Last night I kept waiting and waiting for the expected does of Coumadin for Evan. He was getting tired and I wanted to give it to him before he went to bed. I talked to his nurse to see what was going on. Apparently it had been ordered as a one time dose. After assuring her that I knew for a fact that Evan was going back on his Coumadin the nurse went to talk to the night doctor. Apparently this doctor got a bit snippy with the nurse saying that Cardiology wrote it and so they obviously wanted it that way. The nurse fought the good fight and got the doctor to look into the issue.
Then Pharmacy decided to throws fits about it. They did not want to send it up because Evan had not recently had his anti coagulation levels checked. A call had to be made to Evan's surgeon about the issue and he finally got everything smoothed out and around midnight Evan finally got the dose of Coumadin that he was supposed to get at 8 p.m.
This sort of thing is pretty much par for the course when you get up to the pediatric floor of this hospital. Communication seemingly flys out the window. Before we even went up to the floor Evan's surgeon and cardiologist made sure that I was clear on what should be happening over the weekend. They are all too familiar with these sorts of goings on. I have noted this time and time again when I get the inevitable customer satisfaction survey. I have even talked to people on the phone about it and yet nothing seems to have changed. I shudder to think of what could be happening if I was not so vigilant and constantly there all the time. If his INR had dropped low enough Evan could have formed another blood clot which could also cause another stroke.
I have to say that while the PICU is super loud, I prefer it to having to deal with this crap all the time. I know all the nurses there. You get to spend more than five seconds talking to the doctor. I also have a good reputation there. They know that I am an involved parent that is willing to assist in my son's care. They will take into account the things I say and not treat me like I am a moron.
I actually got suggestions yesterday morning from one of the doctors on the peds floor about what to feed Evan so that he will not loose too much weight. Like I have not been doing that all his life. Like I don't know what he will eat and what he will turn his nose up at. Yeah, I had given him fruit for breakfast but I had wanted to give him something easy to digest for his first meal of solids. The doctor did not even think to ask me why I did what I did. I am counting down the days until we can get home.
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4 comments:
Ugh!!!!!
How frustrating!
The pharmacy is thinking protocol and you're thinking stroke!
I wonder if the hospital is being overly cautious after the neonatal heparin ODs that another hospital experienced.
Sounds like the docs were giving you a "standard spiel" about diet without really assessing what you already knew!
Either way, it's like you can't let your guard down for a minute and that can't be good for you.
Kids thrive on routine (ie stable bedtimes) but it doesn't sound like there is much of it there.
Sometimes I get to the point where I just want to smack the next "knowing" person who tries to give me "expert" advice on what and how to feed my son.
I just want to say, um, hello, I have been dealing with this for a YEAR AND A HALF now; I have read books; I have consulted with nutritionists, gastronenterologists, endocrinologists, and therapists of every stripe (each of whom, of course, gave me DIFFERENT advice); I have tried every possible thing that a person could safely try to get this child to gain weight, including everything you just told me to do. I live this problem every hour of every day. I know what I am doing. Now back the %$*&# off unless you've got a miracle in your pocket you'd like to hand me.
I often wonder how many of these pediatric doctors and nurses actually have their own children, and how those who do would feel if they found themselves treated the same way they tend to treat their patients' parents.
You are such an amazing mom. I don't know how I would find the strength to deal with a broken medical system as often as you do. A broken system where, I might add, most medical professionals seem to assume child patients' parents are ignoramuses who can't grasp the most basic information about their children's health. Charming, truly.
Oh Hon, I feel for you. I hate how doctors, and nurses and even pharmacies think they know better. Perhaps usually they are right. But for those of us who deal with a chronically ill child, we know and are in tune with their bodies way more.
I can count the times I've fought for my youngest (who's got chronic lung problems) because the doctors thought i was exaggerating, only to find out 5 minutes later that she is turning blue from lack of oxygen. As a mother of a sick child, it is your duty to fight for the child, against all odds, but it sure would be nice if the medical profession was on your side, rather than not.
Without sounding condesending, I am very proud of how you handled all that. Kudos to you for standing your ground and I hope he's feeling better soon .
I'm sendind good thoughts your way.
Michelle
Hey there Awesome and H. (and the rest of your family!)
Hope you are all out of there SOON.
Glad that Evan has a mama who knows what he needs and is helping him out.
Best to all of you!
tl
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