We don’t get night nursing every night.
And it isn’t unusual for a night nurse not to show.
Or to say she came by and knocked and knocked and even left a message on the phone.
Except nobody heard her knock nor the phone ring and no messages were ever found.
Last night is an excellent example of why we are working to get a twin sized bed in Parker’s safe room so that Reed and I can look at canceling the night nursing all together.
I woke up at 6:00 a.m. to take over after last night’s nurse, who has been here a few times before. As usual I asked about Parker’s night, and especially about his heart rate as we’ve had some concerns over the last few weeks.
The nurse just kinda shrugged and said that Parker’s heart rate had been anywhere between the 60’s-the high 80’s. She then picked up her report and left.
About 10 minutes later Parker’s sat monitor alarmed letting me know that his oxygen levels had fallen below 85. I spent an hour trying to bring them up. Including suctioning, cranking up the oxygen, checking and changing out probes, changing Parker’s position, doing inhalation treatments to try to break up any potential gunk in his lungs, etc.
Between Parker’s low O2 levels and his now in the mid-1oo’s heart rate while sleeping, I was worried enough to call Reed at work.
A few minutes into our conversation I looked over to Parker’s oxygen concentrator and noticed that the vent tubing WASN’T HOOKED UP PROPERLY. When switching Parker from his trach mask to the vent, this night nurse didn’t switch the tubing on the oxygen concentrator.
Which means that my kid spent the night on the vent with NO OXYGEN.
Have I ever mentioned that Parker requires extra oxygen 24/7 to, you know, stay alive?
Or that even MY KIDS know to change over the tubing when going from g-beck and nose to trach nose or trach nose to vent?
I’ve spent some time going over this nurse’s notes from last night. A few times a night she is required to record where Parker’s heart rate and oxygen sats are.
It is very important that Parker’s O2 levels stay at 95 or above. This is a treatment for Pulmonary Hypertension. Both Reed and I have reminded this nurse of this many times.
Well, whadda ya know. Her notes say that each time she charted Parker’s heart rate was 92.
And she did nothing about it.
She should have increased Parker’s 02 on Parker’s concentrator. That would have brought his sats up to the necessary 95.
By walking over to the concentrator to turn up Parker’s O2 she most likely would have noticed that she hadn’t changed out the tubing on the concentrator properly.
To say that Parker’s heart rate has been erratic all day long today is an understatement. I’m keeping my fingers crossed that having him on increased O2 will bring him back to his baseline.
And this isn’t the first time I’ve had issues with nurses from this company.
There was the day I walked in to catch a nurse and her husband getting a bit friendly (gross) in Parker’s room. While I was at a doctor’s appointment, this nurse had invited her husband over to hang out (amongst other stuff) with her.
While she was on duty.
And supposed to be taking care of my son.
This same nurse wore a blue tooth in order to talk to her husband constantly. We are talking a SIX HOUR NON-STOP conversation. This was her way of keeping tabs on him and to make sure he wasn’t doing anything he shouldn’t. ha! If I needed to ask her a question she would respond by giving me the Stink Eye for interrupting her conversation with her husband.
Or how about the nurse that fell asleep so deeply during his shift that not even going into Parker’s room, turning off the TV, opening the blinds and getting Parker out of bed woke him up.
This was the same guy that sat in my living room all night long hanging out on our computer with one of my kids.
While Parker was by himself on his vent in his Safe Room.
And if Parker did something as dastardly as poop on this guy’s shift, you could hear this nurse YELLING, “Eww! This is so gross! Now it stinks in here! YUCK! I can’t stand this! Why couldn’t you have done this before I got here?!”
He would then come out of Parker’s safe room and demand to know where I kept the air freshener and what was he supposed to do about the stink in Parker’s room because he couldn’t be in there with such a malodorous stench.
Oh, yeah. THAT guy was a gem.
He musta missed the memo about how poop happens.
I’ll call this company and tell them what happened.  But they have me pegged as a real b*tch ….er… problem client. It seems as though insisting that their nurses keep your kid alive puts you on their PITA list.
To be fair, Parker’s day nurse that comes a few times a week is also from this same company and she is fantastic.
She’s also the reason we have stayed with this company.
It’s obvious that we now need to come up with a Plan B.
Preferably one that DOESN’T include having a night nurse kill my kid, iykwim.
Oh girl I so know what you mean. THIS is why we have never had any night nursing. I prefer the go it alone method top that…er… stuff.
We have one nurse that comes 2 nights a week who is fantastic(Junior loves her and is always excited to see her) and if it wasn’t for her I think I would give up on having nurses at all. No day nurse has worked out so far. You know its bad when the mere mention of a nurse coming over during the day sends my child into a panic.
I am just horrified that you guys go through this sort of stuff.
I would love to share some helpful and supportive comment, but am shocked at all the stories of incompetent nursing.
Carry on being that pita customer Tammy – you, your family and your son deserve better.
I soooooo know what you mean!!! We have had the nurses falling asleep, catching them going thru my purse, catching them check through our computer. One nurses’s coke head boyfriend even kicked in my back door one night. Yeah, well – he got me instead of her and the choice to call the police himself or start digging a hole in the backyard…..sobered him up real quick. We must have the saem nuring agency as well. You know, a threat to report them to the state agency that licenses them ususally makes them sit up and take notice.
My friend’s daughter was in a permanent vegitative state & had 24 hr nursing. She came home one day to find one nurse SMOKING CRACK IN HER GIRL’s ROOM! Then another flipped if she was even 5 minutes late getting home. Turns out she was driving across state lines because she lived in a half-way house on parol for stealing meds @ her hospital job – oh and lost her kids.
I am not sure what these agencies are thinking when they hire some of these people, but don’t feel upset about sending people away. We received 8 out of 60 hours for over 3 years because they couldn’t get anybody who had a lick of common sense!
One other thing I just thought of, you might check into what it takes to file an assault charge against somebody. If your nurse was trained & knew what she was supposed to do – like make sure your O2 dependent kid HAD o2, you might be able to file charges. Just find out & let the nursing agency they can bail the next one out of jail if it happens again. ;P
Feeling your pain…..Hugs to all of you!!!!
Steph
Steph,
Bottom line with this nurse is that I don’t think she had enough experience with trachs/vents to be here with Parker.
This gal was going to school during the day, working in the National Guard, and then doing 2-3 nights here…..when she actually showed up. ahem.
I think that’s too much and will be attuned to that in the future as well.
She was also studying for her RN while here at night. While I have NO problems with her studying while her, I do believe that from now on we are going to request RNs only….and request that they have extensive trach/vent training.
Your story makes me wonder how well agencies screen their nurses. Especially the ones who tend to hop from company to company. A new teacher has to be fingerprinted before they can start. I wonder what background checks a new nurse has to agree to.
I have found that in general nurses that work at nigher are crappier then the day nurses. Almost every time I have had issues with nurses at the hospital they have been night nurses.
PCMC now has a trach unit. There are four rooms reserved for trached kids ONLY.
Each kid gets their own nurse and the rooms are right there next to the nursing station.
It is magnificent. Each nurse has to qualify with extra trach/vent training.
Before trached kids were shipped straight to the PICU.
Since PCMC opened up this trach pod I’ve never had anything but good experiences with nurses.
Twitter: therextras
Jun 14, 10
All agencies are not created equal, for sure. Wishing you good luck and believing there are more responsible agencies out there.
Wow Tammy…that is horrible. I have NO experience with “needing home nurses” but I can totally understand why you and Reed would rather do this alone. NO ONE cares for our kids more than we do. I should have Laura read this post. She said Gracie will require a nurse around the clock or 2 trained adults. I think the 2 trained adults who love Gracie like their own would be the better option…after hearing these horror stories. So sad!
Steph,
I do believe that there are good night nurses out there. Gracie is going to need someone to spot her parents here and there.
Because no matter how much Mom and Dad love their kids, an exhausted and totally stressed out Mom and Dad aren’t good either.
Laura will just need to make sure that their nurse is TRACH TRAINED AND EXPERIENCED. I’d even suggest that they only accept RNs over less experienced LPNs.
And it is important too to not be afraid to tell a nursing company that a certain nurse isn’t working out and you’d like to try someone else.
On thing I’ve learned from this experience is that I am now going to make up a check list with items that must be checked off each time a nurse does her nightly charting. They will have to initial each item on the checklist.
Even though I know each step by heart, I’ll be using it as well just as a double check. I’d much rather be safe than sorry.
Twitter: kadiera
Jun 14, 10
Most of our nurses are great. We’ve really been lucky with the nurses we’ve had in the last year+ and we’ve had very few problems (then again, our agency only does trach kids, so that puts a different perspective on it for them).
The one night nurse we’ve fired couldn’t do a midnight tube feeding without us having to change the bed completely down to the mattress (and Alex sleeps on several alternating layers of blankets and waterproof pads) – not to mention finding it on the walls and ceiling of the bathroom, and on the bedroom floor. She couldn’t put clothes away with the other clothes (because apparently putting things back where she found them wasn’t a direction she could follow), we had to search for supplies after she put them away (and all the drawers are labelled), the suction tubing wasn’t getting changed per the agency’s checklist, etc etc etc. There was the night she thought it was odd that she didn’t suction….where it turned out she’d left the speaking valve on all night instead of switching to an HME.
Kadiera,
Our day nurse is amazing. I can honestly say that Parker loves her and she loves Parker. On the few days that I do go out (grocery shopping….stuff like that) I never worry.
There is a night nurse that comes on Saturday from 11:00 pm to 7:00 am that does a good job too.
But this last situation really scared the bejeebers out of me.
Even though Christopher isn’t trached, our doctor wrote for ONLY RN’s. Did you know they send CNA’s out too? Anyway, if the doc changes the orders for RN only with trach experience, there is no way the nursing agency can get around it without breaking the law.
I have fought nursing for a long time. I have also been sleeping in a recliner in Christopher’s room fo 6 years! We do have a great nurse now – our weekend nurses’ regular case ended and we convinced her to switch to nights during the week.
I agree, if I could keep our waiver and NOT have nursing it would be done in a heartbeat though.
We will keep you in our prayers! Good luck! Hugs!~
Steph and Christopher
Brother!!! What does it take to get good help?!
And, I agree, even my children could have done a better job than that nurse did! Hope you can come up with a better plan or a much better nurse! Hugs!!!
Un. Be. Lievable. I think I could have done a better job and I have no training whatsoever. Sorry you all had to go through that. {hugs}
Infuriating! I’m so sorry!
Twitter: kdlavoie
Jun 15, 10
My already high respect for moms with medically fragile kids just went up a notch. I spent all of 5 days in the hospital with my kid over New Years and it was too much for me. Had to demand to see a doctor one day, which was annoying (I mean we’re in the hospital…don’t they do rounds even?) but it was never at a life-threatening level, and of course he is all well now. The stress you all live under would do a lot of us in in no time flat…and even the hours of respite you get from “professionals” sounds very iffy. Praying you find a much better nurse for Parker. You deserve WAY better.
Oh sweet girl. Praying that God brings you the PERFECT night nurse. That is so maddening. {{{Hugs}}}
Oh my, that is absolutely horrible, Tami!
Tami –
I feel your pain! Fortunately, our night nurse is really good, but she is a complete b*tch. We ask her to change up medication times to better suit Potato’s needs and she says no! She says her “research” tells her otherwise. I want to say, “listen, ho, you are in my house and you will do what I tell you.”
We have been through 4 nursing agencies already.
I don’t really have any advice except to say that we have had more luck going with a nursing agency that specializes in pediatric care instead of general. The nurses are more apt to want to be with the child and love the child. The ones that work with geriatric patients tend to be meaner and less apt to want to concentrate on their actual job.
That being said, if you find the magic nursing solution, please let me know! I might pull my hair out over here
Oh, and what would you do about a nurse that is absolutely great and Potato loves, but who doesn’t know enough English to sing the ABCs correctly with a child with learning issues?
Wow, that is an awful story. I am so, so sorry to hear that. The sheer incompetence of some people, right? I mean, how we can entrust some of these people with our lives, or in your case the lives a of a loved one is a difficult one. I believe that nurses should go through a very similar rigorous training that doctors go through. And, at the very least, have to pass a background check. I do not think those are unreasonable requests for someone that literally has control over a life.
Have you ever thought about getting a portable oxygen concentrator? With my problems breathing, that’s what I decided too do. They are designed for laypeople (so you do not need a bunch of medical training to work) and they seem to provide a bunch of flexibility. I found mine at http://www.oxygenconcentratorstore.com, they seem to have the best prices. While this may not be the best option for you all, it helps to poke around and investigate, right?
I happened upon your blog from a link on your signature from PYP. My son’s name is Parker also, so it caught my eye.
I can’t believe the horrible experiences you’ve had with your home health nursing. Truly absurd! I’ve been a pediatric home health nurse for 6 years and you definitely have the worst horror stories I’ve ever heard! I take care of trach/vent kiddos and I love every minute of it. I’m so sorry things have been so awful for you. I don’t know where you are or what company you’re with, but I sincerely hope things improve for you. Home health nursing can be a blessing instead of a curse. Unfortunately, it sounds like you’ve only experienced curse. Best wishes for your sweet son.
Hi Tammy! Thanks for saying Hi on Caleb’s “wink” blog! I’ve enjoyed peeking at your wonderful family from time to time! You’re little Parker is amazing, and you are a wonderful mother!
I live in Utah as well, and have had nursing for the past year after Caleb was put on a vent at night…. I have a night nurse that comes a couple of times in the week, and a day nurse once a week for a couple of hours while I hit the grocery store– I was wondering…are you on the Travis C waiver? The waiver allowed me to hire my own nurse for my respite hours rather than using a nursing company. It won’t cover nights because those hours add up really quick, but all of the day time hours I need are easily covered since I usually just have a day nurse once a week. So, I was able to interview and handpick my own nurse and it’s worked out really well! e mail me if you have questions and I’ll tell you how we worked it out!
Happy Summer!!