About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Friday, February 14, 2014

Not such a happy Valentine's Day

Today was a very horrible no good very bad day! Once again, Jayen was a road side attraction. Jayen is assigned a one on one nurse, but I feel like his one on one is too busy with another one on one. Our nurses have been training other nurses and are sometimes too busy training to actually nurse. Tonight was probably the worst! At the evening shift change, our nurse didn't even introduce herself or talk to Jayen or us. The nurse who was training was very nice and started playing with Jayen when the trainer left the room, which I'm swore she wasn't supposed to do. She was laughing with him and played ping pong with him for over an hour. Since she was only training though, she was gone after 4 hours and we had another new trainee with our not so welcoming trainer. I'm so horribly upset with her lack of compassion and caring attitude towards Jayen. I really felt like she was more worried about when she got her break and making sure she met her quota for the day then taking care of my son who just had brain surgery. Mommy and daddy both left the room crying tonight. I don't know the last time I saw daddy cry. Really breaks my heart.
I'm hoping the nurse manager will be here over the weekend so I can ask that the training hold off for a little bit and care for Jayen is the primary concern. We don't understand why we have had to call so many people out on their own rules. They were clearly told to us and we are following them for our son's safety, but that apparently isn't everyone's concern.
 




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