I still did not know whether I was going in for my EMU (Epilepsy Monitoring Unit) admission as of March 27. I was told by my doctor (on February 28) that I would be checking in March 31, but no one I could reach on the phone knew anything about it. They all told me the next opening was in July. Someone was supposed to call me weeks before to confirm, but no one ever did, so I assumed I'd been lost in the system and lost my place in the (very long waiting) line.
On Monday, March 27, they called to confirm that I was, indeed, checking in on Friday, March 31, and I was shocked. My sister had bought a ticket for that weekend a few weeks prior, with a 50/50 chance that we'd be spending her stay at the hospital vs. at our house doing fun house projects (or a combination of both).
Friday, March 31 - I checked in around 2pm with my sister. I saw my doctor right away as they were hooking me up to the EEG monitoring wires (with what smelled like rubber cement, in my hair). He told me they would be doing strobe lights and hyperventilating that night once I got sleepy, but otherwise, I had the night 'off' to settle in and start more involved testing the next day.
The goal of my stay was to trigger a seizure and/or irregular brain activity that could show where/why I had my episode on February 4. He said that even if I didn't have a full-on event, he would be able to see ripples that would give him more information than what can be captured in a traditional 1-hour EEG.
I was hooked up to the electrodes on my head as well as heart monitors on my chest and stomach, and I had a very long power cord that I was attached to. I had a small fanny pack with my monitors (EEG and heart) in it, and I had to carry it to/from the bathroom whenever I needed to go. AND I had a bed alarm, since I was a fall risk and potentially epileptic, so every time I needed to pee, I had to call a nurse to turn off the alarm, help me out of bed, and be in the room while I went to the bathroom. Every time for 6 days.
Saturday, April 1 - I woke up from a HORRIBLE night of uncomfortable, interrupted sleep. I forgot about the whole checking-your-blood-pressure-and-temperature every 3-4 hours thing, and it was awful. I had all of the EEG wires glued to my head, so I was afraid to sleep on my side, and unable to really get comfortable on my back (I'm a stomach sleeper, typically). They had to come in and reglue a few of the wires in the night, as well, and it was just rough. I woke up for the day at 5:30am, thinking I could take a nap later, but I was told that we would be doing sleep deprivation that night and that NO NAPS were allowed that day. I was to stay up until 2 or 3am. Phew! That was a long day. I think I had coffee every 4 hours until about 10pm. Kate came to visit that morning and stayed until the afternoon.
My sister came over in the afternoon and stayed up with me the rest of the day, watching both games of the Final Four and starting Unbreakable Kimmy Schmidt, until about 1:30am. What a trooper--she did have the Boise time change working in her favor, but still. I was so impressed she lasted that late--I would not have made it without her. She headed home, and I was tested with strobe lights and hyperventilating again from 2:15-2:30am. I had a pretty good chunk of 4-5 hours of uninterrupted sleep that night.
Sunday, April 2 - I woke up feeling more refreshed than the morning before. I was told we'd be trying a medicine to relax me (and, thereby lower my seizure threshold) that day. It was called Seroquel, and it hit me very hard as I was trying to visit with my sister and my friend, Stacey. Around 10:30am, my eyes got very heavy, and I napped until lunch, ate, then napped a few more hours. They gave me another one in the evening, and it knocked me out, as well.
I think this is the day my doctor told me I would be staying until Wednesday. It was either Sunday or Monday.
(Up until this point, I really thought I'd be going home on Sunday or Monday. I thought I'd be a quick case and that I'd get to spend the last few days of my sister's visit at home with her, doing fun things.)
Monday, April 3 - On this morning, my doctor came in with a paper prescription sheet, and he wrote out directions for me to drink a maximum of 2 glasses of wine that evening. He also offered to walk next door to Costco to get some, but I insisted that my sister could bring some from my house. She did, packing it on ice in Lewis's cooler bag, and she and I partook in some wine while watching the NCAA championship game between North Carolina and Gonzaga.
My doctor wanted to order a 24-hour Holter monitor test to check my heart (just to check all of the beats of my heart for 24 hours), so a cardiology tech came down to add that to my repertoire of wires. They kept it on until Tuesday, and it was reported to me on Wednesday that everything was normal.
Otherwise, Monday was a pretty uneventful day. More Kimmy Schmidt and magazines and coloring books and logic puzzles and Sudoku.
Tuesday, April 4 - On this morning, my doctor asked how I was doing (as in, mentally). I told him I was ok (aka that I wasn't dying to go home, that I was ok with staying), so he said he would like to keep me until Friday (which was the maximum allowed). Still nothing had shown up on my EEG, and he wanted to run a few more tests to make sure that we weren't missing anything. He said that I could leave on Wednesday, but that would leave unanswered questions that would require me coming back in and starting anew in 6 months. If I was ok staying, he wanted to just push through and see if we could get anything to show up. His determination to get to the bottom of it made me determined to get to the bottom of it, so I made arrangements to stay until Friday (my mom extended her stay, while my dad decided to head back home). I think my doctors words were that he needed to look for the zebra instead of the horse.
My sister left midday to fly back to Boise--it was so great to have her there with me.
I also had leg pain that morning under my fashionable and functional compression stockings. My doctor ordered an ultrasound, and the tech found that I had two superficial blood clots on my right leg (one on my inner knee, one on my calf where my varicose vein sticks out). Due to that, I had to take a dose of blood thinner on Tuesday afternoon and again on Wednesday.
I had back to back visitors that evening--my parents with Lewis and Lenore, then Kate, then Kevin, then my friend Stacey. She arrived at 10 and stayed with me until 2:30am!!! She brought me fresh magazines and Scrabble, so we spent the night talking and playing Scrabble and being delirious together. Then she got to witness another round of strobe light and hyperventilating tests from around 2-2:15am. They let me sleep from 2:30ish until 7:40 the next morning, so a solid 5 hours (with no blood pressure or temperature checks) that night!
Wednesday, April 5 - On this morning, my nurse gave me my seizure medicine first thing in the morning, which was strange. I'd stopped it upon my admission, so I got really nervous and wondered if they'd found something the night before. Instead, they'd found nothing (again), and my doctor decided he was sending me home the next day. He said that my brain waves were beautiful and that he felt sure that it had to be something other than abnormal electrical brain activity that caused me to fall and go blue and shake. He mentioned neurocardiogenic syncope (which is a type of fainting associated with low blood pressure, not enough blood getting from the head to the heart i.e. if the blood rushes to your head, etc.). He'd mentioned that term a few days before, as well, when Emily was still there because I remember that she and I googled it. Vasovagal syncope was another possibility he mentioned.
The Holter monitor results were normal, but my doctor ordered an echo to look closely at my heart and make sure all was well within there. The echo had just started when my friend Kate's mom, Lynne, arrived to visit, so she got to watch the whole thing. They did the echo first, then injected me with 3-4 rounds of 'agitated saline' (saline that was stirred/shaken/etc. to make it bubbly) and one round of a dye. I heard them using terms that sounded familiar from Lenore's cardiology appointments, so that made things a little less scary. The echo report came back the next day, and all looked good.
Thursday, April 6 - I woke up to my doctor asking what time my mom was coming to pick me up. (Yay!) I called to get her and the kids heading that way, and I was unhooked from the wires, officially discharged, and on my way home within an hour. My doctor told me I either set the record or tied the record for the longest stay in the EMU (6 nights). He made me tear up as he complimented my 'constitution' and told me that I was a trooper throughout my stay. He said that I have very beautiful and very boring brain waves, which is a good thing. He said that I should take comfort in knowing that, whatever happened, it wasn't due to epileptic activity. We still don't know what it was, but he is ruling out epilepsy.
I am being referred to a cardiologist to see if they can determine what the cause might be, and I am following up with my neurologist after the cardiologist, as well. I'm supposed to keep taking my seizure medicine (just because we don't know what it is yet) and I'm still not supposed to drive until my 90 days is up (May 5).
Wrap Up
Throughout my stay, my sister was with me as much as she possibly could be. It was such a treat to have her here. She helped at the house with the kids some and went for runs, but otherwise she was by my side. Most everyone that entered the room asked if we were twins, and everyone asked about her once she flew out Tuesday. We will get to see her and my brother-in-law, niece, and nephew in June when they come to visit for a few weeks.
I am SO thankful for Kevin and for my parents for hanging out with the kids, bringing them to visit, and for keeping them fed and happy while I was away. I know that they are a handful, and I'm so thankful that I was able to leave them and not worry. Lewis was on spring break, so my parents were able to take him and Lenore to the science center one day and the zoo another day.
I'm thankful for my friends who texted and called to see how I was doing. For my friend who dropped off candy and coloring supplies the day I was heading in. Every little thing helped pass the time.
I'm thankful for coffee. Never has it ever tasted so good. I did get a little more comfortable each night with my sleep positioning, so I was able to sleep better as the time went on, but I'm really tired and feeling like I still need to catch up on sleep. It feels amazing to be back home in my own bed.
I'm thankful for the never-ending power of baby wipes. My sister had suggested I bring some, and I'm so glad I did. I turned down the offer of a bath from the nurse/nurse aide, and I opted to give myself a baby wipe bath every couple of days. My hair was a hot mess and started to smell after day 3 or 4, but there was nothing I could do about that. The electrodes had to stay glued on the whole time, so a shower was out of the question. I didn't have to wear a hospital gown, which made things more comfortable. I wore my own comfy pants and shirts with a wide scoop neck, and I had Kevin wash them and bring them back as needed.
I think I still have four episodes of Unbreakable Kimmy Schmidt to watch, and then I will be all caught up. :)
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