Monday, March 30, 2009

Pictures can be deceiving .....



.... especially these ones.These were taken last night when Caitlin and Danny stopped by on their way back to San Diego.Zoey was so darn cute.She really put on a show for them.However,there was much more going on than meets the eye.As I have mentioned in a few posts,Zoey has been battling nasty allergies while inpatient and what is now,finally,being acknowledged as a a cold.Hello??? I have been trying to tell someone,anyone who would listen,that there was so much more going on.But as usual,I'm just the parent,no degree and therefore have no idea what I am talking about.Oh sure,to my face I am told I am my child's best advocate and a partner in her care but the bottom line,behind closed doors,I know nothing.Or at least nothing they want to hear.So today,after documenting ALL day long the downward spiral of my daughters health,maybe now someone will listen.And trust me,they will listen from now on.I just received a call from Mark and Zoey has Pneumonia.Yep,after begging for someone to do something for my child who was coughing up a lung,along with her feedings,we have confirmed Pneumonia .... not allergies.Well,sure glad they went to medical school and not me,the ever present, overreacting, nagging mother.What do I know?Now what about the parents who obediently listen to those they have put their complete faith in caring for their child,no questions asked and in the case of our hospital,with an eighty percent Hispanic population,there comes a major language barrier.What about them?Mad does not even come close to expressing how I am feeling.Disappointed beyond belief and if anyone out there knows me,this does not end here.Tomorrow another 4th floor rampage.This is a matter of life and death.No exaggeration. No dramatization.Plain and simple truth.We insisted they do a swab for RSV.Not that it does us any good at this point but what about the countless others that have come in contact with Zoey over the last say,week and a half?I would have thought that the moment they saw Zoey had a cough and runny nose that they would do whatever was in their power to prevent a spread of a potentially life threatening virus to run through our floor.Simple proactive response not reactive.Let us not forget the NORO virus that shut our floor down at the first of the year due to blatant mishandling of initially infected children.So tonight I sit here thinking what good did it do me,or rather and more importantly do Zoey,to keep the medical staff, entrusted to care for Zoey,up to date with changes I saw in her?What about the children that do not have their parents there?I have the benefit of having had Zoey born into crisis and basically revolving from one thing to another over the last 2 years and I know her like the back of my hand.what about parents who do not have the experience and the wherewithal to see subtle signs?Negligent care by medical personnel costs lives.I will be darned if I will stand by and allow anything to happen to this precious child after her fight for life over the last two years.Especially due to lazy,sub par medical care.Sorry folks but I am beyond, beyond.An angel was watching over Miss Zoey today,along with some divine intervention.You see this morning when labs were drawn Zoeys ANC went up instead of down.Not the right direction of course but in this case,the presence of Neutrophils allowed the Pneumonia to be seen.If she were neutropenic then it would not have been seen and we would be shooting in the dark with various big gun antibiotics.Tonight the prayers need to be flowing.Zoey needs to kick this thing,quickly.This round is already taking a lot out of her and the road is bound to be long until we see daylight to round 4.Scared?Not really.Frustrated?More than you could ever possibly know.Most important thing now however is Zoey.I will try tonight to flip my frustration to some positive vibes and powerful prayers.It's midnight and I am going to turn into a pumpkin so it is bed for me.Update tomorrow.

31 comments:

Mark said...

uh-oh.....watch out! :)
Well said dear. Yet another sign that Zoey IS being watched over.

JUST A MOM said...

Praying here...ALWAYS! I agree with Mark, watch out floor 4!!!

Alison and Gang

Mia hat eins mehr! said...

Ahh, isn`t it always the same. Stupid moms on the floor- in their opinion. I am so annoyed of these people who should do their work so much better and totally understand your anger and frustration.

It`s a nice thought that maybe Mia had an eye on Zoey. I definately know that little Mia takes care of others, I was told so. She visited a far away friend, who sadly never met Mia in her life, in a dream and gave her some hope and peace.

I think of you guys so often and pray for you all, as always.

Love,
Claudia

grammygwen said...

Praying for Zoey and her family.

stephanie said...

Unbelievable, thank God you are able to be with Zoey all the time.I think it hurts they're pride a little(medical field) to have a parent actually know the patient better than they do.Imagine that!You're her best doctor. You kmow, when I was pregnant with Emilia, I over heard(imagine that)a conversation my doctor was having with another doctor about me!I was referred to as a challenging patient because I asked a lot of questions and didn't always settle for the answer I was given.
It wasn't meant to be a compliment but I took it as one, it meant I was doing my job as a parent.Challenge them Heather, every day! All our love and prayers. Big hugs to Zoey, Stephanie

Anonymous said...

Oh my - you go mommy! Zoey, a special extra prayer for your speedy recovery from this latest hospital mishap!

PS You're right Heather - one would never know Zoey is feeling additional sickness from the photos of her with Caitlin & Danny. Amazing child to say the least....

Love and hugs to everyone

Bluebelle

Anonymous said...

Wow, Zoey looks fantastic in those pictures. I would never imagine that she were so sick.

Oh do I remember having to rant and rave at doctors. We almost lost Carly to a blood infection during one of our hospital stays. Her brain was swelling and causing limpness of her left arm. 22 hrs later, after I threatend to remove her IV's and head to the ER, did we finally get action.

It's sad, but in the end...we mom's do have to scream at the top of our lungs every now and then just to get those doctors with degree's to listen! Go gettem Heather. You are the best advocate for Zoey.

Our prayers are with Zoey and the rest of your family during this rough round.

Prayers,
Joany

The VW's said...

POOR ZOEY!!! I'll be praying hard!

I can relate only too well about hospital incompetence! It's infuriating! We are only moms and know nothing! HA!

Gavin would be doing so much more today than he is, if not for such incompetance! Keep fighting for Zoey and all the children who can't do it for themselves!

Hope said...

I really hate that doctors don't take mothers seriously. We know our children better than anyone. I'm praying for Zoey. As alway, I think she's beautiful.

Anonymous said...

Hold on....a fierce tornado is about to land on the 4th floor. I really can't imagine that they would dismiss a mothers intuition when all the signs were there that something was obviously going on. They must know you by now and know that you know your daughter better than yourself. I hope you got some sleep last night but regardless, your adrenaline will carry you through the day I am sure. Extra prayers today for Zoey and the whole 4th floor.
kathleen

datri said...

I'm just stunned. Continued prayers.

Anonymous said...

OK warrior mom, something big will change at CHLA by the end of the day. You are amazing, and thanks to your persistence, this has been caught and cornered. Zoey will bounce back from this crud. Sending you positive energy, thoughts, love, strength, and prayers in abundance. Keep us posted, xo Christi Harman

Kleidy said...

BEAUTIFUL ZOEY GRACE, you are almost there. I know you can do this, keep on fighting little warrior. Sending you lots of LOVE and HEALING ENERGY your way, every day ~

Sending prayers of PEACE and STRENGTH to all of you ~

Sweet Angel said...

I know just what you mean. I have had on several occasions questioned the nurses (not so much the docs). And as usuall, I was always right. As I think back, whenever my husband says a prayer for Kristen, He ALWAYS says, "Please Let Polly know what Kristen needs and what is best for her." I know our special angels are being watched over and so are we as mothers. I learned early on...always, always, always speak up.

Lacey said...

Don't you love how Dr.'s think they know more than us because they went to medical school. Whatever. You go girl, do what needs to be done.

Anonymous said...

Heather -
Sending you extra prayers for strength today. I know that you'll keep on fighting for the little warrior Zoey! My heart goes out to you. I'll be praying hard all day. Keep us posted. Christy Pinuelas

Michelle said...

I share your anger...and I am SO sorry they didn't listen to you. You fight hard today for her as I know you will. Times like these I WISH we were closer, because I would be right there with you fighting, by your side. i will be there in spirit lending any strength I have left this week. We are praying hard for Zoey this week...He will listen, He is listening. Love you my dear friend very very much! Please call if you need to vent...please!

Googsmom said...

You are the best momma and MOMMAS KNOW BEST!!!!! {{{{HUGS}}}} and continued Prayers for your family.

Jeana said...

I found your blog some how yesterday and just wanted to say thank you. I just recently found out that my baby girl will have Down Syndrome. She is due in August. Looking over your blog has really helped to bring me hope and peace. I know I can do this, because amazing people like you are doing it too. Today, you are my "something solid to stand on" like in the quote on the top of your blog. I will pray for your little girl, thank you for sharing your story.

Anonymous said...

you are not alone in your frustrations with the medical
staff....i fought with the
nurse at the last er admit and
complained to all afterward...
including our ped about the
way I was treated by ALL when
i told them what treatment my
daughter needed...happens
again they will be hit with a
suit so fast...

Judy said...

Oh Heather~ while I can't imagine what you're going through with princess Zoey...I can totally relate to the Dr. frustration!!!

The sad thing is even many of my friends do not understand how medical professionals make careless mistakes and dismiss maternal concerns. I am known as the crazy mom who tries to tell the Dr's what to do but it's because I had to fight for a year for someone to see my son's small bowel stricture. It is such a helpless and maddening feeling.
You go get em, girl! For all the moms out there that don't know to question their children's Dr's. For all the children out there who are getting sub par care, you go MAKE that hospital listen to you.

God's got your back, girl! Sending you huge hugs and mass amounts of prayers!!!!

xoxo

3saints said...

We've had this happen numerous times when we are on the floor...when we are in the PICU it seems like they are better about it. I'm so sorry that sweet Zoey is so sick!
Thinking of you all!!
Hugs
Kate

MJMILLS said...

Sometimes medical staff disgusts me! People die everyday because of medical "accidents". Im sick of it. Rediculous! A friend of mine, well his mom died while we were teenagers after a routine sinus procedure she had done every year. Guess what???? A nurse forgot to plug in the machine that drained the fluid from her lungs, SHE DIEd because of that mistake! This has got to end now. They need to start listening to parents for goodness sake! UGUGUGUUGHGHGHGHGHHG

Mo said...

Is anything more obnoxious than a doctor who just shines you on when you try to explain something about your child or express concern? You knew something was up and no one listened. That is so infuriating and, in my opinion, bad doctoring.

Whip those doctors/nurses into shape, Heather. For your child and for every child that will pass through the doors of the 4th floor. Plus, Hell raising is cathartic.

scrappy quilter said...

Praying for Zoey...

Carey said...

Oh man. Heather, I've been there. I'm so sorry. The day the health professionals start listening to parents will be a HUGE day for sick children. I wrote many similar posts just a year ago. Pray for her, of course. And you my friend, take a deep breathe, ... and go get'em!

The Eadle Family said...

I would be mad too. Actually, I am mad. My fiancee is really sick. And I mean, REALLY sick. Flu like symptoms, and I am thinking bronicitus, or pneamonia. My kids are sick now too. We went to the clinic, where we waiting almost 2 hours, and the doctor looks partly at the girls and said they were fine, and get this, DIDN'T EVEN LISTEN TO RYAN'S CHEST, and that is where he is having the most problems.

I am so angry about it I plan on writing a letter to our provincial newspaper and ask them to post it in their paper. GRR!

Caitlin said...

I knew her "smoker's cough" wasn't an "allergy" cough.

I would use some choice words on here, but I'll refrain from doing so for the sake of small children and conservative ears.

Also, check this out and make a link to it on your blog...it's a pledge against the "R" word...like a petition, but for the purpose of spreading awareness:

http://r-word.org/

Love,
Cait

Anonymous said...

I just happened on your blog from another blog that I follow, and I wanted to tell you that you have the most adorable daughter I've ever seen. Down's kids are really God's way of showing the rest of us how WE need to act.

God bless you and your family, and please know you are in my prayers.

Christie

Cheri said...

..."Thank you Lord for Zoey's crazy numbers so the pneumonia could be detected..."


Praying tonight for protection for Zoey and all her friends on the 4th floor...

Victoria Strong said...

Oh, NO!!! I am so sorry that this has been added to Zoey's list of trials. You have every right to be angry -- heck, I wouldn't blame you if flames started shooting from your ears when you speak to the head of the floor tomorrow. Ahhh!!! As if fighting for your child's health isn't enough, you have to fight to be heard by medical staff, too. Good luck tomorrow. Thinking of you and sending Zoey BIG germ-free hugs and kisses!