bits and pieces of my ICU stay from the first 9 days. What I do remember is very fuzzy to me, though and doesn’t seem like reality. It seems like a dream or someone else’s life. I remember posting a status on Facebook on (I believe) February 10, and I got really upset because I’m a perfectionist and I couldn’t say what I wanted to say the way I wanted to say it. I think I posted the same status twice haha. I know I talked on the phone to my grandma (who is an incredible woman and support for me) because I posted a status about how she told me I’m “love personified,” and it made me cry. I know I did these things, but the memories don’t seem real at all. I remember very hazily seeing one of my good friends, his mom, and friend at my bedside, but it doesn’t seem real. I thought I was dreaming. However, sometime during the ICU portion of my stay, I kept asking about “the book Matthew brought me” because I knew he brought me a book and I remember him talking to me. It just seems like a dream. He’s such a good guy and friend. Matthew, if you’re reading this, I love you so much and thank you!!!
- The horrible sleep-wake cycle. I know, I know, the doctors have to do this to check for your neurological status, I get it. However, when you feel like you’ve been run over by a Mack truck (or ten), all you want to do is sleep. Nobody (in the situation I was in/as a patient) cares about the year, president, time on the clock, if you can squeeze with each hand, move your legs, and whether or not your pupils respond to the light in that (way too bright) flashlight. It was SO annoying to be woken up every hour on the hour, you never got adequate rest and that just contributed to how crappy you felt. It took me a good 6 months after coming home before I was able to sleep like a “normal” person again. It’s exhausting and now when I wake up in the middle of the night, it just brings all that frustration back to me because I’m so tired and it reminds me of ICU and I don’t want to think about that. I know it has to be done, but trust me, it is not fun when you feel like a brain injured patient feels.
- Memories are a little more clear after the 10th and I know I posted more statuses and tried to catch up with everything on my Facebook. It was flooded with support, statuses, messages, pictures, anything you could ever dream that people would say about you when something like that happens. I had to scroll, scroll some more, and scroll some more just to see where it all began. Sometimes I still go back in my timeline just to see it all again. It’s like a dream to me (well, kind of like a nightmare if you choose to see it that way haha) and I am still overwhelmed at how much people reached out to me and to my family. Thank you all, so much!!! It means more than I can even write or say to you. Thank you.
- My speech therapist because she challenged me. I remember acing the tests she had to give me, so she came back the next day with a harder test and was very impressed at how well I did, considering the extent of my injury and how soon after surgery I was assessed. So, kids, pay attention in school!!! You don’t know when you might need to use something. I think beginning to read at a very early age (3 haha) and taking advanced English classes/challenging myself in school paid off. She also did my swallow studies and I remember having to put powder in my drinks to thicken them because I wasn’t able to swallow properly, yet. I drank a lot of thick apple juice. It was kind of like a watered down slushy. :)
- Getting sassy with this guy right here:
Well, well, well… Just how did my family know that I was slowly getting back to me and not this drug filled, fall over at any moment young lady because of a combination of brain trauma exhausting me and copious amounts of heavy drugs running through my veins? Because, this guy pushed me to order food one morning (once my swallow studies were all good and I could eat solids again) and I told him I wasn’t hungry and just wanted to sleep. He had already taken my NG (nasogastric) tube out and told me that if I didn’t order food he’d “have to put the NG tube back in.” I snappily told him “No, you’re really not.” He said “I will if you don’t eat, you have to eat.” I said “Fine! Whatever! Just order me some pancakes or something!!!” I was soooooo irritated with him hahahahah. I laugh about it now, and we laughed about it the day we got to take this picture together, but that’s me. If I don’t want to do something, don’t try to force me to do it because I will meet you with resistance. I am stubborn and I was also tired, confused, and wondering what was really going on. Memories were more clear at this point, but I was still under a lot of drugs (seriously, how many different meds can you put into someone in a 24 hour period?! It’s appalling!! When I look at the list of daily medications I took in my 10 ICU days, I’m just shocked) and probably very irritable from a lack of understanding.
Anyway, he is an incredible nurse, and one I distinctly remember. He told my survivor friend (who was his co-worker and the one who had the same rupture/surgery/neurosurgeon as me) there’s no way I remembered him. I had to go back to ICU in December during my last follow up just to see him!!! It was so awesome. :) I loved that day, and I wrote about it here if you want to read about it. :) That fiery side of my spirit coming out was a sure sign to my family that I was going to be okay, that I was still me, even if I was buried under heavy drugs and trauma.
- Having severe neck and back pain and literally crying because of it. I didn’t cry because of the 33 staples in my head or the incision, but I remember one day in particular where my neck and back hurt so badly, that I Just broke down crying.
It was probably a combination of feelings that hit and overwhelmed me at once, but I was just over it this day. The right side of my brain was mostly affected, it’s the emotional side of the brain. To say that I felt (and still do feel, always did feel even pre-rupture) emotions very deeply is an understatement. I am a very sensitive, but not very emotionally expressive person. For me to just break down into tears like that kind of freaked me out, not gonna lie. Another awesome nurse, Gil (who I really wish I could find somehow to thank him for being so awesome!!) tried comforting me by rubbing my neck and my back while I just cried. It was sad in a way. :( He was awesome, though, and I do remember him (and Kim) too!!! I even remember a conversation with him about Twisted Root hahaha. Don’t ask, my memories are weird.
- My transcranial doppler and the tech, Sarah, who did it for me. It was either really late at night or really early in the morning, because it was pitch black outside. My neck and head had been hurting so badly, that I told her “I love it when you do this because it feels like a massage.” She was very kind and patient with me.
- Nimodipine (Nimotop)!!! Giant, horse pills that I had to take everyday to prevent vasospasms. Vasospams can occur after SAH (subarachnoid hemorrhage–bleeding into the space around the brain and skull) and further complicate your life. Vasospasm is a sudden constriction of a vessel which reduces blood flow. Definitely not good!!!
- PICC line in my left arm. I had to sleep with my arms behind my head rather often, like this, to keep from sleeping on my side.
Abdul told me “Robin, don’t sleep on your left side or else you could pull out that PICC line and you could bleed to death.” Well, that’s reassuring!!! Hahah. Needless to say, I did NOT sleep on my left side. All of those machines, wires, lines. Get off of me! It was so annoying sometimes. Abdul is also the one who pushed me to go on walks around ICU once I was no longer a fall risk (yellow gown=fall risk) and I did not ever want to go. I just don’t think anyone understands the level of exhaustion. It is SO exhausting to have to do anything when your brain is traumatized like that. It’s shocked and your body just follows suit. Once he finally got me to get over my stubborn ways, I agreed to a walk. However, I did not want to drag the pole around with me that had me hooked up to an IV. Hahaha. Always trying to do my own thing. I ended up taking the pole with me.
- Falling asleep mid-sentence while talking with my older brother. Hahahaha. Literally just fell over to sleep, in my bed, right in the middle of my sentence. Give me a break, a nurse had just given me Dilaudid (STRONG pain medicine–and I’m rather petite anyway) through my PICC line so it went straight to my system. I remember talking to him and then nothing. The next day he woke me up and said “Sis you were just talking to me and you just stopped talking and went straight to sleep. Whatever they give you, that stuff is strong.” We were laughing so much about that. It’s still funny to me!
- February 13, Michael (Matthew’s brother) came to see me and my family. He brought AMAZING barbecue (hey, I’m a Texan and my food restrictions were lifted) to ICU for all of us, and this my first “real” memory. I can’t tell you the specific dates that all of the above happened (except for what’s in my timeline on Facebook where I posted about it) but I can tell you about this day (and every day after) just like it was yesterday. I don’t know what made my mind start registering memories after this, but I’m glad my “first real memory” is something pleasant. Michael was on my left side, my older brother was in Texas from Ohio (and he had been, I just didn’t really remember or know it) and was on my right side. My mom was in the room, and I just remember a basketball game being on TV. I remember eating the best food ever and asking permission to drink a Dr Pepper. Hey, that’s a true Texan for ya!! It was the best food and such a good time. It may have been cold outside (I know it snowed the day before), but I felt really warm inside my heart. So grateful for you, Michael, and I will seriously never forget what you did for me. Thank you, I love you!
- February 14, I was woken up right around 6 AM by “some kid” who is actually a resident doctor (he looks really youthful, seriously) and he removed my staples. I asked him if it was going to hurt and he told me no. I told him “okay, well you can do it, but if it hurts I’m not going to be happy with you.” Hahaha. Who do I think I am? He took them out very quickly (didn’t hurt, just stung) and I asked him “Did you get them all? Are you sure?” because by this time (8 days post operation) my hair had already started growing back in and the stitches were the same color as my hair (and probably about the same length too) so I just wanted to make sure he didn’t miss any. He reassured me that he got them all and I was content with that. :) One of my best friends and someone I consider a sister to me came to see me. She brought me a book I had been looking for (but couldn’t find) right before any of this ever transpired, and a stuffed dog that I still sleep with today. :) Megan is an incredible friend and extremely loyal. That girl was by my side nearly every single day except two, I think, of the 12 that I was admitted into the hospital. Mind y’all that the distance between where Megan lives, the campus of TCU in Fort Worth, and the hospital in Dallas isn’t exactly a cakewalk. DFW is jam packed with people and traffic, everyday! I remember conversing with her, laughing about her stories, and being encouraged by her. Megan, thank you so much for everything, and I love you dearly!!!
- February 15, I was finally moved upstairs and out of ICU. I was still in the hospital, but had more independence and I was able to have all of the flowers that people had sent to me or brought to me. Megan had them all at her house for me and brought them back up to the hospital for me. :) Thank you, love!! I had another “moment” where I became very emotional about not being able to take a shower. I’m extremely independent, and all I wanted was to take a shower. In ICU they had told me once I moved upstairs, I could take a shower since my staples/stitches were out. I would just have to be careful and could only wash my hair with baby shampoo. Once I got upstairs, I was so ready for that shower (my muscles were tense, I was sore, I was tired, I was feeling disgusting and dirty because I hadn’t taken a shower/bath since the night my aneurysm ruptured–which was on February 4th!!!) that when the nurse told me she’d have to get approval from the doctor the next morning, I started bawling. Don’t take my hope from me. :( I know it wasn’t her fault at all, but I was just extremely upset. Remember, I was still trying to understand what happened, what would happen, the emotional side of my brain was affected, and I was still on a ton of drugs. I think breakdowns might be normal. I’m just surprised I would cry like that over something so “simple” as a shower. But experiences like this will teach you that the simple things are what matter most. If a girl wants to take a shower, let her take a shower!! Haha. I eventually got over myself, got in the bed, put the “massager things” on my legs, and just decided to do some more research and chat with friends. This is the first night I stayed alone (without a family member with me) and I remember watching a movie. Parts of it, anyway. I fell asleep!!
- February 16– I had the most glorious, wonderful, cleansing, perfect shower of my life. Ever!!! Finally! My mom had to help me, and stay with me just to be sure everything was okay. She helped me wash my hair and incision and I was just glad to finally take a shower. Bed baths are alright, but they don’t compare to an actual bath or shower. This was my first time being submerged in water since February 4, and it was glorious. :) I remember being exhausted, yes… Overwhelmingly tired after a 15 minute shower, I got dressed and slept for the rest of the afternoon. The energy that these brain traumas drain out of you is unreal, for real. It’s inexplicable, but it’s like trying to run on a battery that is consistently low. That’s the only way I can think to describe it, and I really hope you don’t ever have to experience it.I remember having an awesome nurse and respiratory tech, too. The nurse reminded me of an old co-worker from the days when I worked in the E.R. as a patient representative. The respiratory tech had a very unique name and I won’t forget him, either. They took excellent care of me and they were amusing. It was nice to have them there if I needed them (had to do breathing treatments, both because I’m an asthmatic and because I had been intubated and had a ventilator breathing for me in those earlier days!) but to also have my own independence. Hahaha, this is the same night that the nurse set my bed alarm and I set it off!!! It was in the middle of the night and I had to use the restroom. I forgot that she told me she she the bed alarm and for me to call her if I needed anything. I took my “massager things” off, and went to put one foot on the floor. Next thing I know, there is all of this commotion going on because I set off my alarm! I called the nurses station and explained to them what had happened, and someone came to turn it off and sit in my room to make sure I could get to the restroom and back safely. They just have to watch you to make sure you’re stable enough. I was okay, and I told her I would be okay by myself, but I understand the necessary precautions. I think I watched a movie on this night. I was also alone for the second night, and it was nice to just be by myself. I am an introvert, after all. :)
- February 17- Finally!!! After 12 long days in the hospital, away from home and any sense of normality (which I still haven’t recovered, by the way), I am going hooooome!!!! I woke up alone and soon got in touch with my mom to let her know that I was going to have discharge orders brought up to me soon. A doctor and a nurse came in to talk with me and see if I had any questions, and I felt secure because they were attentive and explained things to me in a way I could comprehend. I ate breakfast, and got into some comfy clothes for the ride home. My last nurse removed my PICC line and I had the funniest reaction to it! I said “Oh my gosh!! I didn’t know it was a hole!!! Is this thing going to close up?!” She reassured me that it would, and I could remove the bandage/shower the next day. It did close up, I just have a small scar where it was. Reminds me to keep pushing when I see it. :) She explained my discharge instructions to me and was very clear on the Acetaminophen (Tylenol) products, only. No NSAIDs (Ibuprofen-Motrin, Naproxen-Aleve, Aspirin, etc.) Do not exceed 3,000 MG in a 24 hour period so you won’t damage your liver. I still stick to that today. I rarely ever take any NSAIDs even though it’s been OK’d now, and I’m still very strict about how much Tylenol I take. Not trying to cause anymore damage to my body.
I feel like I should apologize to my liver and kidneys anyway, for all the hard work I put them through last year with so much medicine in those 12 days. Haha. I treat them well, though! Minimum medication, I just tough it out or find a way to ease my mind with relaxation techniques. Only medicate if I have to do so. My hair had grown back in some, but it was still long in the back and my incision was still swollen. They rolled the wheelchair up to get me, I insisted on walking, they won that battle, and I finally got to go outside and see daylight outside for the first time since I came home the evening of February 4, 2012. The car ride home was surreal. It felt like I was in another world, even though it was the real world. I felt a little dizzy/disoriented and tired, but it was great to see the city again and not be in between 4 walls.
What a journey. That’s my story, and it’s only the beginning of this journey. It has been 19 months today since the day I was admitted to the hospital, and it still seems like a dream or that I was living someone else’s life instead of my own. 12 days in a hospital, a lot of love, a lot of faith, a lot of fight. Incredible neurosurgeon(s), amazing nurses and skilled therapists/techs.
My amazing God used every single one of those people as instruments to assist in saving my life, but I still firmly believe that if it had been my time to go Home, nothing any of them could have done would have been enough to save me. My God is an awesome God and I am forever grateful for all of the blessings He has provided to me.
My journey has not been easy, but I have a bright outlook on life and I know for certain now that life is way too short to spend in perpetual misery. I refuse to do so, but it’s a choice I have to make every. single. day.
That’s all for now, I’ll start getting into other issues “for us” in my next post!! Just wanted to finish up my own journey, first. All of the entries that were recorded in my journal are on the site and you can read them here: February 14, February 15, February 16, and February 17. :) You’re welcome to read those if you’d like. I’m an introvert (I know it doesn’t seem that way) but I am willing and able to speak about my own journey, and I believe it makes a difference. I think it’s part of what I should do with this journey, and even though I might not talk much in person, I don’t mind writing about it. It helps me and I am constantly receiving feedback of how it has helped others. That gives me purpose to the pain.
Keep the faith, keep the fight!!
Goodnight, world!
Faith, by fire. 