4th Birthday Photo Session

4th Birthday Photo Session

Monday, September 19, 2011

ADVOCATING For Andi ...(Call Security!)

I learned a long time ago that writing helps me in a variety of ways.  It helps clear my head, resolve emotion, understand situations better, and really look at all aspects of what's going on. More often than not, it's just a place to dump thoughts and emotions.  Here it is 1:30 a.m., the night before Andi's surgery, and I'm sitting here to write because I just had it out with the nurse, the Charge Nurse, and the resident.  They have been putting Andi through hell trying to get blood drawn for a variety of pre-op labs.  Andi is a tough draw.  She has small veins and when they try to get them, they often disappear. IV Therapy, whom have never been successful with Andi, came in this morning and after several minutes of looking at the veins, they decided on one.  Andi screams and cries 'all done!' during all of it.  She is horrified and looks at me like "why Momma, why?"  It made me cry.  So, they shove the needle in and they can't find the vein.  They maneuver the needle around in her arm trying to find them.  Andi shrieks and cries torture.  After several minutes, they finally give up and start to look for another vein.  Before they are able to do that, I stop them and say that's enough, they're done, and she's not a pin cushion.  I pick up my baby and soothe her calm.  She had been crying so long though she had the breathing spasms that one who has cried hard have... Grueling hell, I hold her and cry.  Thoughts of guilt and questions wondering who we pissed off, or how we got such a raw deal run through my mind.  Why is Andi having to deal with all this shit? It's so unfair to put her through so much.  I ponder karma, fate, and all the stuff in between.  Exhausted, I laid her down and she fell asleep.

A few minutes later the surgery and the Kaiser rounding team came in together.  They wanted to go over the game plan and the Director of Surgery asks me as they are coming in, "how's it going?" or something like that, and I said, 'well, not good.  Not good at all.'  I went off about how everyone knows that Andi is a tough lab draw, I told them I only allowed IV Therapy one try. I reminded them all that Andi is traumatized by the IV's and now anyone that comes around her, she studies and is afraid of anyone doing anything to her.  Even taking her blood pressure sends her into a fit.  I said, 'send me the best person you have in this place, and they get ONE chance.  One Chance to get it.  We're sick to death of her being treated like a pin cushion.  We've been going through this her whole life, this is her 5th surgery, and frankly, we're not tolerating anymore. We're done!'   They heard my frustration, listened and nodded and placated me like the whole medical community has to, but I swear I felt some assholes pucker.  They said that they'd call Panda to do the draw.  Panda is seemingly the step above IV Therapy.  They do blood draws, IV placement, transport.  We usually have luck with them, but, not always.  Normally, each team is allowed two blood draws.  The lady from Panda that came around 10:30 is the same lady who got Andi's fresh IV in the night before, another torture-fest, but she got it on the first try.  So tonight, she looked and looked for a possible vein in Andi, all while Andi cried in terror.  She tried one and it went away.  Then tried one in her forehead, and she couldn't grab the vein, but was able to drip several drops in a container to get one of the tests done.  She said she could try to get more with a heal poke, but... and I said, 'no, I have one more trick in my bag, and that's to call the NICU.'  The people in the NICU are the best at the hard gets, and they have told me that they will always come to help Andi, just to give them a call.  Panda lady agreed and midnight, a lady from the NICU came to try on Andi.  She looked and looked, all while Andi cried in terror, and decided she would only try once, and it would be in her hand.  This lady remembered Andi, because of her name, and asked about how she's been doing.  I gave her the low-down. She was nice and I appreciated her demeanor.  She tried the hand and the vein went away, all while Andi shrieked and cried in terror.  I thanked her for trying and she rubbed my shoulder and wished me luck.  Sadly, that luck has not shown itself just yet.  A few minutes later, the Charge Nurse (the bitch that runs the floor) came in and said that she spoke with the Dr's and they said they had to get a type-screen, else they can't do the surgery.  I said, 'her blood type is on file' and she explained that it's required no matter what, to help protect the child.  I said I understood.  She wanted to do a heal poke to get the blood, all while Andi at this point is snoring with exhaustion.  Some time around this point, I snapped.  Something in me just came unglued. I started with something to the effect of why on earth, knowing that Andi is a hard get, would they not know at the beginning of this what the bare minimum, most crucial lab would be and work on that first?  I went off for I don't even know how long. I dropped all sorts of colorful words, and was so angry I was pacing in the smallest circle.  I walked down the hallway, twice, and paced in a small circle.  I was beyond pissed!  I came back and went off some more, but a little more controlled.  The words, 'levels of incompetence' dropped easily from my mouth.  Sadly, at one point before my last tantrum walk of the hallway, said something like I was so pissed I just wanted to hit someone.'  Of course, I would never, well, given my night... never say never... but really, I'm not one of those people.  And when I continued on her, she said she felt threatened, and I said something like, 'give me an f-ing break' and she said she didn't feel comfortable doing the heal poke for fear of not getting it, or something like that, and I told her to run along then, get out, and get someone who can get it done.

I honestly can't remember a time that I've ever been so incredibly mad.  Watching your child scream, cry and beg 'all done' repeatedly, day after day of failed attempts to get something done, and that will send anyone to that dark side.  The nurse and I had a few words, and I think I said something like that Charge bitch can kiss my ass.  Sorry if thou offend you as well, but, at this point, 2:15 a.m., I really don't care.  This is a total repeat of the night before her heart surgery.  Four different teams tried to get an IV in Andi.  The night before her single most important surgery.  Daddy Bean and I laid on the guest beds in the room unable to sleep because the same level of torture was being done to our daughter.  Totally unforgivable, especially when we told the anesthesiologist the next morning what had happened, he pounded his hand down on the counter in frustration and begged, 'why do they do that?  I can totally get that in so easy once I have her!'

So, around 1:10 a.m., the resident on for the night comes in, full well knowing I'm pissed off, ready to hear me out and come up with a solution.  She said they can do the heal poke tonight, or maybe in the morning.  To make a really long story short, I went off on her to a lesser level, and posed the thought I've had all along which is, 'the night before a surgery, isn't it important for the patient to get a good night's sleep?'  I would think so.  I think 'incompetence' and 'bullshit' and a slew of inappropriate words flew out.  I reminded her that we are not new at this, this is our fifth surgery.  Our fifth time and this.  There is a failure going on when it takes four or five times and no one can get a vein, and then come to find out that the most important lab isn't even done first.  I said, 'look I sell books.  I don't do what you do for a living.  But even I would know that on a hard get such as Andi, to know going in, 'ok, what's the most important lab' and work from there.  I chewed her ass some more, apologized a few times that she was getting the brunt of a lot of built-up frustration.  And then I'd chew her ass some more.  I really didn't recognize the person I was being, but as Andi laid there sleeping, I was
"ADVOCATING" (such an overused word here) for my daughter.  I made the executive decision that if it can wait for a few hours, pointing to the clock saying, which isn't very far off, then that's what we're going to do.  She tried to feed me more company lines, and I wasn't having it.

I almost feel the need to talk to the regular team tomorrow to see what it's going to take to get us back up on our usual floor. It's worth asking.  I pointed out to all the people we've seen and laid into these past few days, that if this was their child and they were the ones dealing with the multi-layers of absolute shit, then they could probably grab a glimpse of what it's like and why I'm so enraged.  They all say, 'I understand!' when clearly, they don't.

I told them that they aren't doing vitals anytime soon. She needs sleep.  The regular nurse came back in to tell me what her plan was, and I tried to assure her that this isn't directed at her and not to take it personally, but this has been a build up over the past 15 months.  She said she understood, but that she felt threatened when I said I wanted to hit someone.  I felt the hair stand up and I was ashamed.  I was so full of anger when I said that, and I failed to realized some of the horrific parents they've encountered.  I sincerely apologized a few times, and said I just realized that they see not the greatest parents, but assured her that I've had a multitude of Dr's and Nurses et al, state as fact that I'm one of the best Mom's they've seen. That seemed to settle her down a bit.  I said that my adrenaline was pumping so much that I had to sit here and write it all out so I can finally get some sleep.

So, I'm an asshole, but least I'm "ADVOCATING" for Andi.  She's not a g. damn pin cushion! So there.

It's 2:30 and Andi is sleeping again.  She keeps waking and crying, but she really just wants to know I'm here.  She's wiped out.  She's had a runny nose most of the day, and has coughed a bit.  She sounds better now, but I've been unsure if they will even do the surgery if she has this going on tomorrow.  But as of now, we're supposed to go in around 1 or 1:30.


  1. you go gget them mummy YOU ARE THE BEST ADVOCATE FOR YA CHILD SSURE AS HELL THEY SEEN BAD PARENTS BUT HOW YA NO THEY WERENT DOING AS YOU ARE KEEP IT UP i my self am a hard stick here r soem things that worked with me that u might want to try befor a really big blood test be ware these things didnt aALLWAYS WORK BUT SOMETIEMS DID heres one a warm towel wrapped around the areas where they thought the veins were mainly arms cut downs YESA CUTDOWNS they have had to cut down the veins in me a few times a central or picc line if you know the stay is gonna be a long one you can draw bloods form that. in fact when she goes in for surgery say your aussie charger said she needs a central line for bloods general surgery the people doing the tube can do it even the anestics people can they have with me fingerpricks worked with me to i also like the pathologists that know me well to do me once a new one tried couldnt get it got one of the older ones that new me she looked got it first go so keep at it and try what i said and hope it works

  2. I'm sorry.
    I'm sorry your baby is going through this. I know it sounds small but Jesus it's just not fair. I'm in tears reading this.

    Why can't our babies just be babies? I too am sick of it. Sick of seeing him in pain. Sick of seeing his just tough it out.

    Let them think what they want. Your not an asshole. Your doing what is best for your daughter.

    Nothing else matters. No one else matters.

    I hope you find better days to come.