Ask for a cot.

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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
 
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.
 
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
 
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.
 
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!
 
Yes a Cot is Great!

Yes a Cot is Great!

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
 
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.
 
geebee said:
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.
 
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.
 
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.
 
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
 
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.
 
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.
 
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
 
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.
 
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
 
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.
 
Hi Ann

Hi Ann

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
 
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
 
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
 
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