thank you. i really hate to complain this much, sorry about that. i WILL complain to the hospital though. if we don't complain then they won't know what to fix!
I just saw your post and I am totally shocked!! I can not believe they had you up walking that soon and that many times...Omg...just unbelievable!! I was in ICU for 3 days and could not have possibly got up..i could not even tolerate lifting my head, i had to hold my head with my hands before i tried to turn or anything and wouldn't let anyone else do it because i knew when it hurt and they didn't! I can't imagine how you did it...I barely even remember most of the time I was in ICU except that my heart rate fell into the 30's and they kept trying to make me wake up to get my HR going faster and there was about 5 dr's in my room at one time so that scared me. I was then put in a reg room for two full days and sent home that night. I am 3 mo's post op and i can honestly say that this has been the hardest and most painful thing i have ever been thru so I can't imagine how you made it thru your ordeal at the hospital..God had to have helped you is the only thing i can think of for you to have made it thru that kind of treatment....i agree with the others, i would definitly make a complaint and i do not agree with lawsuits but this definitly warrants one!! Maybe that would teach them how "NOT" to treat someone after such a horrific surgery!! My thought and prayers are with you and i pray that your recovery is quick and the pain is tolerable!! This just makes me want to cry to think of anyone being treated this way...just don't know what else to say except may God help you thru this! Im sending you a big hug!! Keep us posted on your recovery.
Sheri
Glad u have documentation of who, what and where, and that u r finally on treatment for it...
Rest is best for all u have been thru....keep hydrated and I am sending u some Healing MoJo for u <3
yes, that was the poblem. i pointed it out in the hospital and told them that food tasted weird, that i had a large white scaly patch in the corner of my mouth, and that it hurt to swallow. my house is not well lit so once i got out today in better light we were able to look at it and it looks like cottaged cheese. awful. hopefully the nystatin will help soon. but it would be nice if it was almost over with instead of the treatment just starting. this shall also make my letter of complaint. i had m husband take a picture of it. he had also written down the name of the nurse and the time that i had reported it in the hospital.
i think that the steroids and the antibotics they gave me today should help me start feelig better soon. i'm still getting plenty of rest and fluids.
U r kidding...not sure y I am surprised...but I am!
Goodness it can cause ur tongue to not only swell and cause speaking issues, but breathing issues too....
I was going to ask, when u noticed it, my room mate had it while still in the hospital....
WOW....
oh i've had thrush plenty of times. what is unacceptable is that i showed it to them and they ignored me, leaving it to worsen over the course of nearly 2 weeks when it could have been adequately treated immediately following surgery.
Thrush is not uncommon post op after being intubated...if they scratched ur throat going in with the tubes or taking them out, thrush can occur....
U get a white coating, and ur tongue can swell and talking can become diff.
I am sure they gave u an antibiotic, also be advised this may affect ur stomach, that u have some reflux...so u may want to take something to help with that too.
i went to my pcp today. they gave me stuff for nausea and vomiting. they also noticed that the inside of my throat and mouth is covered in thrust. they'd never seen it that with with an adult before so they called over the pediatrician to look at it and confirm it. i felt gritty and my mouth was sore in the hosital but nobody would look at it. so it's been like this for awhile. they gave me nystatin. now the baby and i share a medication. :-)
really not feeling the great care i got at the hospital.
So sorry to hear wha you had to endure. Such a sad story and I'm shocked that you went home so soon. I didn't get out of bed for 3 days afer my 1st surgery. I would also complain about the mold on the bread this hole story is just crazy. I hope you have better results when going to the NS next week. I was totally opposite than Selma NS. I had 2 leaks and each time they had me on a 45 degree incline on the bed to keep the fluid from forming in the back of my head, but my leak was the size of a water balloon. It's a crazy ride we have to go on. Hope yours goes more smoother.
Linda :)
Oh yeah, it was bad at night. They would always knock on the door. My ears were so sensitive to sound ( for about 6 weeks). I finally had them put a sign on the door that said, "don't knock, just come in". I mean, they had to come in. I couldn't get out of bed without help....hahah, what on earth would I be doing that would require a knock? Hahaha...
they gave me a patient diary while i was in the hospital and my husband and mom filled it when i could't. they wrote down all the times, what they had me do, etc. to show how completely unrealsitic i think the doctors were about my recovery here is the breakdown.
i hecked into into th hospital at 5:30 am. surgery was at 7:30. they called my husband at 12:00 pm and he told him he could come back. at 12:25 pm they had me get up and walk to the bathroom. at 12:45 pm they had me do it again. and then again at 1:17.
at 2:00 pm they moved me to a room. they released me from the hospital at 2:00 pm the following day. that means that i was in the hospital for a total of 29 hours.
obviously, some of that was pre-op, some post-op and some surgery. so we'll take about 8 hours of that out.
in 21 hours, they checked my vitals 26 times, approximately every 35 minutes.
IN ADDITION, they asked me to get up and walk down the hallway a total of 19 times. that was almost once per hour. each time they had me walk it took me anywhere from 15-25 minutes.
my husband and mom recorded that the longest they allowed me to lie flat in my bed was during one stretch in the middle of the night when they let me keep still for a total of 33 minutes. other than that, they made me get up.
i took 2 showers, unattended, while in the hospital. i sat on the little chair in the shower. the nurse told me i had to do it but didn't offer to stay with me.
for the first shift, my pain meds, muscle relaxers, steroids, and anti-nausea were given me to on a schedule, every 4 hours. after that, it was when they thought was "as needed." during some of the times i would go for as long as 7 hours without any pain or nausea control.
due to the vomiting i lost a total of 11 pounds during my 19 hours in the hospital. i have since lost more.
this is my 4th surgery this year. i understand all about checking vitals and the importantance of moving and preventing clots, but keep in mind that was in the hospital for less than 1 ful day when you take out surgery time and during that time they had me walking almost, what, 4 hours of that? that seems way excessive.
in hinsight, realeasing m early might not have been a bad idea. at least here at home my husband can put me on a regular medication schedule and i can rest. i am still walking of course and doing my neck exercises but i can take things much slower.
and our bread isn't molded. :-)
i am going to send this documentation to the patient advocacy and complain to my surgeon.
Not all of us can lay completely flat.....but laying down even on an incline can be helpful especially if being upright is when u develop more symptoms.
When I had a CSF leak...many yrs b4 my chiari dx, this is what I was told to do...how ever post op from my decompression surgery, I could not lay flat, but being in a recliner was helpful.....
We r all different and issues with position actually indicate what issue u may be having,....so do make sure u report these to ur Dr.
It is interesting to see the differences in how we were cared for in the hospital.....I know I added the earplugs as the night staff at the hospital I was at went about things like it were the middle of the day in a downtown shopping district...not a hospital....they were bowling down the hallway with boxes of supplies, yelling to one another...and wanted my door open...I said no way, and kept closing it....I have to have my sleep....ugh....
I guess they r doing their job so long they forget they r care givers too, they just see it as a job and do not seem to care about the other aspect...us!!!
I keep reading about laying flat. I guess I couldn't because of my drain from the ETV. I still can't lay flat without getting woozy!
They definitely came in like every 60 minutes or so the first few nights to do all the nuero tests: follow the light, touch your finger to your nose, squeeze my fingers, hold your hands out like you are holding a pizza box. What's your name, your birthday, where are you....push and pull with your feet. Oh those were the days... I would finally fall asleep around 3 am ( after they took blood) and feel like I was finally really resting, when the docs would come in for rounds.
I didn't finish my reply last night. My computer was dying and I didn't have my charger with me. The bread thing is terrible. I think at some point you will get a survey to fill out about the hospital. make sure you complete it.
I to was out from icu one night then home. Doesnt make sense. My family says I wanted to go home. But that doesnt mean theu should have let me. Ever since I got home the day after surgery, ive been takin care of myself and 9 months later now o still feel like crap. Take it easy.
Moldy bread..deff report that!! That is like the cherry on top of all of it...I am sorry but nothing is right in ur care.
If in laying flat and drinking ur water u still r having issues, try some caffeine...it can help...just not too much.
Only get up to go to the rest room.....when I had a leak, I even ate laying flat I just rolled on to my side....but the more u stay flat and rest and keep hydrated the better chance of the leak sealing on it's own.
I do not understand them keeping u moving when u do need to keep still for a time post op to allow things to heal....my leak I had was the result of a student nurse pulling me to a sitting position when I was sleeping , she was trying to waken me to put me on a bed pan....I realized and laid back down and asked if the time had passed for me to be up as I was instructed to stay flat, all she wanted was me on the dang bed pan and could care less....so I know it is important for the patient to stay flat....and for how soon u were up, I figured it had to be a leak.....
Hang in there....and if in 4 to 5 days u feel the same ask about a blood patch.....
I'm so sorry your experience was like that. I'm glad that you have gotten sound advice now. Rest is what you need and the fluids. I would file a complaint. The NS should be giving better instructions to the nurses in care of his patients. Take care and hope you have better days ahead.
i forgot to mention that right before i checked out they gave me lunch and served my sandwich on molded bread. i am not joking. i took a picture of it. ou can see it on my profile. :-) good thing i stopped eating before i ate too much. should i fle complaint with th hospital advocacy about everything? this seems to be a nurse/hospital problem and not a ns problem since he basically just uses the hospitl for priveleges and they weren't exactly HIS nurses.
I'm with sweetjen. File a complaint. That sort of treatment is completely unacceptable - not to mention dangerous!
I'm glad to hear you're doing well, and I hope the rest of your recovery goes smoothly.
i wanted to get up and move around but i really feel that the amount of movement they made me do was unacceptable. please don't think i am xaggerating when i say it was every 20 minutes. i worry about clots too but i had the leg pumps on (god i love those!) and i took little strolls around my room. the nurse was still getting onto me about no movig enough. yet i was only inthe hspital for a day and still doing all that! i hadn't had time to get "lazy" yet. :-)
i am very surprised too. i will deal though and we;ll get through this together!
This is so unacceptable. I am flabbergasted. My surgery was on Tuesday and I was in bed until Thursday. I only got out of bed enough to sit in the chair until they wheeled me from ICU to the regular ward. I began walking WITH ASSISTANCE that night. I wasn't even allowed to get off the toilet by myself. I also had the drain in my head ( I had an ETV two days prior to my decompression). You really are not supposed to move around so much ( from what I understand) because you can CAUSE a leak, by all the movement.
I feel TERRIBLE for the way you were treated. I would file a complaint, seriously. I'm so sorry. :-(
i believe my nurses had little education on chiari and the decompression. i did a lot of educating while i was there and NONE of them had heard of eds.
i live 3 hours from my hosp thereabouts but will go to my local one with a good ns dept if there is an emergency just in case. i called the ns today and they told me that i probably have a small leak. told me to keep flat and drin kfuids and hopefully it will clear on its own in 4-5 days.
i am also stunned they released me so quickly. and had me up moving right away. literally guys, it was less than an hour post-op. i wasn't even in the room yet.
i am on steroids so hopefully that will help with the swelling and stuff.
at hope my two elderly aunts are here to help with my kids for a few days as is my mother. my husband is taking rund the clock care of me. so i am well taken care of.
thanks for the messages. i appreciate the help. hurts to do much but wanted to chck in with you lovely people. :-)
Oh, yeah. The nurses were great as they also had a lot of knowledge on post-op of the CM person. He keeps his CM people on the same unit with the same group of nursing staff. When the meds made me puke, they got on the phone and found something that i could tolerate. As far as discharge meds go. I'm thankful for the pain management. This surgery hurts. I still need 1/2 vicodin pill in the evening when my neck gets sore from holding up my big head. I tried to be the martyr but I'm sucking that one up. Pain pills are for people in pain.
I had the compression devices on my legs to prevent clots on all the time except for 1 hour for hygiene. My NS does about 3 CM surgeries a week and has done in the hundreds over his career. He was very adamant about the 3 day bedrest to prevent CSF leaks. Thats why the foley stayed in to prevent me from getting up. He actually raised his voice at me "lay down flat" when I told him I had a headache, the head of my bed was up just a little. I actually had two surgeries done at once, laminoplasty(big OOch to that one!). He keeps people for a week because a lot of people come from far distances. What he lacks in bedside manner, he makes up for with his knowledge and skill. He's blessed with hands that heal. God Bless him!
I wanted to mention since u brought up the clots, that I had these lovely things on my legs that moved and were quite strange but were there to avoid a clot in my legs, and I got an injection in my stomach for it as well...ouch....every day I was in ICU....2.5 so 3 shots.... once the tubes were out I was up using the toilet in the room.....and was then moved and was up walking using a walker....I do not hear to many mention that....hmmmm
Mayb cuz I am old huh?...lol...nah....it is funny how u recall certain things only after someone else says something tho....I forgot about that dang injections into my stomach,.I hated them, especially the last one as I was getting off the stronger meds then...really felt that one.