Nurses are what make the world go 'round in our home.
But, if you really want to know where I'm coming from with the title, it's from the song, "Gangstas make the world go round."
That song has been permanently stuck in my head since 7th grade.
Darn you Westside Connection.
Also, don't ask me why a bunch of us 7th graders were listening to that music...where were our parents? =)
I'm not sure where to begin with this post. There is just so much. Which is why I better stop running off on random tangents, and I best get on with it...
I guess I'll start with
Step 1: Interviewing Nurses
For this, I'm just going to include a great handout that The Children's Recovery Center gave us. It gives you questions to ask, but also covers setting expectations, boundaries, and having a means of communication.
"When children with special medical needs come home from the hospital, they don’t come alone. In addition to equipment and supplies, your kid’s special needs typically require the services of a variety of medical staff, including nurses who may be coming and going, or even in the home 24 hours a day, seven days a week. That may take some getting used to. Here are some tips from CRC staff and parents on how to live in harmony.
Initial interview – is my infant safe with this nurse?
1.How many years of pediatric experience? How long have you been with your home nursing company?
2.How many years of infant trach experience? How many routine trach changes have you performed on an infant? Ever did an emergency trach change on an infant?. Describe the event and how you responded. What would you do if the trach “fell out.”?
3.How many years of infant vent experience (if appropriate)?
4.Have you ever performed CPR on an infant or child? Set expectations
Make sure nurses understand what you expect of them.
Decide on boundaries early on and keep communicating (things like where nurses should park their vehicles, phone use while working?, watching TV okay? can they use the refrigerator? or should they bring lunch in a cooler?, can they use kitchen appliances?, or a separate bathroom). Are you okay if they want to take a smoking break? If something isn’t working, make changes so the family can maintain some level of privacy.
Communication
Try using a “Communications Book.” You and the nurses write comments in the notebook throughout the day and are able to communicate through notes left in the book. As nurses change shifts, they read through the book to see how the child is doing that day or if anything has changed since they were last in the home. This keeps everybody on the same page. Parents can also use the book to communicate an otherwise uncomfortable situation (for example, if one nurse is bad at cleaning up, the parent can write a note asking all nurses to please be better about cleaning up after themselves. That way, the parent doesn’t have to call out a specific person, but rather lets all nurses know they need to be careful and conscientious when they are in someone else’s home).
Make a List
Give the nurses a list of “need to know” situations, such if you wished to be awakened for fever or other signs or symptoms of an impending illness during the night or when to be called during the day. Don’t let things fester Address any concerns before they jeopardize your relationship. This is where a communications book comes in very handy, but if you are uncomfortable directly or indirectly confronting a nurse over a certain issue, talk to her/his supervisor. Understand that personalities may clash. You may be able to overlook that, but if there is a nurse in your home you know will not work with your family, ask the nursing agency for a replacement.
Help the nurses help you Don’t expect the nurses to know everything about your child. You are the expert; orient them as much as you can and let them be helpful to you."
Justin and I always start off asking about a Nurse's background/experience. However, many times, we've had Nurses with no experience with trach or ventilator, and that's okay with us as long as we see a willingness to learn. I think we also have that 6th sense by now to see how quickly a Nurse is able to pick things up. Because we move fast with Moriah's care, and there is high information, we need Nurses who are able to learn and process quickly and communicate effectively. We convey our expectations of wanting people who work hard and have a great attitude whenever they come into our home. There have been times when a Nurse comes to our home, and we know pretty quickly it won't work out. This is okay, too. This is our home, and we have to feel comfortable with the people in it, and most importantly, have assurance that our child is in capable hands. Equally important is making a Nurse feel comfortable. They are entering into your space, and your territory, and you don't want them to feel like they have to walk on eggshells (imagine if you felt that way at your work). It might take time, but eventually, there is a happy medium.
Step 2: Getting to Know My Child/Nurse Training
We keep a binder in the house. Looks like this.
***Checklist During Shifts. I ask that our Nurses visibly check this one off. There are so many little tasks that can easily be forgotten, so we came up with this checklist. Unfortunately with home care, some nurses can be a little too relaxed, and we would feel like we would end up doing all the work after they left. This has been a great tool to make sure everything actually gets done. Yay!
If you want to take it to the next level with these lists and references, Shannon told me that one family she worked for wrote detailed descriptions of how they liked everything, and took pictures of it as well. Now that is legit. It would really help when training a Nurse to ensure things get done exactly the way you like it.
We have home nursing around the clock, Monday through Friday. We have been extremely blessed with reliable, hardworking, loving Nurses, and it has helped to take the pressure off of Justin and I to care for Moriah completely on our own. We truly couldn't be doing this without the support of our Nurses. You can see the detail that goes into the care (and this is not even all of it!). Our Nurses make it possible for us to be home from the hospital with Moriah.
Here is a link to a resource on Aaron's Tracheostomy page about Home Nursing. It discusses the challenges that exist for families with home nursing.
Also, this essay "Welcome to My Home...I Think" by Sharon Burleson kinda sums it up (I can relate to this person!)
While it is an adjustment to have someone in your home all the time, the up side is there is never a dull moment, and you always have someone to talk to =)
The down side is that you can't dance around in your underwear, singing at the top of your lungs anymore.
But in all honesty, it becomes your new normal.
We are really happy with our team, and love how everyone works together to make sure Moriah receives the best care. Yes, mistakes happen. No one is going to be perfect - we sure as heck aren't as her parents! But, we know our Nurse's hearts, and know they work incredibly hard, and would never want anything to happen to Moriah. This is truly all we can ask for.
As equally important, you have to feel comfortable and confident with your Nurses. I would be less forgiving of mistakes if I felt like a Nurse wasn't doing her job, and wasn't trying very hard. Not okay.
Because we are huge believers in family-centered care, I'm including a couple more resources that I found through Aaron's Tracheostomy site. One is written by a blog friend, Ann!
Family Centered Care
Dear Future Physicians (by Ann Schrooten, Jack's Mommy)
We always welcome comments about people's experiences, advice, suggestions, etc. We just ask that everyone be respectful. Doctors, Nurses, and RT's have some of the hardest jobs out there, and we strive to let them know how much we, families, appreciate them.
Thanks so much, and please don't hesitate to ask me any questions. I will do my best to answer.
Justin and I always start off asking about a Nurse's background/experience. However, many times, we've had Nurses with no experience with trach or ventilator, and that's okay with us as long as we see a willingness to learn. I think we also have that 6th sense by now to see how quickly a Nurse is able to pick things up. Because we move fast with Moriah's care, and there is high information, we need Nurses who are able to learn and process quickly and communicate effectively. We convey our expectations of wanting people who work hard and have a great attitude whenever they come into our home. There have been times when a Nurse comes to our home, and we know pretty quickly it won't work out. This is okay, too. This is our home, and we have to feel comfortable with the people in it, and most importantly, have assurance that our child is in capable hands. Equally important is making a Nurse feel comfortable. They are entering into your space, and your territory, and you don't want them to feel like they have to walk on eggshells (imagine if you felt that way at your work). It might take time, but eventually, there is a happy medium.
Step 2: Getting to Know My Child/Nurse Training
We keep a binder in the house. Looks like this.
Looking at this picture makes me want to spruce it up with some sparkles and stickers.
In this binder, we include Moriah's history, general information about CHARGE, Likes/Dislikes, etc.
In here, we keep descriptions and lists of things that need to be done/expectations we have.
We try not to throw everything at a Nurse at once. We first have them do the basics i.e. meds, nebs, feeds, and basic equipment care. Then, we slowly introduce more once we see that they are more comfortable, and that they are getting the hang of things. The ultimate goal is for our Nurses to be able to take care of Moriah without Justin or I being there (however, this is not always the case, and we have found that only a few have been able to handle Moriah on their own).
Step 3: List-o-mania!!!
Okay, here is where I get a little crazy with the lists. But, trust me, it helps so that I don't have to repeat myself all the time during shifts, when we are training a new Nurse, and also when we are sleep deprived and can't even remember what day it is. Lists help familiarize new people, and serve as reminders of what we have to do since there are so many aspects of M's care. Also, you can ask your Nurses to help you create these lists. Shannon helped me with most of these!
I'm going to include a couple of examples of what we do. Some are old and redundant. But, these are just to give an idea of what we have found helpful around here. Again, this is only what we do here. It will be different for everyone...
*A General Outline of What We Like
*Equipment Change List (our PM Nurse is in charge of this)
*Description of Shifts. We asked our Nurses to write up descriptions of their shifts. These are intended to help another Nurse who might be covering to know what to do, or to help train a new Nurse.
Description of PM Shift
Description of Noc Shift
*Medication Schedule
So, I know the Nurses have their MARs. But have you looked at those things? They're confusing. We (as in Shannon) came up with this list to help organize all the meds/feeds according to their times. It's so straightforward. The first week a Nurse trains with us, I ask to be shown all the meds to ensure they're drawn up correctly. If a Nurse has trouble with drawing up meds, I ask that she double checks each med with this list.
Justin refers to this list as well (I have them memorized. Point ;-))
P.S. I decided to blur the meds.
If you want to take it to the next level with these lists and references, Shannon told me that one family she worked for wrote detailed descriptions of how they liked everything, and took pictures of it as well. Now that is legit. It would really help when training a Nurse to ensure things get done exactly the way you like it.
Step 4: Communcation Board
In a previous 101 post about Home Ventilator Set Up, I included this picture of our white boards. We use these to communicate from shift to shift. One board is for each Nurse to write important details that occurred during their shift, and one is to write down any changes/updates to Moriah's plan of care. Below, I include the Shift Checklist, Doctor/Pharmacy/Medical Supply Contact Info, and pictures of Moriah's therapy exercises from preschool. 
Remember, the Nurses are there to help you! Delegate the responsibilities of taking care of your child so that you can have some time to do whatever you need to do! Rest, go to therapy (not joking, and so serious that this can be an aspect that is totally ignored by some families in our situation), clean, run errands, work, etc.
We have home nursing around the clock, Monday through Friday. We have been extremely blessed with reliable, hardworking, loving Nurses, and it has helped to take the pressure off of Justin and I to care for Moriah completely on our own. We truly couldn't be doing this without the support of our Nurses. You can see the detail that goes into the care (and this is not even all of it!). Our Nurses make it possible for us to be home from the hospital with Moriah.
Here is a link to a resource on Aaron's Tracheostomy page about Home Nursing. It discusses the challenges that exist for families with home nursing.
Also, this essay "Welcome to My Home...I Think" by Sharon Burleson kinda sums it up (I can relate to this person!)
While it is an adjustment to have someone in your home all the time, the up side is there is never a dull moment, and you always have someone to talk to =)
The down side is that you can't dance around in your underwear, singing at the top of your lungs anymore.
But in all honesty, it becomes your new normal.
We are really happy with our team, and love how everyone works together to make sure Moriah receives the best care. Yes, mistakes happen. No one is going to be perfect - we sure as heck aren't as her parents! But, we know our Nurse's hearts, and know they work incredibly hard, and would never want anything to happen to Moriah. This is truly all we can ask for.
As equally important, you have to feel comfortable and confident with your Nurses. I would be less forgiving of mistakes if I felt like a Nurse wasn't doing her job, and wasn't trying very hard. Not okay.
Because we are huge believers in family-centered care, I'm including a couple more resources that I found through Aaron's Tracheostomy site. One is written by a blog friend, Ann!
Family Centered Care
Dear Future Physicians (by Ann Schrooten, Jack's Mommy)
We always welcome comments about people's experiences, advice, suggestions, etc. We just ask that everyone be respectful. Doctors, Nurses, and RT's have some of the hardest jobs out there, and we strive to let them know how much we, families, appreciate them.
Thanks so much, and please don't hesitate to ask me any questions. I will do my best to answer.
