Special Needs Child and Incompetent Parents. (VENT!)

[TexasPediRN]

Let me start off by saying I LOVE pediatic private duty nursing- but today I'm so frustrated and annoyed with the fact that incompetent people should not be allowed to raise children, let alone children with special needs.

My patient today is 2 1/2, former preemie, trach and gbutton. Honestly doesnt need nursing care, but receives it anyway. Gbutton use only at night, awaiting decannulation in the spring. (Hes so cute though- hand him his PMV and he puts it on himself!)

Was with this patient last Thursday, gave the last dose of Pulmicort Thurs AM (ordered BID) and informed parents they need to get more. (pt also receives xopenex treatments).

Come to work today, Monday- THERE IS NO Pulimort - Child sounds like Darth Vader. Congested, Wheezes, you name in. But o2 sat is good! 98% on R.A. To top this off- THERE IS NO FOOD FOR THE CHILD TO EAT. Ugh. Parents leave at 0915 to get food, return at 1130- meanwhile I bolused child with 6oz pediasure and 2oz water- kids got to have something in his stomach (refused to drink or eat anything- even tried to have him eat some applesauce I had with me!) Look through cabinets and fridge- no milk, no bread..no food..empty. Child is extremly picky with food- loves baby food. Stage 2..parents dont want to advance him, but yet he eats chips and pizza. But thats a whole other story.

(He is on a night drip- thank god, I think he gets most of his nutrition with this)

Spoke with father upon return him- Pulmicort is ready, your son needs it- hes congested and wheezing. Agrees. Sits down and watches TV. UGH

1530 rolls around, my shift is over at 1700. Stress importance of medication-child needs it. Informs nurse he has no car..wont take the bus to pharmacy because it takes too long! Spoke with nursing sup yet again for today- she loved the no food/no med story. Agreed with my choice to bolus him (did have an order)- Didnt like that I gave him some of my food but that I didnt care- it was a little extreme. There wasnt anything else to give him.

1600. Decides to come out and do sup. visit. Sets parents straight. Tells father he needs to have medication tonight, or he can loose nursing care. (Yay nursing supervisor!)

1640- ATTEMPT to contact drs office to let them know of situation again- answering service woman is not helpful. Call back again- "I need to speak to the on-call dr"..12 minutes later..off the phone, will be suprised if they call back. Luckily, the nursing sup. gives her cell number to speak with the doctor..

Spoke with Primary care doctors nurse today as well..yes.. CYS has already been notified..I beleive once- I think we need to do it again. Nurse hates this case- informed that there isnt even baby food in house for child- also loves hearing this.

This was a horrible day And I feel so bad for this child. I'm actually nervous to go back there Monday since I had the nursing sup. out there as well as talking with the drs office, as well as her setting the parents straight.

But I will not be defeated! This child needs some good care and I swear I'm going to give it.

I feel much better after venting....wow..I just needed to release all that frustration.

I guess to that I should make another CYS referral...in addition to the others made. *sigh*

Thanks for listening...

[MissJoRN, RN]

I feel your frustration! Sorry about the day! How many parents of special needs kids do we know who would love to run out food shopping for a former sickie/ trached kid who actually likes to eat!! I can think of a few! Too bad hubby says I can't bring my work home with me...

BTW- I have a cutie who begs for my snacks... parents then buy the same and cutie won't eat it (fruit, cookies, anything) until I come back! I think it's the same for some of the other nurses. I'll keep it a secret because me sharing my food makes me feel better when the "old-world" values family insists of sharing dinner with me! They get very offended if I refuse and quote policy... sometimes I bring cookies, etc, too to ease my guilt. Believe me, I've known nurses to do much worse!

[TheCommuter, BSN, RN]

This story is a shame.

Like you, I believe that some parents are truly unfit. They place their own selfish wants above the needs of their children. The parents of this child seemed quite selfish if they're unwilling to catch the bus to a nearby pharmacy for important medications.

[hipab4hands]

You've done a wonderful job and have this child's welfare at heart (unlike the parents).

Hopefully a visit from Child Protective Services will shake up the parents enough to start taking care of the child. If not, at least the child can be removed and put into home, where someone cares.

[Nurse-To-Be-Joy]

That is so sad that the child has to have parents like these. Hopefully CPS will whip them into shape, or take their child away. Good for you for trying to make things better!

[nursemelani]

Wow-

What a difference from the family that I work with. I too do peds home health, and I have a regular little guy that I take care of. Mom is the opposite end of the spectrum. Totally overprotective, takes her child to the Dr at the first sniffle, buys him everything that the therapists suggest, even though they are strapped for cash. She has had to be very assertive with this kids doctors, since most of them feel that he probably won't live long, and don't understand why she wants everything done for him. I have often told her that if her son was born into a different family, he wouldn't still be here.

On the other hand, I had a mom years ago who refused to have her kids trach removed, even though he didn't need it anymore, because she didn't want to lose her nursing services. She also smoked in the same room with this kid, and I never saw her give him any affection.

Most of my families are great though. I don't know how they do it. Especially the foster moms who willingly take in medically fragile kids, and sometimes adopt several of them!!

[Bipley]

This story is a shame.

Like you, I believe that some parents are truly unfit. They place their own selfish wants above the needs of their children. The parents of this child seemed quite selfish if they're unwilling to catch the bus to a nearby pharmacy for important medications.

In my part of the world they don't need to. On welfare? Need Tylenol? Call the hospital OP pharmacy and the courier will DELIVER your FREE brand name Tylenol to your home.

People quickly learn that the less they do, the more we do for them. Your child is sick? That's okay, we'll send an ambulance for those sniffles. It's sure cheaper for you than taking a bus.

We have created this problem, we need to UNcreate it.

[TexasPediRN]

nursemelani:

Most of my families are great and I cant complain too much- this one just gets to me so much. I wish they were just a little bit overprotective!

that mother your mentioned you had a few years ago who wouldnt remove her child's trach and smoked around him?? Thats just wrong! Why have a trach in longer then you have to! Some people...

Bipley:

you are right. This family is Medicaid, and we get cab service to and from any dr's apt. I'm also thinking Medicaid will pay for his meds..so how hard can it be to take the bus for a free or extremly reduced cost medication??

I also know they get disability for this child,and its not being spent on him. (they live with another family member, who pays all the bills- its worrysome what she has told me )

I have to talk to my sup. again today- she told the dad he needed that med last night and she's going to call this AM to make sure he has it.

I'm so worried they are going to say something to me on Monday when I go back..but oh well..I have their childs best interest at heart, something that they do not.

[NRSKarenRN, BSN, RN]

Loved it when parents called our DME company requesting Medicaid pay for Lil Swimmers diapers....

[TheCommuter, BSN, RN]

Loved it when parents called our DME company requesting Medicaid pay for Lil Swimmers diapers....

Hey!!! :chuckle

Swimming is a health-promoting activity! :roll

Perhaps this was on their mind when they placed that phone call to be reimbursed for the Lil Swimmers diapers, though I think these parents are out to obtain as many free goodies as possible.

[LuvMyGamecocks]

It truly is a shame. Kids aren't born knowing that life CAN be happy and fun and full of love from parents that are actually interested in their health and well-being. It's sad to know that some children will grow up not knowing anything different about how life should be.

Going home to hug my 2 little ones a little tighter tonight...

[MissJoRN, RN]

Hey!!! :chuckle

Swimming is a health-promoting activity! :roll

Perhaps this was on their mind when they placed that phone call to be reimbursed for the Lil Swimmers diapers, though I think these parents are out to obtain as many free goodies as possible.

LOL, I almost was defensive over that post since I remember when little swimmers were new and a dream come true for a slender 7 y/o I took to swim therapy! I used to obsessively clip coupons for them.

But agree, swim therepy is not what many of Karen's clients have in mind- and isn't it suspicious when a family orders diapers and pull-up for the "same" child- in different sizes? I worked for a family that still got their large insurance paid for boxes of dipes after we worked hard to potty train their oldest, once the youngest was potty trained we saw no more of those boxes!