Re: Being home has never felt so good-LONG POST! BEWARE

[Guest guest]

Tonia,

You post as long or as short a message as often as you want. While you were venting your frustration at the hospital, while lauding Dr. Rice, a valuable lesson was being taught by you to others facing hospitalization.

No matter how competent a person thinks they are, when you are in a hospital as a patient, unless you are a celebrity or politician, you become a helpless, dependent, piece of flesh on a bed. You MUST have an advocate who stands up to doctors or nurses, who demands answers, who demands attention, who refuses to be ignored or patronized.

Tonia, regardless of whether you were right or wrong in some of your assessments, you stood up for when he needed you most. Until you have a loved one stay in a hospital for an extended period of time, you have no idea how dehumanizing it can be.

Thank you for sharing your experience. I hope that continues to improve with each day.

In a message dated 11/8/2006 11:00:07 A.M. Eastern Standard Time, toniasdogsandi@... writes:

Hello everyone- Ahhh things have been so good being back home. is still doing well.I have been making him take it easy though.He is ready eat everything. I know he feels like it but things still must go slow as it is still healing.DR RICE SAID NEXT WEEK HE CAN RESUME "NORMAL" DIET BUT THAT DOES SCARE ME BEING SO EARLY.Anyone here start that early?I never really got a chance to go into our "story" about the Cleveland clinic and now I just dont even want to relive it but I will give details ANYWAY and a few heads up pointers for any one else with little ones going there.Dr Rice is the best part of all this ordeal!!!! was put on the ICU on the pediatric floor after surgery.DAY 1 was fine as he was in the recovery area of ICU after the operation.DAY 2 he went into a step down area of ICU-Things were ok at first but then began to have major blood coming through his ng tube.The nurse didnt even seem that concerned.My husband and I had to almost force her to call in a DR. in the mean time thought he was dying.We had to ask her to give him something to calm him down.His heart rate shot up and he was freaking out.She comes back to only say the Dr on call said she had a 911 call coming in and hung up.I had to go a lil postal and make her call back.Do they no think this was a 911.Get another DR then! The DR came and checked him and did say that was normal as many of you all did.But what if it wasnt? They didnt seem to follow up with a Dr.Day 3-DR Rice came in and said he needed to be up walking by now.He didnt know why he wasnt up yet! Ugh,talk to the nurses its not up to me.They tried to get him up but he was way to weak.Couldnt go pass the bed.They Noticed a bedsore coming on 's butt.The nurse said we needed to keep him rotated.Ok I know this,use to be a nursing assistant I can handle this.Well its a good thing.NOT 1 TIME DID THEY ROTATE HIM EVERY 2 HOURS-ME AND MY HUSBAND DID.I was the one who also asked for cream and applied it when needed.they never asked about it or even looked at it after that.Nor did any nurse ever ask when changing shifts if he was being rotated or looked at the sore.NOT 1 TIME.If any of you know these sores get very bad very quickly and cause major pain!Good thing I was there huh?Here I Start to lose my days-We went into a room now on ICU. DR Rice wanted walking several times a day at this point.They got him up 1 time on this day and no more. also was giving a breathing machine to work his lungs- not 1 time ever did they do that or ask if I was.It had to be done hourly 10 times or he could get amonia(spelled wrong).My husband and I DID THIS.I couldnt believe they werent walking him or doingthe treatments,or making sure he was turned every 2 hours in that bed! I could see if they asked if were doing it and then documented bUt never 1 time did they ask or do any of this.As days came my husband and I walked several time a day,continued his treatments,rotated him and applied med to his bottom as needed.NO NURSE EVER DID ANY OF THAT OR NEVER ASKED STILL FOR DOCUMENTATION ON HIS CHARTS.One night really late I decided to go back to hotel and try to sleep a few hours cause at this point was starting to rest through the night.I was gone only a few hours and we returned by 7;00 that morning.JAMES STARTED COMPLAING OF PAIN AND SOMETHING BEING WRONG IN HIS BELLY.We called the nurse she came in and looked around and basicaly didnt have nothing to say.It continued and got worse with the pain.My husband and I REALIZED the ng tube was not sucking out anything,it wasnt working.We called nurse back in and she looked,fitttled with it, and said it was ok.Well I knew it wasnt working.Hubby told her it didnt take a rocket scienitist to see that damn thing wasnt working NOTHING WAS IN THE CUP! She started twisting knobs etc and it wasNT working.She left the room came back and hubby asked had it been flushed the past 2 hours like it was suppose to be? No she said no on her shift.When she decide to flush it she realized then IT WASNT WORKING! Wow- it took that long.Once she cHANged it it began sucking up soooooo much stuff out of his belly it filled the lower container almost half full.They had changed it at 4;00 and it had not been working all that time and they never noticed! IT Took 2 people that were not medical employees to figure this out.Once it sucked up all that crap was fine!My hubby and I continued to walk .treat his bottom,do breathing machine and monitor all his machines.It got to the point that I even knew how to shut the machines up until they decided to come in and fix them.At many times I would still have to go to the nurses station to get them back there as they were reading magazines.They hardly ever came in to check on him during the night.We did have 2 nurses that did and they were a little more involved with his care.They were better than any of the others. also was having problems with the catheter.We were constanly having to try and manuver it to get it to empty into the bag.The nurses would come in AT OUR REQUEST and manually have to hold up the tubes to get it to drain- when they did that it would almost fill the bag.He did complain a bit about that tube so dont know iif it wasnt place right or what.OK time for me to stop complainINg but my point of all this is the Pediatric ICU sucked!The care there was horrible-there wasnt any.I will never allow if need be, for to go back on that floor! What would it been like for and his recovery if it werent for me and my hubby? What if would be alone alot of the time like so many other babies up there?Treatment from Dr Rice and the other DRs were great! I now see why he likes his patients on his floor!! I have not talked with DR Rice about any of this yet cause we didnt ever have the time. I will when we go back let him know all this and he will surely flip out.He said he was a control freak and hes not going to like the way those peole controlled his patient. I could understand if the nurses knew what all we were doing with ,and talked with us about it and gave the information to next shift amd document but they never did.I would love DR Rice to pull 's chart and see how and what they documented.I think hes going to hit the roof.If anyone that has a child and needs to go to Cleveland- I owuld highly reccomend them go but... that the the child go on the adult floor-DR Rice's floor where they know what to do and is monitored strickly by Rice.The experience there did kinda make us wonder how that hospital is one of the top.I guess the whole hospital isnt like that floor and maybe there only going on surgical care and DRs and such.That part was perfect.Anyway- Just wanted to give a over view of how things were for us there.We wont discuss the detailed problems at the hotels and how we didnt have a room available when we checked in late at night and how we had to go to another hotel in the middle of the night.Or how we went back to that hotel the next day(had to pack and unpack everything again) when a room was avilable and it was nearly 90 degrees in there and the air condition was turned off for the season,washers and dryers didnt half work and it stunk like a mens locker room.(sorry guys)lol When we went to another hotel The intercontinental when got to leave, they wanted us to re use towles to save water.I am paying $200 bucks a night and they want me to reuse towels???? Sorry- at home I might do that but at this price I want a clean towel every day and it better smell like downy.lol Also had to beg for extra coffee and sugar!What a experience this has been! I am so glad we went for the care from DR rice but come he!! or high water I dont want to ever deal with that place again unless its through him and his office.WERE SO GLAD TO BE HOME!!!!!! MY BITCH!NG SESSION IS NOW DONE AND I FEEL MUCH BETTER.LOL THANKS FOR LISTENING.lolIT WAS STILL ALL WORTH IT SINCE IT HAS MADE JAMES BETTER!WE GO BACK JAN 11TH AND 12THE FOR BARRIUM,24 HOUR PH TESTING, MANOMETRY,X RAYS.BOY DO I DREAD THE THOUGHT OF ALL THAT.I WANT TELL JAMES ABOUT ALL THOSE TEST UNTIL RIGHT BEFORE WE LEAVE-HE DOESNT WANT TO HEAR OF ANY HOSPITAL OR TEST AT THIS POINT IM SURE.Well off to go make him a cheesy omelate and oatmeal.MMM sounds good-I might have to join him.Hope you all didnt mind this long post-Tonia