Thursday, January 14, 2010

Wednesday, January 13th, 2010

Mommy has tried hard not to bad mouth any of my nurses in my blog despite having nurses that slept on the job (three), burst my g tube (one), missed shifts (one) and didn't notice I had the wrong size trach in despite having to chart the size each shift (all four nurses during that week). My parents have been struggling with one of my night nurses for months. Despite their better judgement when the last night nurse wasn't working out they gave my respite nurse a shot. They figured how crazy could she make us if we all pretty much slept her whole shift? She has already received two verbal warnings in the last few months for hounding my parents about my feeding protocols but she has apparently not learned her lesson. It was a rare occurrence, but last night I was awake when she came on shift at 10 pm. The nurse let Daddy know that she thought the reason I was awake was that I must be hungry. Now remember, I get five g tube feedings a day. The volume and calorie content are set by my GI and dietician to make sure I continue to grow appropriately. All the feedings I take orally are just for fun and are considered extra calories and are monitored closely by my feeding therapist to ensure I don't show any signs of aspiration. When Daddy headed to bed, my nurse was getting me out of bed to read me a story - or so my parents thought. When Mommy came out the next morning the first thing out of the nurse's mouth was that she put me in my high chair last night and fed me pudding and I loved it! "Maybe she doesn't eat pudding for you because you don't make it fun! She was hungry and once she ate something she calmed right down and went to sleep." This is where that "oh no you didn't" might spring to your mind like it did Mommy's! Mommy sat down and said in as nice a voice as she could, "Peyton is not malnourished, thin or failure to thrive (all terms this nurse has used in the past). She is followed by a GI, a dietician, a pediatrician and a feeding therapist. They are all completely comfortable with her growth. Although Peyton is short stature due to her syndrome, her height to weight is in proportion and she is perfectly healthy." Despite the fact that this nurse does not go to any doctor's appointments, therapy appointments or is involved in any of my plan of care she was not ready to give in without a fight. She told Mommy that she is a nurse and she has had g tube patients in the past and she knows that I am hungry. The nights I roll around in my sleep it is clear that I am hungry. Then she asked, "Haven't you ever been hungry before Tracy?" That's about the time Mommy had to hold herself back from jumping across the table. But she kept pretty calm and told the nurse, "Peyton loves to eat but that doesn't mean she is hungry. There is no way that the miniscule amounts of food she eats by mouth could possibly satisfy her if she was truly hungry - she eats it because she likes it not because she's hungry. I don't agree with you and I want you to stop using the term "hunger" because that's not what is going on!" That last comment sure set the nurse off and she responded with "you can't control what I say" and it started to get pretty ugly. Mommy finally called a halt to the fun and told the nurse that they were clearly at an impasse and at this point she was done talking about this topic and any future questions or concerns about it would need to be directed to the agency the nurse works for - not my parents. The nurse had to get a final word in and tell Mommy that "if you continue to ignore the reality of your daughter's hunger signs it could be detrimental to her in the future." Mommy let her know that she was willing to take the risk! Once the agency opened in the morning Mommy called the director and told her what had happened (the nurse had already called her as well but the director decided to call Mommy back first). The director agreed with Mommy and from here on out the topic of feedings, weight, calories, etc. are off the table for this nurse. In addition, she is being written up for unprofessional behavior.

Mommy has always been someone who has had a hard time standing up for herself but parenting a child with all my special needs has forced her to be more assertive on my behalf. So despite being sick to her stomach at confronting the nurse she knew she didn't have a choice. With such a horrible start to the morning it was no wonder that Mommy fought a migraine the entire day.
But when the nurse showed up tonight for her shift there was no mention of what had transpired earlier in the day.
My parents wish they could just fire her but the agency has been looking for a replacement for months now but haven't found one yet. Since she works the five nights during the week that my parents work the next morning they have kept her until now. But they realize that after two verbal and one written warning about the same problem it is unlikely she will keep her opinions to herself for long. The agency has a pediatric night nurse in orientation next week so let's all cross our fingers that she might work out. With all the stress with this nurse it only makes my parents appreciate the good nurses that much more!
Peyton Nicole Smith

1 comment:

  1. WOW! Even I am mad. She gave her pudding after 10pm? I don't EVER feed Traiton, pudding, candy, chocolate, soda, etc. I know if someone one was sneaking him pudding at night, he would be wide awake too. I would be livid!! Did she even brush her teeth after? We all know I always speak my mind. I am very proud you stood up for yourself and Peyton. Peyton is not malnourished and her development is fine. She is so bright, smart, and AMAZING. She excels in everything she does. If she was anything the nurse described, she would not be learning and doing the things she does now. I think Peyton looks great. I have never once thought she was small or thin for her age. Look at Trai, he only weighs 32lbs and he is healthy. As far as his development he is fine. Always remember every child is different. You and Travis are doing an amazing job with Peyton. She is a very loving, happy, and secure little girl.