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    Wife to Bryce and mother of three children, LJ, Noah, and Sofia. Living in a very "special" world of special needs. LJ has cerebral palsy, myoclonic seizures, developmental delays, and cortical visual impairment. This is our yellow brick road.
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So much for taking some stress off

Well, we’ve already been through 1 nurse and 2 agencies.

From the start, I knew I’d want to meet the nurse before having them assigned to us.  I’m glad we did because the first nurse they sent us lived 80 mile away.  At the time, we were asking for 10 hours a day, 5 days a week.  It’s a lot but financially we’ve been hit pretty hard with all of LJ’s therapies, annual appointments, and his surgery.  Right now it’s a busy time at my work, so I was hoping to try to catch up on some hours.  When school started, we would reduce the hours. 

We decided to go with a different agency, since the first one didn’t seem to use common sense (hello, what would we do in the winter time when it snowed?). They said they’d send someone out Thursday but they weren’t sure what time, so they would call before hand.  No one showed up.  No one called.  It wasn’t until the next day that the agency called and explained that he didn’t have all his paperwork in, blah blah blah.  Ok…

So Monday rolls around (the day of LJ’s EEG, so we were sleep deprived) and I get a call early in the morning.  The lady asks, do you not need a nurse today?  I’m like, what is going on?  No one told me you were coming and I told them I had to meet the nurse before signing up with her.  She apologizes and I feel bad for her coming out for no reason.  But really, I was not with it that day.

We finally meet her the next day.  She’s perfect.  Plenty of experience in pediatrics, plenty of home nursing care experience, has kids, seems very sweet.  I tell her about the schedule change when school starts and she nods.  She didn’t start until Friday, which I find odd, since she was suppose to start Monday, she should have had her whole week free.

Everything seems to be going well.  She tends to do things her way, which is alright.  There are a few things that we’d like to do our way, for consistency and so LJ can anticipate what’s happening.  I start talking about school, routines, therapies I’d like her to start working on, after she’s had some demonstration with our therapists.

Last week, LJ had to have a follow-up GI appointment.  His button has been moving too much which has caused the skin to grow weird (I wasn’t there for the appointment so I’m really not too sure about what I’m talking about). They sprayed some stuff on it to get it to fall off and instructed us how to clean it and use tape to keep the tubing from moving the button. 

Louie’s pretty accurate when he relays information to me from doctors.  Sure, sometimes he forgets to tell me things, but what he does tell me, is usually correct. Even if I’m there, we tend to have different perceptions of what the doctor says, and he’s usually correct.  It doesn’t bother me like it once did; he’s just better at science then I am!

Anyway, the point of that was that he was showing the nurse how to do some of those things, and she would talk over him.  He’s get a little irritated but would get back to the point.  Then she said, well I don’t know how much longer I’m going to be here with the school schedule.  Ummmm…. okay.

Needless to say, that upset us a bit.  First of all, we mentioned this to her and she didn’t make it seem like a big deal.  Second of all, we wouldn’t be spending all this time training her if we knew we had to do it all over again.  The agencies had offered a temp nurse until we got a permanent one and I said no, because training in itself takes a lot of time.

She was off and on the phone that day with the agency, even after Louie told her it wasn’t her job to get us another nurse and that we’d take care of it.  Later, after she’s off, she calls me and tells me that she really is in love with LJ and our family and that the agency called her to tell her that we actually wanted more hours then she thought.  I told her I’d talk to Louie about it and I’d see her tomorrow.  Louie just said he would talk to her about the hours we needed.

This morning, I realize it’s pretty quiet and notice it’s 10 after 7 and our nurse isn’t here.  Ok… I give her some more time then I call her.  She tells me that she took herself off our case on Wed and finished out the week (she left early on Friday) and didn’t they send someone else?  I told her that I was upset because no one told me AGAIN what was going on.  She said do you need someone? And I start to talk, although I’m not sure what I was saying but she just starts talking over me again.  Finally I said, don’t you worry about it and hung up.

The thing is, I feel bad about this!  I mean, obviously she wasn’t a great fit with our family, but I liked her and I hate that our relationship ended like that.  At the same time, I’m furious that no one told me what the heck was going on!  Don’t they think it’s important to inform the families?  We were even going to use the same agency, but Louie was just like, forget it.  We’ll use one our therapist’s recommend.

We have 2 weeks left with our Early Intervention therapists and one week with our Rehab. Institute (R.I.) therapists.  Luckily, the therapists at the R.I. are putting together some stretching guidelines and therapies to work on.  I really wanted our nurse to have a good understanding of LJ and his disabilities so they could better understand him.  School starts in 3 weeks, which seems to be our deadline now.

Obviously, there was a huge communication issue, regardless of how many times I tried to clarify it with her.  Did I miss something?  What do you guys think?


6 Responses

  1. I would be very frustrated also! I think you did all you could to communicate with her- it sounds like she just wasn’t listening. All in all it will probably be best not to have that certain nurse since it seems she wasn’t very willing to listen. And the skin around the button is called granulation tissue. Anna had some at first but as we stabilized her button more it got much better. Hope LJ’s is better soon!

    • Jamie, I know it’s for the best that we not have her but it’s frustrating that she, nor the agency, let us know. It has really messed up my work schedule.
      We’ve been taping the extention cord to him but I think he is still developing the granulation tissue. I wonder if his balloon needs to be filled more? they haven’t replaced the button yet so I guess I’ll just have to wait and ask.

  2. That’s rough. And unfortunately, not uncommon. Sorry. See if this helps – pay attention to whether who you are talking to is an RN or an LVN. Here (don’t know what state you are in) LVN’s do most of the shift work and RN’s are case managers. I would target the case manager for all the issues of scheduling, fit of personnel to your family and the need for consistency.

    Wishing you better luck with the next nurse.

    • our Case manager is an RN and she’s pretty good. She is the one taking care of contacting the agencies about our needs, but the agency still contacts us to set up times to meet the nurses and such. I’m just ticked off that the agency never even warned us… like they could have said, the nurse has been taken off the case but we are looking for a replacement! nope, they never even bothered to communicate. argh.
      I don’t think it would be as frustrating if there wasn’t SO MUCH going on right now. but I pretty much told my work to staff me as much as possible because I thought she’d be there.

  3. My goodness. You did a great job communicating what you wanted, but like the other Jamie said, no one was listening.

    I hope your next nurse is a way better fit!

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