Ask for a cot.

[annb]

All of you caregivers who have not been through surgery yet or who are going through it now make sure you ask for a cot. No one offered me one last night but this morning the most wonderful Patient Care Tech came in and asked if I wanted one for the rest of the stay. I am so grateful. I do not do well without at least a little sleep. She said patient families should ask for anything they need and a decent hospital should be able to provide it. Do not wait for them to offer.

Ann

[catwoman]

Ann:

When my father-in-law had his 2nd VR surgery in December 1989, my husband, his brother & I camped out several nights at the hospital, since he was in very critical condition post-op. The hospital (Medical Plaza, Fort Worth) had a large room with roll-out beds hidden behind panels. They brought in sheets, blankets & pillows for us.
Even though my husband & I only lived 2-3 miles from the hospital at that time, not having to leave the hospital was very comforting to us, given his dad's condition.

When I had MVR nearly 4 years ago, my mother spent one or two nights in my room. Baylor has very nice recliners that make out into beds.

[Blanche]

Annb,
Thank you for the reminder. It has become a hard and fast rule in our family that when one of us is hospitalized the rest of us provide round the clock support. The patient is never alone. But, one night my son failed to ask for a cot when his significant one was hospitalized. He waited so long, none were available so he spent the night in a very uncomfortable chair.
Blanche

[Nancy]

Having been through many, many years of helping Joe when he was hospitalized, I second Blanche's view that patients should have family there around the clock. You really cannot imagine in your wildest dreams what happens when no one is there, and sometimes even when someone is there.

And this should take place in the ICU as well, even though they don't like it at all. The worst problems occurred while Joe was in the ICU at one particular hospital, when I wasn't allowed in. Complete and total neglect!

I was offered a recliner, but no cot. The recliners are not comfortable.

Do whatever you have to do to get your loved ones good care.

[MaryC]

Ann,
This is a good reminder for families. We didn't know if my husband was going to be spending the night with me. I had one incident my 1st day out of ICU that made my husband decide he needed to be there with me. We asked late in the day but the hospital was still able to get him a cot. I was really happy to have there with me and I believe it made my recovery smoother. I didn't have to wait for assistance to the restroom and other things as they came up.

I know I need to keep telling my family how much I appreciate their support during my hospital stay - and on going. I am blessed to have them!

[Arlyss]

I have been in 3 different hospital settings with my husband since 1990 - associated with the initial illness/failure of his bicuspid aortic valve, three heart/aortic surgeries, a major stroke, and his TIA.

Yes, it is so essential that you stay with your loved one.

Sometimes, a private room was not available, and when the other bed was empty, the nurses offered it to me. Even when the room was not private, I had a cot right next to his bed, with curtains around us both for privacy!

Following his major stroke, the first night I was up all night, still in shock. But by the second night, I knew I needed to lie down. I asked for a cot, and nothing appeared. Finally I told someone that if a cot did not appear I was going to become ill from exhaustion and they would have another patient on their hands! A cot magically appeared , and I carefully guarded it, being sure it moved with us whenever he moved to another room! I have very sweet memories of the kind nurses who put warm blankets over me at night, as well as the one who brought me ear plugs. Taking care of stroke victims is very hard, physical work, and yet some very special individuals took time to comfort me too.

When you stay at the hospital, bring as little as possible with you. You will be distracted by so many things, and very tired at times - so leave your valuables at home!

Another thing I might add is not to let anyone think that they can be less on top of things because you are there. The hospital and its staff are responsible to provide the proper care - no excuses! - and you are there to be sure it is done and to comfort your loved one. (I was rather amazed once that someone attempted to excuse some carelessness by saying that I was there to look out for my husband so it was ok!)

Best wishes to all,
Arlyss

[geebee]

My SO and I were very lucky during my last OHS. I had decided to have my surgery at a local hospital that had just started an OHS program. I loved my surgeon and he would have done the surgery at the premier heart hospital in Cincinnati but I chose the other hospital because he was the head.

We received so much attention it was like we were celebrities. I had a private room after CCU and there was a cot waiting for Chris when we arrived in the room. They brought meals for him as well as me and included him in snacks and the like.

A cot is a necessity and all hospitals have them so do not let them tell you there are none available. During my volunteer running around the local hospital, I have seen storage rooms that are chock full of such items.

[Lynlw]

My SO and I were very lucky during my last OHS. I had decided to have my surgery at a local hospital that had just started an OHS program. I loved my surgeon and he would have done the surgery at the premier heart hospital in Cincinnati but I chose the other hospital because he was the head.

We received so much attention it was like we were celebrities. I had a private room after CCU and there was a cot waiting for Chris when we arrived in the room. They brought meals for him as well as me and included him in snacks and the like.

A cot is a necessity and all hospitals have them so do not let them tell you there are none available. During my volunteer running around the local hospital, I have seen storage rooms that are chock full of such items.

GEE, that reminds me of my fav children's hospital, Justin went to CHOP when he was born, until h was 10, looking back I'm surprised more parents didn't go nuts, you can't imagine having the stress of finding out your baby needs heart surgery THEN having 6 babies in a room w/ 6 sets of monitors going off and 6 mobils playing 6 different songs on top of everything else lol. (especially when you gave birth a few days earlier you are so sore and hormone are everywhere. and this is looking back 19 years)
When he was 10 his surgeon and pc opened a new heart center they had all that nice dupont money and the hospital really wanted him so gave him everything he wanted. He was of the opinion that all the parents should have to deal w/ worry about while their kid has heart surgey is the CHILD, SO all the rooms not only were private, w/ the bed/crib for the child and 2 beds for parnts/guardians, bathroom and 3 meals a day came up from the cafeteria for the parents (we filled the little menu like patients) free parking and laundry on the floor. The CCU was right down the hall, but when you checked in and got your room, it was still the parents room when their child was in CCU. It made such a huge difference in everything instead of worrying about where to sleep how to afford parking and food ect. His last surgery was at CHOP again and this time it was even worse dealing w/ all the extra crap knowing how unecessary it really is. I know more hospitals are starting to realize how important family/caregivers are during the whole process and how much better it is for the patients recovery to have someone there 24/7 but most could do alot more to smooth the process then they do.

[geebee]

I agree with you, Lynn. It seems, sometimes, that the larger hospitals might be too busy to worry about such caring items that mean so much to the patients and family. I am NOT saying that is the case with all larger hospitals so I hope no one jumps on me about that statement. The larger hospitals do offer excellent care from a medical standpoint but, often, the smaller hospitals (who try harder - kind of like the old Avis commercials) spend time on loving care for all.

Of course, it is important to make sure those small hospitals have top quality doctors and staff as well as the caring touch stuff because, after all, the most important thing is survival.

[Debbrn]

I agree that a lot of the large university hospitals treat patients like cattle. They are arrogant and can be uncaring. We are a captive audience so they do not have to treat us like we need to be treated. Not to mention that hospitals are not the best at managing money. But, a lot of the large (university) hospitals have a lot more patients that do not pay or pay less than what it actually costs to take care of the patient. That cuts deeply into the budget for meals, VCRs ect.

Because I have been a patient and a family member of a patient so many times I try to be as helpful as a can be as a nurse. Many nights its all that I can do to take care of the patient. One night I had a parent get mad at me for not making her coffee when I was running around like a chicken with my head cut off taking care of my patients including her child.

I don't know what the answer is, but I know it is going to take a team effort.

[Lynlw]

Since many heart surgeries are not emergency ones, these are really good things to ask about when deciding Who to LET operate on you and your loved one. It is easier these days to travel or choose where to go in many cases, ( altho an still be a PIA deending on you insurance)and I really recomend touring the units and floors before, if at all possible. and ask questions like where can a family member sleep, what hours can you be right next to the patient, ect. of course, staff can and will lie, BUt if more people let the bigger center know that aftercare plays a big part in the decision making in who/where you will have surgery, things will probably get better so they can get more patients and of course their money. I know in some cases insurance /logistics make it harder to be choosy, but IMO it is worth asking about travelling. Alot of times since valves are congenital heart defects, you can usually provide the necessary papers showing why insurance should cover traveling to a center that speciallizes in adults w/ CHD if you want to use that as a reason to go to an out of network hospital. Except for Justin's first 2 surgeries when we lived in philly and he went to CHOP, he has never gone to a hospital in the same state, We live in NJ, outide of philly but he has gone to doctors at Del, Philly and Boston and blue cross always approved it as in network, no extra cost, because he needed specialists in CHD

[Nancy]

I wouldn't have expected anyone caring for my husband to get coffee for me, there was a cafeteria and machines available.

I did expect, however, that the caregivers would have monitored him after his stroke so that he did not pull out his feeding tube (overnight in the ICU, with low grade care), and would not let him fall out of bed onto the floor (overnight in the ICU with low grade care), both times when I was not there, and I was there a LOT.

While he was recovering from a brain bleed, and incoherent, he was left for long periods of time with no supervision, and that is shameful. And yes, I did complain, and loudly and even had a meeting with all the supervisors. Even after that meeting, Joe climbed out of bed and fell on the floor in an overnight setting. So I guess, complaints mean absolutely nothing. Staying with your loved one is what has to be done, since in some institutions, care is not what it should be, and you will have no way to know which ones are good and which ones are not. The one Joe was in is freshly built, gorgeous, state of the art, with every machine imaginable. Care was sloppy and poor.

So, for all of you who are monitoring this site, I am telling you to make sure you are there every waking moment, or have someone else in the family there, ICU, CICU, regular floor, no matter what.

Get a cot, sleep in a recliner, sleep on the floor, if you have to.

[Lynlw]

I think this is a very important discussion and don't know if everyone checks the sig other forum, I wonder i this should/could be moved to wear move people will see this, like maybe preop, just to remind others going into surgery, this is that important to take care of and make plans for (having someone there 24/7) before they have their surgery.

[annb]

We have had someone round the clock with Byron but the care we have received at St. Francis in Greenville SC has been fantastic. Byron has had some vivid dreams and woke very disoriented so I was glad I was there but the nurses were in the door quickly because he had pulled his monitor out. I think someone needs to be there not just to ensure the best care but to reassure the patient on an ongoing basis. I am hearing that the disorientation is common on the cardiac floor and most patients do not remember how to call for a nurse. There are so many buttons on the bed that it is hard to find the right one especially in the dark. There are so many reasons to stay with someone in this kind of situations. Byron has excellent care and can fend for himself but I will not leave him alone.

Ann

[Susan BAV]

My husband stayed with me nearly 24/7 during valve replacement and a followup stay; and that was terrific. He had to put his cot and pillow and sheet request in early, the nurses said, as they could run out of cots.

Also, I always try to be a really pleasant and non-demanding patient (edit - I also didn't want to call the nurses in for every simple need I had.), but I've seen that doesn't always get you better care; in fact sometimes the opposite and you get totally ignored. Everyone really needs a patient advocate for optimal care.

Like most families, I guess, we too have had some awful medical events and extended hospital stays which were always hours or further from home, with my dad and my son, and we always stayed with the patient as best as was humanly possible, even in shifts with other family members if possible, on cots if needbe.

Some of you have had many events though, and such lengthy hospital stays; I can hardly imagine the demands on you in what you've gone through. After my dad's final exhaustive and brutal illness, my mom was a shell in a state of total exhaustion for a long time:(. Your love and endurance is a beautiful thing.

[Debbrn]

Nancy,

I totally agree with you that what your husband experienced in the ICU was inexcusable (sp?). I agree that I family member or friend needs to stay every possible moment.

Next time I have surgery, I will not have a family member or friend be able to stay with me. There just isn't anyone. Any ideas on what I should do?

Debbie

[Nancy]

Make sure you have a patient advocate (in hospital person) who will come and see you, and tell them of all your concerns. The ones I spoke with were very sympathetic and nice. I am not sure how much clout they have when things go wrong, and they are employed by the hospital itself. But they are there for the good of the patient (I think), unless they are there to mitigate any potential lawsuits :rolleyes:

I also think you should speak with the Nurse Manager of the floor you are going to be on, and tell that person that you are a medical professional yourself, and know what good quality care is all about, and also know what poor quality care is all about, and that you want to have only the best assigned to you, because you will be complaining if it is not right. And bring a notepad with you and have it handy. If things go wrong, start writing right in front of them, asking their full name first.

[Granbonny]

Sorry I missed your first few posts....Mike and I e-mailed one another about his stay at St.Francis....a few weeks back..because my sister lives in Walhalla,S.C...little did I know that she would have 2 stents put in last week at Greenville Memorial hospital..2 clogged arteries.Age 60...She had a rough night..due to her heart Cath being done in Seneca, S.C. and had to be sent by ambulance to Greenville memorial.6 hours later. I was her caregiver that night...I found someone to show me how to let the chair down into a bed? If you call it a bed.:p However, I may as well just sat in a chair all night...had to have a foley put in..had an EKG at 2 a.m.flat on her back from the sleeve still in..Pain....After 4 a.m. when they gave her morphine and pulled the sleeve out..I think I slept 2 hours....then had to drive her home, ect...I was exhausted........so my point is..try to have several family/friends that can take turns staying....My Hubby/daughter had a room across from St. Joseph's in Atlanta at a motel. They took turns..staying with me at night so they could get some sleep........Sister and I did the same thing with our Daddy before he passed.Sleep is important....When do you think your Hubby will be able to go home?Soon, I hope..I live about 100 miles from Greenville in Helen Ga. Bonnie

[davidfortune]

Personally I didn't need or want my wife to stay overnight at the hospital with me. I was feeling good and honestly preferred that she go home and get real rest.

I think it depends on the patient and their condition. Some of us won't want or need round-the-clock vigil by family. I think listen to your patient and evaluate the need.

If the need is there by all means stay - and get a cot. If there isn't a true need and the patient is honestly comfortable with family going home then go home and get real sleep.

David

[Bradley White]

My personal sentiments when I was in the hospital were along the same lines as David Fortune's. After having people in my room all day long I was ready for everyone to leave by 10 pm so I could have some privacy and get some rest. I also knew that they would have a much better sleep at home then anywhere in my room where there was constant beeping and lights from all of the machines. Just how I wanted it. However, I strongly agree that if the patient wants someone to stay in their room the request should be accomodated without incident.

Brad

[Jkm7]

I agree with Brad and David. Much as I adore my DH and was so appreciative of the wonderful care he has always given me, I wanted him to go home and get some rest. He was looking so exhausted I knew it wasn't going to do either of us any good for him to keep pushing himself too hard.

We were in our fifties so it isn't like we were so very senior.
It is just such an emotionally and physically exhausting experience that sometimes the patient has more peace of mind if they know their loved one is being considered in the whole scheme of what is best for everyone.

Masschusetts General Hospital CICU and Cardiac Floor is wonderful about taking telephone calls 24/7 from patients' immediate family and giving frequent updates to keep husbands/wives etc informed that we were grateful DH could call anytime he wished to check up on me. They were very informative and polite and helpful at all times he called and never discouraged him from continuing to call whenever he wished. We live about 30 minutes from MGH so, if necessary, he could get there quickly.

[Susan BAV]

After I read the two male members' replies, and I considered that all of the previous replies had been from female members (and also before I read the last reply from a female member right before this one I'm making), I decided to ask my husband how he felt about it. Specifically, I asked him, that if he went through OHS like mine, would he rather I just let the hospital people take care of him; or would he prefer I stay with him. He said he would have wanted me there for him like he had been there for me.

[Lynlw]

I just wanted to say over the surgeries and several hospital, i've seen and caught a few things that could have been problems, and something that should seem simple like staff getting meds to patients a the correct time doesn't always happen. Sometimes, it isn't about keeping comfortable, as much as it is from keeping something from happening, like falling out of bed, making sure they are the right meds ect. Actually I was in the hospital for asthma when I was in my 20s by my self and after the IV was hng the nurse came running back in and looked at the bag and said, you aren't allergic to any antibiotics are you? I said well I guess we wil know with in the hour won't we. I alwasy check anything they hang on Justin, from IVs to blood, it's too easy to make a mistake, especially once the patient gets to the floor and the nurses have more than 1 patient

[Blanche]

My husband spent alot of time in alot of hospitals with endocarditis, valve replacement, three strokes, internal bleeding, and other conditions that stressed his judgement and ability to care for himself totally. I would hope that my opinion is seen as that of an informed caregiver. I don't see this as a gender concern. I see it as a protection issue.

Our family does not leave people who are not fully functioning, physically and mentally, alone in hospitals to fend for themselves. As far as my husband is concerned, he seemed happy to have his loved ones around him. But, still, I would not give a fuzzy rat's butt what he thought. We want our loved ones to get out of the hospital alive so we are with them every minute...in their rooms, when they receive exrays, etc., round the clock.

One does not have to be an idealist to understand this, being a pragmatist will do. With all of the problems that are happening in hospitals, and with the lack of adequate nursing care, it seems to me that families have no other choice than to protect their own. It is my choice.

Kindest regards,
Blanche

[Nancy]

Amen, Blanche!

Those who have had excellent experiences in hospitals with no problems of any sort are very, very lucky.

I guess I have been in hospitals as an observer and caregiver way too many times, as you have, and things happen that scare me to death, not only the ones I have mentioned (and many that I haven't mentioned) which were egregious, but others which I caught before they became egregious. There are just too many different individuals taking care of a patient, and too many opportunities for errors. Some don't read the chart at all, some read it and don't understand it and won't let anyone know that fact, some care, others don't care at all, some are smart, and some are not. There are medication errors, continuity of care issues, miscommunications, and just plain old mistakes.

I will say that in all of the years of being with Joe, there have been some very excellent people and caring people. It hasn't all been bad.

It just needs watching from someone who is heavily involved with the patient and really cares about that person.

[briansmom]

We have a motorhome and the hospital had an area specifically set aside for motorhomes. They even delivered food to us! It made a difficult time a little easier. My husband and I (and a few other family members) were able to take turns with our son but be close enough to be back in his room in minutes.

[davidfortune]

Agreed on all counts. I was fully aware and functioning my first night in ICU. I think that evaluation of the physical and emotional state of the patient and care giver is necessary. My point was only that not everyone needs 2 hour family member attendance.

I didn't. My Dad didn't. My sister didn't. Many don't. Many do. Evaluate the needs as appropriate. I don't think it is only a male thing. My sister also was fully lucid and self-aware afer her surgery. She didn't need us to stay.

[Blanche]

David, you always make valid points. However, I maintain that one should be safe rather than sorry. There are so many things that can cause concern with surgery of any type. You are obviously an exception, someone who could monitor himself in ICU and during the rest of the hospital stay. However, there those of us who need the protection, and I don't say protection lightly, of a significant one or a hired human with a clear vision and a clear mind.

I respect your wish to face this alone. And, I applaude your ability to handle this by yourself. Yet, I have seen so many people here who have had to handle problems post-surgery alone. Glad you were not one of them...exception, not the rule. Do as you wish. For me, I will always have an patient advocate with me, as will any of my family menbers, because we are all well aware that mistakes happen and it takes a a clear vision and clear mind to deal with that.

Glad you had a successful experience.

Blanche

[Arlyss]

Reading David's experience reminds me of my husband in 2001. It is wonderful when it goes like that, and I am so glad for David and everyone who experiences this - it is the way it should be!

My husband went into surgery strong and healthy in 2001. Surgery was Wednesday morning, he was discharged Saturday morning (he wanted out on Friday!!), handled the trip home well (about 2 hours of his wife's driving in southern CA traffic!), and was home at noon on Saturday. He had zero complications and a fantastic recovery. I remember being shocked when I walked into ICU to see him the first couple of times - he looked so good, I couldn't believe it! Yes, it is possible to come through like that. He was such an easy patient for everyone - doctors, nurses, and me! But if anything had changed, which it could have, I was there or within very close reach.

It is also possible to be more complicated. My husband was very ill in 1990 - his valve and heart failed rather quickly, and he was very sick going into surgery. In 2006, no one could really know just what to expect from a man who actually should not have survived his massive stroke two months earlier. He did amazingly well, considering how complex both of those were. It was very important that I was there as much as possible. Yes, we do need sleep, but that is where the cot comes in!

Emergency situations - my husband's stroke and TIA - were the nightmare situations for me. I was terrified both times. When the brain is not functioning, it is a night mare. These are unstable situations and the patient needs you!

Today health care is more inclusive of family, which is a welcome change. In 1990, my husband was admitted the night before surgery - all heart surgery patients were back then! - I was "sent home" at 10 PM - not allowed to stay. It was a very long night! Along with all the other planning, family members of the one having surgery should think in advance about what they are comfortable with, but also arrange to change those plans, especially if things do not go as smoothly as hoped!

For those who have never been around a hospital, they will not even know that they can ask for things such as a cot! You should also be informed about charge nurses, patient advocates, etc. prior to surgery - review the packet of information, and if it is unclear who to contact when you need help, ask ahead of time.

The entire medical system exists for only one reason - because there are patients and families. Help them do their jobs by letting them know what you need.

Blanche and Nancy, you have such depth of experience. I am very touched by your words.

Best wishes,
Arlyss

[Granbonny]

Those of you who posted that you sent your loved ones home to sleep..I imagine that you had your surgery in your hometown?..Not too far away from the hospital....However, I would say..that probably 80%of all AVR's..are done in a hospital in another town?(larger hospitals). Take my home state of Georgia..The most VR's are done in Atlanta..Emory/St Joseph's....Mine at St. Joseph's 100 miles from where I live....Most of these larger hospitals have rooms nearby..St. Joseph's has a Marriott on their complex...I know several Atlanta members..Bet their family members stayed overnight..rather than fight the morning traffic.:p ..........Bonnie

[annb]

I had to reply to all of the posts that they did not need anyone at the hospital with them. My poor husband is one of those guys who thinks he can do everything on their own. His brother had stayed with him during the day for the first 4 days out of ICU and I spent the night with him. Brother went home on Saturday and Byron decided he did not need anyone during the day on Sunday. I spent the night Saturday night, left about 11 am and came back about 5 pm to spend the night. All was well so I felt safe to do it the next day. I waited until we had seen the doctor and then went home to shower, nap(there is no rest at the hospital even with a cot), feed our cat and dog and do some laundry. At 3 pm Byron called and said he did not know where he was. I told him I was on my way and tried to finish up a few things. I called the nurses desk and asked that they check on him and told them I would be right there. Before I could get back to the hospital he called again and said he did not know where he was. When I returned to the hospital he was sitting in his chair and had not left his room. He had been walking several times a day so this was unusual. His face was flushed and he indeed did not know where he was. Not only that but when I reassured him of where he was and why he was there he could not remember from minute to minute and kept asking me the same questions over and over again. I paged the Patient Care tech and she was on a break. I tried to find his nurse and could not. I finally went and got a themometer myself and his temperature was 101. We had not had a fever at all and he had charted in our notebook that his temp was 99.1 an hour before I arrived. I went to the nurses desk and told our nurse and she came to check on him. She of course had to recheck his temperature. I explained that he was having memory issues and she said she would have to question him to assess his memory loss. It was pretty apparent that his memory loss was complete amnesia of the entire couple of months leading up to the surgery. She left and went back to the station and I found our PCT in the hall. She was familiar with Byron and immediately knew that something was wrong by his expression and his constant questioning of where am I and why am I here. His temperature by this time was 102.7. In 2 hours his temp had gone from 98.1 to 102.7 and he had complete memory loss. He knew who I was but did not recognize his nurse or the PCT. Needless to say he was very frightened and so was I. The nurse finally called the doctor and they cultured blood and urine. They also x rayed him for fluid in his lungs. Fortunately none of these things were the cause of his fever. He had partially collapsed lungs at the base. They started more aggressive breathing treatments and things started clearing immediately. I do not think I could have prevented the fever but I probably could have kept him from getting so disoriented. I also would have caught the fever sooner. This nurse did not know us(we had alot of the same nurses throughout our stay) and did not recognize the strange way Byron was acting. We had gotten excellent care at St. Francis before this event and afterwards. I do not blame the nurse I think she was new and was just not as patient oriented as she could have been. The PCT was more upset about the situation than the nurse because she knew us. I should have been there to make sure things were right. I am glad those of you who sent there loved ones home had good recoveries but I just wanted to let everyone know that things can go wrong quickly even with the young and strong patients.

Sorry this is so long but it was traumatic for both of us. Byron is still suffering from some memory loss although not nearly as severe. The only explanation we have for that is the fever.

Thanks for reading,

Ann

[Nancy]

Oh Ann-

What a scary, scary thing for both of you. I have to ask this--Had anyone done a complete neurological workup on him looking for signs of a stroke or bleed? If not, maybe you should ask that this be done.

Yes, things can go wrong in a heartbeat. And when you discover that no one even recognized the problem, it really makes you wonder just how much time elapses from one nursing visit to the next one.

One time, just in passing, the housekeeper told me that she found my husband laying on the floor a couple of days prior. He had fallen out of his barcalounger, and they just left him there. None of the nurses told me about it. Just another example of what kind of lousy care is available.

This is not your fault in any way. He should have been given proper care, and his nurse should have been popping in regularly just to make sure he was OK.
When you finally get the hospital bill, you will see just how much they charge for this "exceptional" care. It's astounding, and we all should expect first class care at those prices.

I DO think it is the nurse's fault for not noticing that your husband was so disoriented.

[Blanche]

Ann:
I hear your words and I understand because I was there when things turned bad and I had to convince people that my dear one was on the brink of disaster. Like you, I did my best, but was not prepared for the things that can happen when hospital staff is stretched thin. I hope that nobody finds themself in hospital a few days before or after Christmas.

Al had a a bleed from the cath that they did that day. They left the sheath in for someone to take out in the morning, but during the night he began to bleed out. I woke to find him covered in his own blood. I was sure that I would be a widow soon. His nurse, a sweet, small woman of 64 was beside herself. Another nurse, a weight lifter, came to help. He held Al's bloody site closed for nearly one hour until others helped him. I can't even talk about the rest of this...Let me just say, If I had not been there and if the male nurse, Eric, had not been there, I would have been a widow on December 27, 2000. The picture that stays in my mind is that of the doctor on call, a Dr. Digornio, a cardiologist, who gave the nurses instructions by phone......even though that phone was at the nurses' station not more than 20 feet from the patient.

I encourage everyone who has a significant one in hospital to provide round the clock protection for their loved one. Although my experience is probably unusual, the usual things that happen in hospitals when there is no oversight are dramatic and deadly. This is not a matter of someone's confort, patient or significant other. It's a matter of getting the person out of the hospital alive...

I have read that people who die in hospitals from hospital error of one kind or another is between 98,000. and 200,000. a year. And, that does not include the patients in hospital who are damaged by feloneous acts by non-hospital personnel. Many hospitals are not safe places... The following link includes more information. http://www.consumeraffairs.com/news04/hospital_errors.html

Kind regards,
Blanche

[Lynlw]

wow this is really something you can sort of picture altho my mind can't quite imagine how much that would be
The equivalent of 390 jumbo jets full of people are dying each year due to likely preventable, in-hospital medical errors, making this one of the leading killers in the U.S.,? Collier said

and these are just the deaths, can you even imagine how many errors didn't end in death?

[Arlyss]

Long before I ever met my husband, I had learned that patients need their families when hospitalized. My father suffered greatly with the cancer that ultimately took his life, and during his hospitalizations - back in the 1970s - our family learned how important it was to be with him. We cared for him as much as we possibly could because he had a great deal of pain and needed a gentle touch. My father had been stable, and my mother needed to return home, many miles away, just over night, to deal with some business. I went with her, and the call came in the middle of the night that my Father was bleeding, and we must come immediately. The only comfort was that other family members were with him - he was not alone. After a very fast drive back in the middle of the night - fortunately, no traffic - we went to his room and the bed was empty. Of course we thought we were too late to say goodbye. We found that he had been transfered to ICU, and was still alive. It is many years ago now, but I never have forgotten that feeling of walking into that room and finding it empty. It taught me a lesson I have not forgotten. My husband did have some bleeding after coming to ICU following his last surgery, a year ago.

Yes, things can change quickly. There is a reason for Intensive Care Units - because so much happens in those first hours after surgery. I was told once that today it is quite rare to die "on the table" during open heart surgery that is elective - but those first hours afterwards are critical. This is when complications - bleeding, stroke, lung problems - may first appear on the scene.

Blanche made a very important point about avoiding being in the hospital around a holiday, such as Christmas. When it is possible to choose the dates, try to avoid holidays. (Even if they are at work, their mind may be on that holiday party and not on you!) Also avoid having surgery too close to the week end. You want to be about ready to leave by the week end yourself! Doctors and nurses like to take the same holidays and have week ends off just like everyone else. You want them to be there when you are - you do not want to be "covered" by someone just filling in for them.

Best wishes,
Arlyss

[Jkm7]

My OHS was an emergency and was just days before Christmas. Fortunately, I don't think my care suffered for being holiday time but I would never purposefully plan it that way. There was a parade of different nurses. Didn't see the same ones all the time. It was okay but would have been more comfortable to have the opportunity to be treated by the same people.

ALSO......at all costs, avoid elective OHS/any elective hospitalizations the first weeks of July. That is when all new Interns begin at teaching hospitals. Very chaotic time period with inexperienced people doing procedures for the very first time.

[Gnusgal]

I just thought I'd put my two cents in here... Keep in mind, I'm the patient, so I DO have some perspective on this. And my husband HAS on occasion stayed with me 24/7. However, he has not done so in an effort to "catch" the hospital staff making a mistake. It was mostly for convenience, and a desire to be near me...

That being said, he is now a nurse. And this gives us a new perspective about patients' families. It is typically the family that questions his every move that gets on his nerves, making it so he doesn't want to go into the room if he can help it. He feels THIS is more likely to result in inadequate care than if the family is pleasant to interact with.

I want to ask you how many of you would feel comfortable with someone standing over your shoulder while YOU work and doubting your ability to do your job. I'm doubtful you would like it much at all, and your work might suffer for it.

I understand the desire to "protect" your family members from any harm or potential mistakes. But attitude can go a LONG way. Do not go into the situation ASSUMING that they will make a mistake or have anything other than your loved one's best interest at heart. I'm not saying there aren't bad nurses out there... Just that you can't jump to the conclusion that just because you had one bad experience means you will be certain to have another.

Nancy, I completely agree that the things that happened to Joe are inexcusable. I'm not saying you don't have every right to be upset and feel a need to advocate for others to stay with their family members. However, I do think that this thread makes it sound as if the only way you'll make it out of a hospital alive is if a family member stands gaurd. I think you'll be making a mistake if you go into a hospital with this attitude and create friction where there doesn't need to be.

Please, all I'm asking is that you give the hosptial staff some respect that they know how to do their job.

(Please don't flame me for my comments. I'm just trying to point out another perspective.)

[geebee]

Niki,

I understand what you are saying but I don't really think the majority of the problems faced are due to poor nursing but rather the nurses having too much to do to give the attention that is sometimes needed.

I know with me, Chris (my SO) just wanted to be with me. Due to that, he was able to let the nurses know when I had problems rather than wait until a regular check. He is by no means a confrontational person and only assisted rather than hassled. In fact, the nurses indicated it was great to have him around.

Perhaps some folks do assume bad care but I don't think that is the feeling of the majority. We all know that 24/7 care is just not possible in hospitals today.

[Gnusgal]

Gina,
I agree that nurses are overworked and it is nice to have someone around for the little things. However, the way that some of these posts read (and that could be me misinterpreting) there are people here who believe that the nurses need to be checked at every turn. From the way you describe Chris, I doubt he felt that need. The same goes for my husband when he stays with me. He helps me get to the bathroom or get a drink of water so I don't have to wait for a nurse, but he doesn't think I'll receive inadequate care if he is not there. Does that make sense?

[Granbonny]

Like Gina just posted..my daughter just wanted to be with me at night..:) she had never seen her Mama sick in 33 years....St. Joseph's step down unit for VR and bypass patients is a large Circle unit..with the nurses' staion in the middle.Patient doors are wide open..so they could walk around and see all of us..I am thinking there couldn't have been more than 10 rooms.so..there was plenty of help..but daughter was there to help me in the mornings..with hair/ect.breakfast and most important walking me around the unit..as much as I didn't want to do it.:p she let Daddy sleep in motel room and she would go back and rest and let him stay just for company during the day.......I remember one night..a nurse came in just to chat with daughter. Everything was quiet on the floor..and she said..how nice it was to have someone to talk to..(family)..I am sure there was another nurse at the station..........Bonnie

[geebee]

Absolutely, Niki. Chris is the same as your husband. He gets me water, snacks and helps with repositioning ,etc. - all the things that take away from the time the nurses have to provide essential medical care.

I have been in and out of hospitals (as an adult with good memory) for almost 30 years. The available care has changed drastically during that time. There used to be many more volunteers and LPNs and nurses aides that did the "little things" that can be really important to the comfort and good recovery of the patient. The hospitals today are sadly understaffed and that is not the fault of the nurses. They have to make decisions constantly on what action is more important to a patient's survival.

We have to be responsible for our own care be it in or out of hospitals. I never feel that when Chris is there, I get less care. In fact, having him there can actually provide more care since he would know when the situation might change and require the intervention of the medical staff.

That being said, some of the things that happened to Joe and other patients in the ICU where the care is more one-on-one, are outrageous. A patient being left on the floor for some time in an ICU environment makes me furious.

[annb]

I know that we received amazing care at St Francis and all of the nurses were superb including the one who was there when Byron started spiking a fever. She just was not as familiar with him as some of the other nurses and the floor was very busy that day. My intent was not to rag on the nurses but to emphasize how quickly things can go south and if a family member is present it will be caught sooner. I have great respect for nurses and the techs that work with them. I changed Byron's sheets everyday so they would have time to help the "sicker" people. I brought him all of his ice and water and did whatever I could to relieve the tremendous burden that the hospital staff was under. St Francis is a very busy cardiac hospital and although very well staffed falls victim to short staff like everyone else on occasion. We had tremendous care there. We could not have asked for better. I just wanted people to know that even when all appears well hiccups occur quickly.

Thanks
Ann

[Lynlw]

When I said I 'caught" things that could have been problems, I certainly didn't mean yeah i got them doing something wrong, I meant I stopped them or tried to before they did something or didn't do something.. I don't think anyone here goes into a hospital stay w/ a chip in their shoulder rady to jump on any little thing. and really hope the stay goes well. and our relatives are taken proper care of, but yes you can be at the bedside and be very nice and helpful to the staff.and do small things to help, for the most part Justin's stays were like that.and the good nurses seem to like haveing family there to watch the patient, help with the patient and don't mind answerring questions about what they are doing or hanging, actually the good ones, usually tell you before they hang it. BUT there have also been awful stays with terrible care at leading centers. Justin last stay was unforgivable and as he told his PC, the vet treats our dogs better. we had to track down his meds an hour after he should have got them and it only went down hill from there. Did I go in to that hospital stay hoping that it would be like that, God no, but I hve wonderred how he would have made out IF his dad or I weren't with him 24 hours a day, IT was so bad, if he wasn't being DXD that day we were going to transfer him to a different hospital that was always properly staffed and he always got good care.
It was so bad I wrote letters to the floor Charge nurse, the CCU nurse, the head of cardiology and the pres of CHOP because of some of the things they did to Justin, kick him out of CCU, but not have a roon for him for hours 24 hours post op heart surgery, so kept him in a treatment room , BUT he could have his meds, because he didn't have a room so according to the computer he didn't exist. THAT one yep, I took care of. Oh my mom was a nurse and i worked in hospitals for 18 years as a lab tech.

[Susan BAV]

Niki - I think you make an excellent point.

Nothing against nurses specifically; I've seen many good ones -- capable and caring and eager to do their work with efficiency and cheer -- but I've seen too many of another kind also -- perhaps overworked or undervalued also.

Regarding being with family at a hospital - we've been there for reasons of moral support and for basic needs that require less buzzes (on the patient call buttons) for the nurses; and we have run and fetched nurses when they couldn't/wouldn't answer a buzz for whatever necessary reason. And I kept mental track of what med was given, when and why, in the case of my son's critical care issue.

But when my dad was being treated for his final illness in a VA hospital, he was put in a small ward way down at the end of a long empty and forgotten hallway. It was like what I would think of as a death ward and you hardly ever saw a nurse when you needed one. His roommates quickly disappeared from that dreary room to ICU and then they were gone. It was depressing for everyone.

My dad, who was still handsome and charming, was probably the most pleasant patient I could ever imagine; but sometimes he couldn't get a nurse or a pain pill or a suppository or anything for hours, with or without buzzing for a nurse. My mom and I were as pleasant as we could reasonably be but the man was in excruciating pain and frequently had to wait inexcusable extra hours for simple regularly scheduled pain meds or any simple or essential care. The nurses always had an excuse and there was no doubt some resented my mom and I being there and we occasionally had to be very direct in pursuing some care for him.

He had a feeding tube in his intestine and just attaching him to the machine and putting the liquid in the machine was a 12-14 hour repetitious all night event, which the nurses were supposed to do when he was in the hospital but we did when we took him home. We also took him from his hospital room by car to his daily radiation at another facility and his dual and simultaneous chemo clinics within the VA hospital and we took him home on weekends; I don't know how he would have gotten to any of those without our gentle care; but I'm sure it would have been even rougher on him.

His experience was probably not so much of a nursing issue as an administration issue. But it was a good example of how the patient can need a loving advocate.

[Nancy]

I think we are all right, depending on what we have witnessed.

Perhaps this all has to do with the degree of care that a patient needs. The more needy and ill a patient is, the more obvious the lack of good care. Those who can fend for themselves in even a minimal way can do without close monitoring. And their families can fill in the voids. But if things turn quickly from a good situation to another situation, then the cracks in the system start to show up and the patient is in grave danger of falling into one of those cracks.

As I said before, not every nurse was bad. Most were wonderful. But as Joe went into a more critical care situation, it just became horrendous, and that is what Susan's post says.

People who are getting paid to take care of ill people have an obligation to provide more than just "ordinary care". They have responsibilities that go beyond the norm, like it or not. That is the nature of what they have chosen to do.

I do not EVER again want to listen for 20 minutes to a nurse in the ICU gossip about her female patient to another nurse. I do not EVER again want to see 5 or 6 nurses standing around at the desk talking about a party when patient's buzzers were going off, and they did not respond. I do not EVER want to hear about an immobile patient who has to go to the bathroom being ignored for an hour. I heard one nurse tell a patient, as she was walking past the door, "I'm busy right now, just go in the bed, we'll take care of it later". This was a nice looking older woman she was speaking to, and the woman was devastated.

If this were just things that happened at one institution, I would say, never go there, problem solved. Unfortunately, this happened at more than one institution.

It is rather disgraceful.

And no, I wasn't always this much of an advocate. I started out trusting and being very nice and sweet. But layer after layer of neglect wore away my nice smile.

Those of you who have had a wonderful and caring experience are lucky, and I am happy for you.

I also applaud the good nurses and doctors who try their best and really care. I am sure you are in the majority.

My biggest hope is that managers in a hospital setting will read these posts and evaluate their own in house problems and try to correct them. Better supervision is needed and some of you doctors should be speaking up about what you know as well.

[briansmom]

Another perspective-
My son has received above and beyond care at Sharp Memorial. He is quite spoiled because he is the only 16 yr old heart patient they have ever had. He was also nearly dead when they got him and he walked out on his own 2 weeks later.
One of Brian's issues when he woke up was that his foot was numb (maybe from the CABG, maybe from one of the bypass machines they had to put him on) and as the foot started to wake up he wanted it rubbed - 24 hrs a day! The nurse could not possibly do that (and he was her only patient). Also, helping take care of him gave me a sense of purpose. I have control issues ;-) and it allows me to continue some delusion of control when he is in the hospital. When he was moved up to the step down ward I told his nurse that I was happy to get him his water, change his bed and do all the "little things" so that she could do "the things that she went to school to do". They were quite pleased with this attitude. I think all nurses are overworked because most care so much and they want to be able to make the patient feel better. If I can free up a little time for that, then I am happy to do so. It is better than sitting there (like I am right now again) and staring at my computer screen or TV.

[Gnusgal]

I completely agree that it is wonderful if family can stay with the patient and take some of the burden off of the nurse if possible. I'm not at all saying to leave them alone and let the nurse do it all. I simply wanted to point out to those who have not been in the hospital yet that they don't need to go in expecting the nurses to be neglectful, give wrong meds, etc. My husband actually has commented that there are some families he likes having around. The problem that he sometimes sees are those who question everything in an accusing manner, write down everything he does like they are looking for a reason to sue, and arguing with him about the orders he's been given by the doctor. Again, it's all about the attitude.

I also understand, Nancy, that you've had some horrible (and hopefully rare) experiences. I do not blame you at all for feeling you had to be on gaurd at all times. But I wanted to make sure new people were aware that this isn't always the case and if they don't have a way to have someone with them 24/7, they don't need to be afraid that they won't go home.