I am at my absolute wits end with one of my cases. (I am a pedi home health nurse.)
This child is very complex, developmentally delayed, failure to thrive, G-tube dependent, aspiration, seizure disorder, chronic respiratory disease, etc. He was originally referred to my agency over a year ago for G-tube teaching. G-tube teaching kids are usually incredibly straight forward, get a handful of visits and are then discharged as long as they are gaining weight and their parents are able to manage their care. This child is still on service a year later because neither criteria has been met. He has had poor weight gain overall with periods of weight loss/gain. Every time he loses weight it somehow comes out that his mom isn't feeding him appropriately. He is on very straightforward G-tube feeds that any other parent I've ever dealt with in six years of being a pediatric nurse could manage. Three bolus feeds per day and continuous overnight feeds. Every time the MD changes his feed schedule, it takes me weeks to months to get the mother to understand how to do it. For example, the most recent changes involved changing his overnight feeds from 500 mL at 50 mL/hr to 600 mL at 60 mL/hr. Mother first thought that if she ran the feeds at 60 mL/hr but still set the volume at 500 that that would give him more. I finally got her to understand that running the feeds faster doesn't do anything. Then it took me at least a month to get her to understand that in order to give him 600 mL she needs to put more than two 250 mL cans of formula in the bag. She still doesn't do that consistently. I am constantly in touch with his doctor, social worker and worker with the state.
The bottom line is really that this family lacks the ability to care for a child this complex- his medical team and I are completely on the same page about that. BUT, the state is completely dragging its heels. We had a large team meeting over a month ago with all of his providers-MD, Social Worker, me, CPS worker and supervisor, Early Intervention providers and the workers who follow the mother's case. It seemed like it was a productive meeting but absolutely no progress has been made in the past month.
Two weeks ago, I was with him for three days teaching the mother how to crush a pill. I'm still not convinced that she can do that. This week, I went to see him on Wednesday and she hadn't given him any of his meds since Sunday because she "forgot" them at her sister's house. He is on critical medications- seizure meds and electrolyte supplements that it NOT ok for them to just "forget". Mom promised she would have them by day's end and we agreed that I would come back out today to check on the med situation. I tried to call her at least 10 times yesterday on 4 different phone numbers with no success. I was finally able to reach the father today and he confirmed that mom and the child were with him and that it was ok to come to his house. Less than 5 minutes after I spoke with him, the mother began calling me. I got 3 missed calls and a text message from her while I was with another patient. She then proceeded to tell me that I didn't need to come today because I just saw the child on Wednesday and that I couldn't see him until Wednesday because "that's when they'll be home."
There is not one single doubt in my mind that the reason that she didn't want me to see him today was because she still doesn't have his medication and has still not been giving it to him. She claims that she "ran out" of his seizure medication this morning because the pharmacy "didn't give her enough" the last time. This is untrue as I have seen this prescription bottle at least half a dozen times in the past four weeks. She is not intelligent enough to realize that I will see the date the prescription was filled on the bottle when I go next week.
I just do NOT know what to do here. I updated his doctor, social worker, CPS worker and supervisor today immediately after this happened but what do you do when the state is already involved and they just won't act?
Jun 28, '13
This a long shot but I'm way out of my area of nursing. I can think of two different examples that occurred in this area that ended up
being handled in off-beat ways in order to accomplish anything.
#1 The second family my husband worked as a mentor with had a child with a gtube and her mom was barely literate and probably had
an IQ of about 60. When the nurse and social worker realized that nothing they said would make much of a difference in the girl being fed properly, they notified CYS, who were NOT much help. What the nurse and social worker finally devised:
They recorded every last detail of someone buying, doing the feed, etc. on VCR and gave it to the mother. They also
made an illustrated guide without words that showed the same thing. They also gave her a label from one of the cans
to show the sales person so she'd be sure she got the right formula. They showed her how to use a simple stove timer
so she could set it for the time of the next feeding. With lots of supervision and praise, it worked.
#2 In this case, the mom could have, but just didn't. My cousin was the nurse on the case. Notifying CYS changed absolutely
nothing! It was reported three times. Finally she called the national 800 number in the phone book. Whatever they said sure
lit a fire under the local agency.
Would either of these work?
Last edit by sharpeimom on Jun 28, '13
: Reason: lousy typing skills!