Matthew74
Stalwart
- Messages
- 597
- Reaction score
- 26
- Points
- 93
The Room:
I was scheduled to go in at 7:45 AM at the Mary Brigh building on St. Mary's campus. You check in at the desk and someone will come and get you. The room was very comfortable. There were two large chair/sleepers for visitors, a nice TV, a bathroom, and a separate sink area. There wasn't really anywhere to hang your cloths, except maybe for a coat or something. There were some shelves. You could turn the temperature up and down with the nurses call button at your bed. Just like you would expect from the Mayo, they had an interesting closet that opened both inside the room and out, where they put towels and other supplies, dirty meal trays, and dirty laundry. The staff could put stuff there or pick it up without disturbing the patient. There was a room service menu, and you had to call and order what you wanted. Meals came in about 45 minutes. Food was not great, very bland. The best things were the salads. Like any hospital room it looks like Manhattan at night, only more lights. Ask them to turn off everything they can, and cover what they can't. [When I had my back surgery the operating room looked like JJ Abrams' bridge of the Starship Enterprise, no joke.] Tell them to shut the door if you want it closed. They may want it unlatched or open a bit if they expect to rush in, but they're pretty good about it. The room was right next to the nurses station and EEG lab. When I pressed the button someone actually came in the room to ask what I wanted. [At other hospitals, I have had them answer by the intercom.]
The room had a lift or "sling", like those for people with severe mobility problems. It went from one end of the room to the other and into the bathroom. It was a belt that was attached to a track in the ceiling. You could raise and lower the belt with an attached remote. You weren't allowed up unless someone was there, and you had to wear the sling so that you didn't fall (with a seizure). It was hard at first, but I got the hang of it. It was fairly easy for me to use the bathroom, and exercise with it on, but not convenient. The camera in the room was movable, so that if you were in a different place they could follow you around (if you were exercising, or just on the side of the bed). They were pretty attentive. The sheets were light green, apparently this helped with infra-red picture when the lights were out.
The bed had four "sideboards" (like all hospital beds) with padding. They kept the top two up all the time, but only put the bottom ones up when I was not doing so well, and they were polite about it. There was a belt that you could wear and still turn in bed, that was supposed to keep you from running off if you didn't know what you were doing (like in a complex partial, or when you were postical). I told them I didn't need it.
You have an IV in your arm. I told them to put it on my left, because I seize and sleep on my right. They move it every few days.
Electrodes:
When I got in the room the first thing they did was put the electrodes on. They pulled the wires back where they were bundled into a soft fabric "tube" that covered them. The tube was pinned to your shirt - I found it worked best pinned at the back of your collar. The tube and wires led to a small fabric bag with a box in it (made like those trendy drawstring bags that you can wear like a backpack, but smaller). I found it best to put the bag at my left side, with the wires over my shoulder with some slack behind me. At night I took the wires off my shoulder so I could turn on either side more easily. Frankly, it wasn't a problem, sometimes I found myself laying on the wires and didn't even notice. You just had to be careful not to pull on it and pull the electrodes off. They asked me if I wanted my head wrapped up. You also have a heart monitor, just one electrode. They asked me if I wanted to have it put on my back, but it was fine on my chest.
* I found it much more comfortable WITHOUT any kind of gauze head wrap. When it was wrapped up I got really itchy.
The box in the bag was where all the wires were connected to what looked like a very long phone line. The phone line plugged into the wall. It was long enough that you could go anywhere inside the room. However, since you were actually plugged into the wall you had to have a button up shirt. [At Beth Israel/Deaconess in Boston the little box was wireless, so you could leave the room, and didn't have to have a button up shirt.] I bought several pairs of pajamas because I figured I would be in bed, I would probably be seizing, and wanted to be comfortable. You could wear a regular button up shirt with comfortable pants if you wanted.
Twice a day the EEG techs came in to check the "impedance" on the electrodes, and do major fixes to the glue. They came in two or three other times a day to replenish the gel in the electrodes, and do minor fixes to the glue. They did a great job. You can ask them to clean up excess glue, which I highly recommend. Tell them if it's uncomfortable. They were happy to fix things to make me more comfortable. I asked them to gather up all the wires tighter at the back to keep them off my ears. They really did a super job.
There are several problems with having electrodes glued on your scalp for a week or more.
1. When they put the gel in the electrodes they intentionally "scratch" your scalp. You start to get sore after a few days.
2. The glue gets itchy. It really helps when an electrode falls off, if you make sure to ask them to clean it up good before putting the next one on.
3. You don't get to wash you head the whole time. Eventually oil and dead skin start to accumulate. The best thing is to ask them to clean up before re-gluing electrodes and to clean in between electrodes occasionally.
The process:
The first day they didn't reduce my meds. I'm not sure why, but I think that the attending doctor was really worried that I would generalize and hurting my back, since I was only 2 months out of surgery. He communicated very well with my epileptologist and spine surgeon. After a couple days they agreed to use the opportunity to get me off of Keppra.
I had a seizure on the third day after starting to withdraw my meds, and one the day after. Both of them I induced with caffeine, staring at the computer, and stationary bicycling. I think they were both drug withdrawal seizures.
They wanted to do a "SPECT" scan. A SPECT scanner is kind of like a PET scanner. For epilepsy diagnosis, they wait until you have a seizure, and inject you immediately with radioactive tracer. The tracer goes to wherever you are using more blood in your brain, which is the seizure focus. Unfortunately, they wanted two good EEG recordings of seizures before doing the SPECT, to make sure I was having the same kind of seizures each time. I didn't have a third like the first two, so the scan wasn't done. I tried real hard. I did have a third seizure, but it was really weird, didn't show up on EEG, and there may have been some other stuff going on, so they didn't inject me.
After about a week and a half I could tell that I wasn't having the sorts of auras that lead to the seizures they wanted. They released me on the 12th day.
My experience:
The first day or two were by far the hardest. I was adjusting to everything, drinking a lot of caffeine, and probably experiencing some withdrawal symptoms. I was jumping out of my skin. Later, when I was off most of my meds, not getting enough sleep, and having a lot of "auras" I felt really tired and sometimes emotional. By the end of the week I was happy just to lounge and stare a lot. Personally, I really didn't mind being cooped up. The worst part of being in bed all the time was that my back ached. Also, when you are sitting and laying around all the time you don't feel good. I was able to keep clean pretty well with a washcloth in the bathroom. Basically, just like everything else at the Mayo, it was awesome. They do everything very well and I feel safe. There were some minor aggravations, but their organization is so professional and well considered. I would really miss not being able to go there.
The staff:
Honestly, everyone was great. I live alone in a strange town, and it was awesome having people be nice to me and take care of me. They checked my vitals, and did a neurological exam a couple times a day. Every three days or so they looked for bed sores. They did laundry for me. When I was in the bathroom they often arranged the room, or fixed my bed. It's really hard for me to ask for help, but I had to get over that, because you're really not supposed to do anything but stay in bed.
Suggestions:
1. Prepare mentally. Being prepared will make things easier. Assume that from the minute you walk in you will not be allowed to stand up, or move from your bed or chair without assistance. It doesn't matter that you were just out hiking alone the day before. It's part of the deal. They are providing you with a service and taking care of you, and it's your job to let them do their job. You may not be allowed out of your room for your entire stay. Rather than seeing these things as limitations, try to think about it as someone taking care of you and making sure you are safe. They know it's a pain for you. They are going to do everything for you, just be sick, or at least act like you are sick.
2. Bring several pairs of comfortable cloths. Tops may need to have buttons. You will have an IV in your arm for rescue meds or tests, and your sleeves shouldn't cover this up. Short sleeves are best, but long sleeves can be rolled up a bit. You can probably wear regular everyday cloths that are comfortable, but I bought pajamas especially for the stay.
3. Guys: Don't get a buzz cut thinking it will make things easier for them. Apparently, the short hair pushes the electrodes off as it grows. Get a buzz cut for your convenience or comfort if you like, but it's not necessarily better for the test. (It IS better for a short outpatient EEG, because it's easier to measure and put the electrodes on.)
4. You may have to have the barriers on all four sides of the bed up, or wear a belt that makes sure you don't run off after a seizure, or use a sling for when you are out of bed. Just accept it. Don't think of the bed as a prison, make it more like an adjustable dominion. Think about how you used to sit on the floor or bed as a kid. I found sitting sideways with the bed all the way up, and my back against the side barrier was most comfortable. The more you move and change position the more comfortable you are. You can stretch by kneeling, "standing up" on your knees with your back straight. I liked to sit on the side of the bed, with my legs hanging down, especially when eating.
5. You will have electrodes all over your head and a heart monitor. You may be plugged into the wall, or have a portable device. You will be on camera while in the room, and there will be a mike so that they can hear you. (They usually aren't listening, but they are watching pretty good.)
6. The electrodes will fall off and will have to be re-glued. You may also have to have the gel/cream in the electrodes "topped up" several times a day. This involves "scratching" your head, and it can get sore after several days. I found the electrodes were infinitely more comfortable without a head wrap.
7. Bring a bag for your stuff that will sit up on it's own on the floor when open, and that can be put at the foot or side of the bed. You can't get up without help, so you want all your stuff accessible.
8. They may set the bed alarm. You will find out.
9. They will probably have some kind of exercise equipment for you to use. The problem is that you can't get too hot or you will sweat and the electrodes will come off. You also don't want to get sweaty because then you need a bath.
10. Be prepared for them to move your IV every three days. (I got poked 5 or 6 times, including the do-overs.)
11. After a week or so they may want to give you Heparin shots to keep you from getting blood clots. I had mine 2x a day in the stomach (but they really weren't bad).
12. They will probably give you generic meds, so you won't know what you are taking. Don't worry about it too much, you are supposed to have seizures anyhow.
13. Being off your meds has psychological effects. You may feel like you are jumping out of your skin, or get depressed, or both.
14. You may, or may not, be able to take a real bath. I went 12 days without one, but I did pretty good with a washcloth and basin.
15. I can never sleep in the hospital. I asked the nurses to turn all the monitors off at night, and even had them cover one that didn't turn off. Ask them to shut the door, or shut it unlatched if they prefer. Ask them to turn off all the lights. They don't think about that stuff.
16. ASK THE NURSES TO DO STUFF FOR YOU. It was really hard for me to do this, it doesn't matter why, but I had to get over it. The point is that for the most part you aren't expected to do anything, and they are expected to do everything. I tried not to press the button unless I really needed something, but whether you have to call, or they are in the room for something else, ask. You are stuck in bed for a week. You can ask for your heart monitor to be changed, or the excess glue on your scalp to be cleaned up, or your bed made, or some laundry done. Don't put up with unnecessary discomfort.
17. Say "Thank you!" Appreciation makes them happy, and they deserve it.
Suggestions of things to bring:
1. Salt, Pepper, and some kind of spices. Hospital food can be really bland.
2. Wet Wipes, or some kind of moistened towel for freshening up.
3. Laptop, Cell phone, movies, etc. Extension cord.
4. Any and all toiletries. You may be in for more than a week.
5. Books
6. Coloring book and crayons or colored pencils (sharpener, eraser, clipboard).
7. Picture of mom, dog, or cat.
8. Teddy Bear.
9. Forearm exercise grips (to offset the teddy bear).
10. Snacks, and lots of them. The nurses should have access to a refrigerator that you can use.
11. Bible and prayer book, icon, devotions.
Things to do:
1. Sit and stare.
2. Watch funny videos on YouTube. (Groucho Marx is awesome on "You Bet Your Life", you also have to watch him on "What's My Line" with the professional wrestler.)
3. Movies.
4. Video games.
5. Crafts.
6. Reading.
7. I found I didn't really get bored.
8. Have the nurses bring you ice cream.
9. Have seizures.
10. Order room service.
I was scheduled to go in at 7:45 AM at the Mary Brigh building on St. Mary's campus. You check in at the desk and someone will come and get you. The room was very comfortable. There were two large chair/sleepers for visitors, a nice TV, a bathroom, and a separate sink area. There wasn't really anywhere to hang your cloths, except maybe for a coat or something. There were some shelves. You could turn the temperature up and down with the nurses call button at your bed. Just like you would expect from the Mayo, they had an interesting closet that opened both inside the room and out, where they put towels and other supplies, dirty meal trays, and dirty laundry. The staff could put stuff there or pick it up without disturbing the patient. There was a room service menu, and you had to call and order what you wanted. Meals came in about 45 minutes. Food was not great, very bland. The best things were the salads. Like any hospital room it looks like Manhattan at night, only more lights. Ask them to turn off everything they can, and cover what they can't. [When I had my back surgery the operating room looked like JJ Abrams' bridge of the Starship Enterprise, no joke.] Tell them to shut the door if you want it closed. They may want it unlatched or open a bit if they expect to rush in, but they're pretty good about it. The room was right next to the nurses station and EEG lab. When I pressed the button someone actually came in the room to ask what I wanted. [At other hospitals, I have had them answer by the intercom.]
The room had a lift or "sling", like those for people with severe mobility problems. It went from one end of the room to the other and into the bathroom. It was a belt that was attached to a track in the ceiling. You could raise and lower the belt with an attached remote. You weren't allowed up unless someone was there, and you had to wear the sling so that you didn't fall (with a seizure). It was hard at first, but I got the hang of it. It was fairly easy for me to use the bathroom, and exercise with it on, but not convenient. The camera in the room was movable, so that if you were in a different place they could follow you around (if you were exercising, or just on the side of the bed). They were pretty attentive. The sheets were light green, apparently this helped with infra-red picture when the lights were out.
The bed had four "sideboards" (like all hospital beds) with padding. They kept the top two up all the time, but only put the bottom ones up when I was not doing so well, and they were polite about it. There was a belt that you could wear and still turn in bed, that was supposed to keep you from running off if you didn't know what you were doing (like in a complex partial, or when you were postical). I told them I didn't need it.
You have an IV in your arm. I told them to put it on my left, because I seize and sleep on my right. They move it every few days.
Electrodes:
When I got in the room the first thing they did was put the electrodes on. They pulled the wires back where they were bundled into a soft fabric "tube" that covered them. The tube was pinned to your shirt - I found it worked best pinned at the back of your collar. The tube and wires led to a small fabric bag with a box in it (made like those trendy drawstring bags that you can wear like a backpack, but smaller). I found it best to put the bag at my left side, with the wires over my shoulder with some slack behind me. At night I took the wires off my shoulder so I could turn on either side more easily. Frankly, it wasn't a problem, sometimes I found myself laying on the wires and didn't even notice. You just had to be careful not to pull on it and pull the electrodes off. They asked me if I wanted my head wrapped up. You also have a heart monitor, just one electrode. They asked me if I wanted to have it put on my back, but it was fine on my chest.
* I found it much more comfortable WITHOUT any kind of gauze head wrap. When it was wrapped up I got really itchy.
The box in the bag was where all the wires were connected to what looked like a very long phone line. The phone line plugged into the wall. It was long enough that you could go anywhere inside the room. However, since you were actually plugged into the wall you had to have a button up shirt. [At Beth Israel/Deaconess in Boston the little box was wireless, so you could leave the room, and didn't have to have a button up shirt.] I bought several pairs of pajamas because I figured I would be in bed, I would probably be seizing, and wanted to be comfortable. You could wear a regular button up shirt with comfortable pants if you wanted.
Twice a day the EEG techs came in to check the "impedance" on the electrodes, and do major fixes to the glue. They came in two or three other times a day to replenish the gel in the electrodes, and do minor fixes to the glue. They did a great job. You can ask them to clean up excess glue, which I highly recommend. Tell them if it's uncomfortable. They were happy to fix things to make me more comfortable. I asked them to gather up all the wires tighter at the back to keep them off my ears. They really did a super job.
There are several problems with having electrodes glued on your scalp for a week or more.
1. When they put the gel in the electrodes they intentionally "scratch" your scalp. You start to get sore after a few days.
2. The glue gets itchy. It really helps when an electrode falls off, if you make sure to ask them to clean it up good before putting the next one on.
3. You don't get to wash you head the whole time. Eventually oil and dead skin start to accumulate. The best thing is to ask them to clean up before re-gluing electrodes and to clean in between electrodes occasionally.
The process:
The first day they didn't reduce my meds. I'm not sure why, but I think that the attending doctor was really worried that I would generalize and hurting my back, since I was only 2 months out of surgery. He communicated very well with my epileptologist and spine surgeon. After a couple days they agreed to use the opportunity to get me off of Keppra.
I had a seizure on the third day after starting to withdraw my meds, and one the day after. Both of them I induced with caffeine, staring at the computer, and stationary bicycling. I think they were both drug withdrawal seizures.
They wanted to do a "SPECT" scan. A SPECT scanner is kind of like a PET scanner. For epilepsy diagnosis, they wait until you have a seizure, and inject you immediately with radioactive tracer. The tracer goes to wherever you are using more blood in your brain, which is the seizure focus. Unfortunately, they wanted two good EEG recordings of seizures before doing the SPECT, to make sure I was having the same kind of seizures each time. I didn't have a third like the first two, so the scan wasn't done. I tried real hard. I did have a third seizure, but it was really weird, didn't show up on EEG, and there may have been some other stuff going on, so they didn't inject me.
After about a week and a half I could tell that I wasn't having the sorts of auras that lead to the seizures they wanted. They released me on the 12th day.
My experience:
The first day or two were by far the hardest. I was adjusting to everything, drinking a lot of caffeine, and probably experiencing some withdrawal symptoms. I was jumping out of my skin. Later, when I was off most of my meds, not getting enough sleep, and having a lot of "auras" I felt really tired and sometimes emotional. By the end of the week I was happy just to lounge and stare a lot. Personally, I really didn't mind being cooped up. The worst part of being in bed all the time was that my back ached. Also, when you are sitting and laying around all the time you don't feel good. I was able to keep clean pretty well with a washcloth in the bathroom. Basically, just like everything else at the Mayo, it was awesome. They do everything very well and I feel safe. There were some minor aggravations, but their organization is so professional and well considered. I would really miss not being able to go there.
The staff:
Honestly, everyone was great. I live alone in a strange town, and it was awesome having people be nice to me and take care of me. They checked my vitals, and did a neurological exam a couple times a day. Every three days or so they looked for bed sores. They did laundry for me. When I was in the bathroom they often arranged the room, or fixed my bed. It's really hard for me to ask for help, but I had to get over that, because you're really not supposed to do anything but stay in bed.
Suggestions:
1. Prepare mentally. Being prepared will make things easier. Assume that from the minute you walk in you will not be allowed to stand up, or move from your bed or chair without assistance. It doesn't matter that you were just out hiking alone the day before. It's part of the deal. They are providing you with a service and taking care of you, and it's your job to let them do their job. You may not be allowed out of your room for your entire stay. Rather than seeing these things as limitations, try to think about it as someone taking care of you and making sure you are safe. They know it's a pain for you. They are going to do everything for you, just be sick, or at least act like you are sick.
2. Bring several pairs of comfortable cloths. Tops may need to have buttons. You will have an IV in your arm for rescue meds or tests, and your sleeves shouldn't cover this up. Short sleeves are best, but long sleeves can be rolled up a bit. You can probably wear regular everyday cloths that are comfortable, but I bought pajamas especially for the stay.
3. Guys: Don't get a buzz cut thinking it will make things easier for them. Apparently, the short hair pushes the electrodes off as it grows. Get a buzz cut for your convenience or comfort if you like, but it's not necessarily better for the test. (It IS better for a short outpatient EEG, because it's easier to measure and put the electrodes on.)
4. You may have to have the barriers on all four sides of the bed up, or wear a belt that makes sure you don't run off after a seizure, or use a sling for when you are out of bed. Just accept it. Don't think of the bed as a prison, make it more like an adjustable dominion. Think about how you used to sit on the floor or bed as a kid. I found sitting sideways with the bed all the way up, and my back against the side barrier was most comfortable. The more you move and change position the more comfortable you are. You can stretch by kneeling, "standing up" on your knees with your back straight. I liked to sit on the side of the bed, with my legs hanging down, especially when eating.
5. You will have electrodes all over your head and a heart monitor. You may be plugged into the wall, or have a portable device. You will be on camera while in the room, and there will be a mike so that they can hear you. (They usually aren't listening, but they are watching pretty good.)
6. The electrodes will fall off and will have to be re-glued. You may also have to have the gel/cream in the electrodes "topped up" several times a day. This involves "scratching" your head, and it can get sore after several days. I found the electrodes were infinitely more comfortable without a head wrap.
7. Bring a bag for your stuff that will sit up on it's own on the floor when open, and that can be put at the foot or side of the bed. You can't get up without help, so you want all your stuff accessible.
8. They may set the bed alarm. You will find out.
9. They will probably have some kind of exercise equipment for you to use. The problem is that you can't get too hot or you will sweat and the electrodes will come off. You also don't want to get sweaty because then you need a bath.
10. Be prepared for them to move your IV every three days. (I got poked 5 or 6 times, including the do-overs.)
11. After a week or so they may want to give you Heparin shots to keep you from getting blood clots. I had mine 2x a day in the stomach (but they really weren't bad).
12. They will probably give you generic meds, so you won't know what you are taking. Don't worry about it too much, you are supposed to have seizures anyhow.
13. Being off your meds has psychological effects. You may feel like you are jumping out of your skin, or get depressed, or both.
14. You may, or may not, be able to take a real bath. I went 12 days without one, but I did pretty good with a washcloth and basin.
15. I can never sleep in the hospital. I asked the nurses to turn all the monitors off at night, and even had them cover one that didn't turn off. Ask them to shut the door, or shut it unlatched if they prefer. Ask them to turn off all the lights. They don't think about that stuff.
16. ASK THE NURSES TO DO STUFF FOR YOU. It was really hard for me to do this, it doesn't matter why, but I had to get over it. The point is that for the most part you aren't expected to do anything, and they are expected to do everything. I tried not to press the button unless I really needed something, but whether you have to call, or they are in the room for something else, ask. You are stuck in bed for a week. You can ask for your heart monitor to be changed, or the excess glue on your scalp to be cleaned up, or your bed made, or some laundry done. Don't put up with unnecessary discomfort.
17. Say "Thank you!" Appreciation makes them happy, and they deserve it.
Suggestions of things to bring:
1. Salt, Pepper, and some kind of spices. Hospital food can be really bland.
2. Wet Wipes, or some kind of moistened towel for freshening up.
3. Laptop, Cell phone, movies, etc. Extension cord.
4. Any and all toiletries. You may be in for more than a week.
5. Books
6. Coloring book and crayons or colored pencils (sharpener, eraser, clipboard).
7. Picture of mom, dog, or cat.
8. Teddy Bear.
9. Forearm exercise grips (to offset the teddy bear).
10. Snacks, and lots of them. The nurses should have access to a refrigerator that you can use.
11. Bible and prayer book, icon, devotions.
Things to do:
1. Sit and stare.
2. Watch funny videos on YouTube. (Groucho Marx is awesome on "You Bet Your Life", you also have to watch him on "What's My Line" with the professional wrestler.)
3. Movies.
4. Video games.
5. Crafts.
6. Reading.
7. I found I didn't really get bored.
8. Have the nurses bring you ice cream.
9. Have seizures.
10. Order room service.