We are very frustrated right now. Ella has had a rough time since Thursday and we couldnt figure out why because we thought nothing had changed, found out this evening we were wrong on that front. I mentioned in an earlier post that we had had a care conference with Ellas head attending and fellow on Tuesday per their request where we discussed her pain and agitation and how she presents these different than most kids. We talked about putting her on a pain regiment for at least 2 to 3 days after she has a surgery to help keep her schedule as normal as possible, especially since we are trying to get food into her so she doesnt need a g tube. We were assured by her attending this would happen. So Ella had her lumbar puncture on Tuesday and her sinus surgery on wednesday. During the sinus surgery I talked with the resident and asked her to confirm the pain regiment was in place. She checked and we were good. Ella started throwing up Thursday night which continued until friday afternoon and has been agitated and uncomfortable and not wanting to eat. We asked the nursing staff if she was getting her morphine as scheduled every day at 8 am, 2 PM and them again at 8 PM and have been told every day yes, she has taken it like a champ. We requested that benadryl be taken off her list of prescribed meds because a nurse gave it to her instead of the pain med earlier this week which knocked Ella out and changed the time she got her oral chemo med by 4 hours. Its important she get that around the same time each day per her head attending doc. So Ella was supposed to have ativan for her agitation as well as nauseau. Yesterday afternoon when she was throwing up we requested to have ativan given only to be told it had been taken off her allowed meds and we werent informed of this change either. The doc did change the order and within 15 minutes Ella felt better and was a different kid. So today when I got back to the hospital Ella still wasnt right and I asked the nurse when she could have her pain meds next because she told me she hurt. The nurse informed me that the order for her pain medication had been changed on Thursday morning and Ella was only to get it every 12 hours now, same dose. No one bothered to tell us this and we have struggled since Thursday to figure out what the issue was and also as a result once again her care has been interrupted by someones ignorant decision. What we are most disturbed and pissed about is that the staff had flat out lied to us for days which is unbelievable. Is this a childrens hospital where they give the best care to a very sick and scared 5 year old or hospice care where no one gives a damn about my daughter??? We can never get answers on the weekend but I can guarantee you all that we will demand answers and get to the bottom of this ridiculousness on Monday. Weve talked with staff time and again for assurance Ella is getting what weve requested and what she needs, yet not once have we been told she isnt. What has she been being given when weve been told she took her pain meds like a champ????
Posted on: Sun, 21 Sep 2014 03:24:19 +0000
Trending Topics
Recently Viewed Topics
© 2015