Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Thursday, October 28, 2010

I eat doctors for lunch...

Don't get me wrong...95% of my nurses rock my socks. But let's face it, my kid is sick, I need 100% all of the time. Period. When you first arrive at a place like this the nursing staff gives you a lot of "fluff". They sugar coat everything, tell you 'you are the most important person in your child's care, if you see a problem, tell us'. They make sure you have everything you need and they know DAMN WELL you are feeling confused, upset and vulnerable. The doctors "dumb down" and explain everything in baby terms for you to understand, they tell you the minimum amount of information possible as to not "overwhelm" you.

After a couple of weeks you really start to see how things REALLY work...if you pay attention. Day in and day out you notice the nurses giving all the new admissions the same textbook "schpeal"  you got. Really they don't seem to give a crap if you see changes in your child...they are the "trained professionals" therefore if they do not think something is wrong, it simply isn't. You notice the doctors don't get messages you wanted relayed to them. Notes about care for your child do not actually get written in the care plan if they don't come from a nurse or doctor. Doctors don't want suggestions because you are merely a parent with the knowledge of a maggot compared to their textbook training and ALL MIGHTY BRAIN POWER!!!!!!

Well...anyone who knows me, knows I don't take crap no matter who you are or what you do. I personally don't like being treated like a dumb person, I don't like half of the story or half of the truth, and I especially don't like FALSE promises. I don't appreciate having my 'mother' stripped from me on the basis of rank. Did you know that if you get a nursing degree you can change diapers better and faster with no actual child rearing experience? WOW!

WEEK 6: Lets just say I have been very persistent. I ask a TON of questions. I corner my doctors in my room like a scene from 'Misery' and I don't let them leave until I feel like I have ALL of the details. I make suggestions about what I think is best for my son and I take it straight to the attending physician and skip the nurses. I take that bright red pen on the care index and write down important information MYSELF. (For example: "PLEASE do not put Ayzac's Nystatin, which is for ORAL THRUSH, through his NG tube as this defeats the purpose of the medication entirely" and better yet "PLEASE do not give Ayzac his Amlodapene, which decreases his blood pressure, BEFORE taking the blood pressure!!! You will get a false blood pressure reading!!!!)

Okay...breathe...relax. My Metabolic doctor came in for rounds today. I spoke with him about many of my pet peeves and concerns about how we are being treated. Now I get full say about everything. I get to do the med's, the formula mixing, the blood pressure...anything I want. YAY! And doesn't that make sense since I will have to do all of this at home anyway??

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