What a nurse should consider/remember while aiding

[Jessica's Mom]

What a nurse should consider/remember while aiding the family to care for a tracheostomy pt. which gets to the point of my email. --- First, the nurse should remember that this is not just a tracheostomy pt. It is a child, a baby, a human being that needs to be loved, even more so, then your non-tracheostomy pt. This child or baby needs to play and be interacted with just like a "normal" child or baby. Do not refer to my baby as a tracheostomy pt. Her name is Jessica. You are in my home and yes, I do know way more about children with trach's then you do, treat me that way, and unless you have had a child with a trach for subglottic stenosis, do not question what I say or do. I deserve your respect and if you don't like the way I do something, then tough. This is my baby, not yours.

What are some of the things you feel the nurse should be aware of when working as part of the health care team for the tracheostomy patient? --- I am sorry I had very bad experiences with nurses. I am a part of the health care team, you, the nurses are not. You are a trained baby sitter that is comfortable putting a trach in, I hope. In my home with my baby, life will never be as "exciting" as a hospital, so don't try and make it that way. And I am sorry to say, but I don't think anything could have helped with me not wanting the nurses here. I did not like them in my home at all, but here are some things I really hated. Don't talk to me so much. Don't tell my other children what to do. Don't comment on my home. Don't comment on fights I have with my husband. Don't comment anything because I hated having you here and you are not part of my family and you never will be. Don't bring me your old crap, I am not a charity case. Don't eat my food. Don't comment on how I treat my dogs. Don't comment on my bad habits. You are not my friend. You are here to help me with my baby because life sucks and I can't do it myself and I already feel like a failure, so everytime I talk to you, I am reminded that I can not take care of my baby myself and I need you ---YUCK!!!! Again I am sorry, I hated nursing, I had it from 12-11-02 to 12-22-03 and even though some nights and days I am so......... tired, I love not having strangers in my home!!!!!!!!!!!!!!!!!!!! I hope my comments helped a little.
________
AVANDIA HEART ATTACK

[sandra]

Ruth,
Thanks for asking us. I think if you do a search on nurses on this board you will find a lot of information, especially about home health care.

I think the most important thing to remember when caring for a trach patient is to be respectful of the family. We have cared for this child by ourselves and know everything there is to know about this child. Even in the hospital, I expect the nurses and doctors to include me and to listen to me. Brian's care should be done the way I want it done, so that it is consistant with what we do at home.

Overall, I have had pretty good experiences with nurses. Some are better at home health care than others. The best ones are very respectful that this is my home and know that I have the last word about how Brian is cared for.

Ruth
I hope I can help you. As a home health nurse the first thing I learned is you need to remember this child is not the disease/disorder you are treating. The parents can tell you more about their child than you can ever learn. You are not the parent and cannot attempt to place yourself in that position. Now in saying that you should also know you are helping the entire family. As the nurse you may come to find you are also working as councelor, advocate, etc. Home care and hospital care are VERY different. This is a home and it can feel like you ar an invading force. Parents all have ways that like to take care of their child, THEIR CHILD, this can cause conflict because you are trained to do it another. I can tell you this, if it is not dangerous to the child or nurse, do it the family's way. I try not to dress like a nurse in that I don't wear scrubs or lab coats with my stethescope around my neck to the child's home. These children spend a lot of their time in hospitals, their home needs to be a safe place. They need to know you are not there to poke and prod and parade people in and out to gawk at them. The fine line is they also need to know you are the nurse first, not the friend.

I am NOT a glorified BABYSITTER. I spent four years at a very respected college in an acclaimed nursing program where I received honors. Three years before that learning child development and education. I am a damn good nurse. I love home care. I love my "children". I did not go into home care as I hear people imply because I couldn't make it in a hospital. I chose to go into home care because I was prepared to be the nurse, respiratory therapist, mechanic, councelor, advocate, all the things separate at the hospital all roled up into little old me. I thrive. My "children" thrive. I wish I could tell you some of my stories, but I would never betray my "families" confidences. These families have it tough and most are absolutely amazing, I have learned twice as much from them as I did in school. Be open, be available and you will be amazed at what you learn.
Kristina
PS- don't interfere with the family's personal life unless it directly involves to safety of the child and then be sensitive. You can't possibly ever know what its like to be that family. And remember they don't need your baggage too!

Good Luck in nursing and on your project!

[cbissell]

I think the most important thing to keep in mind is that there is no recipe in home care nursing that will work for all families. Every family and every child is unique and they have different needs and expectations. You'll find two extremes, families who want to keep a professional distance and those that will make you feel like part of the family; plus everything in-between. Some are angry about even needing help, while others are happy to have your help. I think the nurse and family are both part of the child's team along with doctors, therapists, case manages and everyone else involved in the child's care. But it is also true that home nursing is very different from hospital nursing. I would suggest that you do things the way the particular family wants things done, as long as it's safe for the child.

[Momi2AntnJadyn]

Just in response to a couple of these posts... I feel kind of differently about the whole nurse/friend issue LOL. More than "just a glorified babysitter", yes, but I really do need to feel that "friendship" with a nurse to feel comfortable with them in my home. I absolutely love Jadyn's Friday night nurse, who drinks coffee with me every night when she comes in, and talks with me in the morning before she leaves about whatever might be going on in our lives. I love Jadyn's nurse/case mgr. also who I could talk for hours and hours to. Then there are a few other nurses we have had that were good nurses, but that I just didn't click with... not like I didn't want them to work here, but I just looked a lot more forward to the times when the nurses we were "friendly" with were coming in LOL. I used to feel like I had to get out of the room, the house, whatever when they were here, but the ones we get along well with, I feel completely comfortable going in to play with Jadyn, suctioning her without worrying that they are going to look at me funny if they are doing something else at the time, picking her up, whatever... I need them here to HELP, but I need to still feel like Jadyn is MINE.

With that said, in response to the original question, I feel like the nurse needs to remember (like a lot of other people have pointed out) that this is a HOME, and not a HOSPITAL. It is not the sterile environment of a hospital.

I like a nurse that is willing to do the same kinds of things with Jadyn that I would do if I were caring for her at the time. Someone that takes care of all the medical things that at times overwhelm me, but that treats her just like any other child at the same time. Holds her, plays with her, takes her for walks, etc.

Someone that doesn't make decisions for my daughter without first consulting me. Like someone said in another post, altering medications. Calling the doctor and getting orders without checking with me first. DON'T rearrange my stuff how you think it might work better LOL, that annoys me.

I would say there aren't general "rules" to follow, just do what it seems the individual family is the most comfortable with. Some people will feel most comfortable looking at you on a more professional level, and some will feel more comfortable if you seem like you can relate to them as a friend. Some people won't mind if you watch TV while you're there, and it will annoy others... stuff like that.

[Ann]

I have had nursing for 5 plus years and our nurses have become like family. Â*I need these nurses in my life, I need to know they care about my child, my family, and me. Â*Clearly, there are families who don't want nurses in their home and there are others who can't live without them. Â*In my case, my son will always need nursing, so I have no choice but to make it work. Â*That said, I've never had a problem making it work. Â*It's not to say I've never asked a nurse not to come back. Â*But, it's always been someone they send to fill an extra shift here or there. Â*My primary nurses have ALWAYS been excellent. Â*

I believe not only does the nurse have to work for the family, the family has to work for the nurse. If you are not comfortable with the family for whatever reason, then I think it's best to not stay, especially if it's going to be a long term commitment.

I agree that you have to respect that the parents know more about their child than you do, the doctors do and anyone else does. Â*We have learned the hard way that we must become the experts on our children. Â*Find out how the parents want to do things and respect and honor their opinions. Also, never call a doctor or other health care professional regarding the child. That is the parents' job and no one elses.

I respect your education and your knowledge. Â*I do not see you as a glorified babysitter. Rather, you are the person who nurtures my child, plays with my child, loves my child and keeps my child safe and alive while I am away. Â*You are the one who has to know how to recognize an emergency and know how to respond. Â*You have to know how to change out a trach in a second, bag a child, adjust vent settings and know when to call me at work and tell me that you have concerns about how my child's day has been or that I need to come home asap. Â*You are also his teacher, his therapist, his friend and his protector. Â*

I could never do it without you. Good luck and I hope you are welcomed in the arms of a family that needs you, respects you and comes to love you as much as I do Jack's nurses.


Ann

Upon re-reading my previous post I feel I need to apologize for coming on so strong (and my terrible spelling/grammar! Alas, I am a great disappointment to my teachers and mom!).
I should not have implied a nurse needs to be impersonal. I would count several of my parents as friends and have a great affection for all my families. I am grateful to know them and they have enriched my life for the experience of allowing me into a small part of their family.

Kristina

[Jessica's Mom]

I am sorry if I upset some of you with my post of a nurse just being a trained babysitter, this is why I never post responses, I have alot of different opinions on certain things then you guys and I don't like to upset the only people in the world that can understand life with a trached child.

Anyway, I had over 30 nurses in my home and the ones I did chose to trust, left or screwed me just when I needed them the most. I wish I could have found the "perfect" person to help me with Jessica, but all I found was a bunch of women that really didn't care about my baby, they were just working a job, doing doctors orders. I have lots of storys from the nurse that was causing Jessica to throw up, the unreliable one that never would show up, actually there were about 6 of these. The best nurse I had left me because I wanted her to work from 11ato7p and she wanted to work 8ato4p. I didn't want her at home during these times. The one that I really liked had to bring her 10 year old kid with her everynight she worked. Then the day one I really liked left because she felt like a glorified baby sitter and liked the excitment in the hospital better. What about the one that woke us up because my daughter was dead? She didn't even know the trach was out, let alone how to put a trach in!!!!!!!!! But I guess the best was the jerk that I did trust, but she was taking advantage of me so bad I had to spend $600.00 on a lawyer to save my but from going to jail because she was defrauding the insurance company. Not mention she would take sleeping pills at night while watching my child, so I would wind up taking care of Jessica anyway.

Maybe if I was lucky enough to find good nurses like you guys, maybe I would feel alot differently, but I didn't so I DO feel alot differently then alot of you, and this is just my opinion. Just like you guys have your own opinions and opinions are never wrong.

So again, I am sorry by my comment of "You are a trained baby sitter".

PS - Nurse Kris, my husband even read your post, he never reads these things, and like me, we feel that you just might be that 1 in a million nurse and had we found someone like you we might feel differently. Keep up the good work and I am happy for the families of the children you take care of.
________
Hemp Marijuana

[Ann]

Denise - we all understand where you are coming from. We all have different experiences and different opinions and should feel free to post them. I'm just sorry that you had such crappy experiences with nurses.

Hugs,
Ann

[Shari]

Ruth-
As you can see, you touched a raw nerve with a lot of us! All kinds of fun! I am an RN (almost done with my master's as a NP - yea!), a student, an adjunct peds nursing instructor, and the Mom of a child that was vented and trached for 3 years. This is such a strange situation to be in - having to depend on people to be able to care for your own child. It made me feel worthless sometimes - that I wasn't good enough or strong enough to do this on my own and I hated having to have strangers help me. I couldn't hate my child - this wasn't his fault. I couldn't be mad at my husband - we were working together. So, sometimes, my resentment was directed towards the nurses. Expecially when I had some that were SO BAD!!! Who can blame me for being so angry with the nurse who told me one morning that she was going to take a month off to check herself into drug rehab, but she would expect to have her job back next month! I did have some wonderful ones - and I'll love and appreciate them forever. Looking back, a little more rationally - and with a bit more sleep - I see that most of my emotion was actually grief. I was grieving for the child that never was - that was whole and healthy and perfect - I was grieving for the life that I would never have.

When your caring for a patient in a hospital, you have a room that you can leave - a break room to take a rest, space to walk around and take a phone call, etc. If your having family problems, your patients never know - they seldom even remember your name. In the home, it's easy to get too comfortable - to balance being a caring, loving person with being professinal is tough! Your breaks are taken in the home, your private phone calls are taken in the home, etc. All of the nurses, even the good ones, took advantage of my vulnerable position - they knew I needed them, so they got lazy, they didn't do their work, they fudged on their hours, and told me way too many of their problems.

So - what can you do to better care for a trached child? Most of it is simple: be a professional; keep the focus on the child and the family, not on yourself and your needs; always protect the child's and families privacy and confidentiality; remember that medical/nursing care is a paid service and that the family is the customer; although you are bound to follow an order, the family is not - they can refuse anything (just chart it and report conserns to your supervisor); know what your doing, but be ready to learn - you will learn something every day.

But most of all, LISTEN! Pediatrics is about listening - to the signals that the child gives you, to the parent, to your gut, to your environment. The child and the family will tell you what they need... they may not know the words or be able to explain it, but if you listen with your gut, you will hear them tell you what they need. Nursing is not about orders and diagnosing - that's medicine - nursing is about nurturing. Most of these families, including myself, are/were in the middle of a nightmare that they could have never imaginged - nurture them, allow them to grieve, allow them some privacy, respect them, teach them without belittling them, build in yourself a kind and gentle spirit - isn't that what Nursing is really all about? A "paid babysitter" can follow orders - who needs an education for that? Real nursing is about the stuff that's often hard to explain - it's a craft that's more art than science sometimes - these parents can hire someone off the street and teach them the the skills - it's the Art that these families need.

-Shari