February 9, 2016

When Doctors Make Mistakes

Sick_girl

A question in a Facebook group and the memory of that doctor and what she did, or more accurately—did not do—came flooding back. And now I'm raging.

Unlike another doctor in our past whose negligence also put our daughter's life in jeopardy, I never got closure with this doctor.

Let me back up.

When our daughter was a few months old we knew something was wrong. In addition to her missing key developmental milestones, she stopped feeding. This photo was taken around the time Avery started refusing to nurse. These babies are the same age. Avery is the one in pink. Obviously. She was so tiny in comparison. Little peanut.

This picture makes me so sad. But also, it makes me laugh. Hello, Andrew on the right?

Breastfeeding was a struggle from day one. Poor suck, tongue tied, persistent thrush—these were the reasons given at the breastfeeding clinic. We eventually switched to bottle feeding hoping it would help. It didn't. Babies are supposed to grow and thrive. Avery was neither growing nor thriving. She was fading away and we begged for help.

Our family doctor who was on our side from the beginning sent us to see a well respected pediatrician.

Without even taking Avery out of her car seat to examine her, this doctor who was supposed to help us told me she was 'fine.' He dismissed my legitimate concern as dramatic postpartum nonsense and shooed me away. I cried all the way home.

Three years later when we met again in a hospital emergency room (he was the pediatric doctor on call the night Avery had her second life threatening seizure) I reminded him of what he had said and what we had been through. I was shocked by his humble and apologetic reaction. People, doctors included, make mistakes. Hanging onto the resentment I felt toward him wasn't healthy. Hearing him admit his mistake helped me inch closer to letting it go.

We were sent to see another pediatrician who came highly recommended. I hadn't heard her name in years until I saw her mentioned in the comments under this Facebook post last night. 


This family's doctor made a mistake. And they have every right to seek out a new doctor. Of the 24 comments on her post, half sing the praises of a particular doctor. Glowing recommendations like; "She's fabulous, amazing, I love her, she saved my son's life..."

This doctor sounds like a dream come true. But if we had followed her advice, our child certainly would have died. Thankfully I didn't follow her advice.


I took Avery to see this new doctor as soon as we could get an appointment. She seemed kind and knowledgeable and I felt hopeful. I shared my daughter's history and explained our concerns, adding that on top of everything else her urine had developed a foul odor.

She told me not to worry and sent me to the hospital to pick up a urine collection bag. "How am I supposed to collect urine from an infant who is dehydrated?" I asked her. She told me it wouldn't be a problem.

So I dragged my sick, weak, baby to a germ infested hospital, collected the bag, took it home and struggled to collect a pathetic amount of pee, hoped it was enough, and drove it back to the hospital to drop it off for testing.


A few days later Avery took a turn for the worst. She was listless and grey. We returned to see this doctor after I begged the receptionist to fit us in. She was cold and clearly annoyed by my tears. Seriously, why would you hire a person who has zero compassion or people skills to work with families, some who might be nervous, or worried, or stressed??

When we saw the doctor the pee test hadn't come back yet. I remember how much my hands shook while I told the doctor how frightened my husband and I were.

She suggested giving our seven month old baby, who refused essentially all food and liquids, cheesecake and cream brulee. I am completely serious. This was her advice. That, and "Let's just wait and see."

Wait and see?

Wait and see how long it will take for her to starve to death? Wait and see how long it will be before her kidneys shut down from dehydration? We would not wait and see. 

I drove straight home from her office, packed an overnight bag, and called my husband to tell him to meet us downtown at Sick Kids Hospital Emergency.

Avery was admitted immediately. The doctor who examined her asked where we had been. He said, "This is a very sick child. You should have been here a long time ago."

Avery was later transferred to a hospital closer to home. This is where we learned about her chromosome deletion disorder. And this is where everything we had been through started to make sense.


When I called home for messages there was an angry voicemail from that nasty receptionist at the doctor's office. We had missed our follow up appointment and would be charged. She added, "The doctor needs to see you. Your daughter has a severe urinary tract infection. Call us immediately."

Oh, I called back. From the hospital where we would end up living for over a month. I tried to tell the receptionist how upset and angry we were. But I mostly just sobbed and couldn't get my message across the way I wanted to.

We learned how to use a feeding tube to keep Avery fed and hydrated. We started teaching her to sign, and took her for physical therapy, and we found a new pediatrician who we learned to trust. We were so busy learning how to help our girl to grow and thrive that I never went back to see that doctor to tell her how she failed us. I essentially forgot all about her.

Until I saw her name in those comments and it all came rushing back.

I didn't comment on the Facebook post. My instinct was to share our story with the group to warn them to stay clear of that doctor. But instead I said nothing.

This was OUR experience with this doctor. Clearly others think she's great. 

Even the best doctors make mistakes—they misdiagnose symptoms, they prescribe the wrong dose of meds, they tell patients to wait it out. It can happen, even when your doctor has the best of intentions.

I guess the bottom line is that we need to always be vigilant—do the research (even if it's scary), ask the questions, question everything, seek a second opinion, and most importantly, follow our gut. 

What will I do if I should meet this doctor again? Will I tell her what we endured? Probably. Because she should know. I mean, cheesecake and creme brulee? Come on. And asking a clearly distraught and frightened parent to wait and do nothing? That is absolutely ridiculous!

So it seems I have a more residual anger than I thought...


The conversation about this post is on Facebook HERE.

February 7, 2016

Superbowl Sunday Super Easy Snack—Football Brownie Bites


Lazy? Busy? Baking Challenged? I'm all three, so I made these super easy, super fast, super tasty, Superbowl Sunday snacks to bring to a party tonight.

1. Buy a container of Two-Bite Brownies. 
2. Wash hands. Obvi. Squash round brownies into oblong football (close enough) shapes. 
3. Pipe on white icing for laces. 

Ta dah! Go Eagles! Or whoever is playing. I don't actually follow football, but any excuse for a party...and brownies...

February 4, 2016

Carcinophopia


Did you know today is World Cancer Day? I wasn't familiar with this event until I saw it on Twitter this morning.

Or maybe I did know but chose to stuff it deep down into that place where I keep all my fears about 'it'. And I should tell you, the place is full. It's busting at the seams because talk of 'it' is everywhere.

You can probably name at least ten people in your life who've been diagnosed. And like me, you may have lost somebody close to you because of it. (I try to not directly refer to 'it' by name if I can help it. It's easier to ignore when it's unacknowledged.)

I'm obviously afraid of it. Unlike a fear of sharks or getting swallowed by a sink hole, this disease is a more statistically plausible threat.

We're a pretty Cancer Phobic society—focused on a killer that may or may not ever come for us. Realistically we're more likely to die of heart disease in North America than from cancer and yet we hyperfixate on the Big C.

Is it any wonder so many of us suffer from Carcinophobia though?


Cancer is in the news every day—this person has been diagnosed, that celebrity lost their battle, plastics will cause it, GMOs will accelerate it, that chemical will trigger it, these foods will cure it. It's always there. News of it is always there, swirling around us.

There are always fundraisers and campaigns and events and dedicated days.... like"World Cancer Day."

We all know people who have it.

Or had it.

{Coincidentally, this is the ad currently running in the sidebar of my blog as I'm writing this post.}


I'm curious (but nervous to actually do the research)—have cancer cases increased? Or is this as a result of being in my mid forties? As we age we often succumb to illness, so maybe it's the company I keep? The fact is my peer group is heading into our sickly years and it's possible I just never took much notice until 'it' starting hitting closer to home.

Or maybe we simply hear about it more than ever because our connections across the internet and through the media make it that way?

If you're a doctor or a scientific researcher and you know the answer, please share. Wait, only if you tell that cancer is no more prevalent today than it was thirty years ago. It's just that we didn't talk about it back then. You could also add something about how incredibly close we are to a cure.

Obviously worrying about cancer isn't going to prevent me from getting it. In fact, the stress will take a toll. Stress is toxic. Cancer feeds on toxic. Oh god.

So smart healthy people....
Live life one day at a time.
Are grateful for their health. 
Accept that it's ultimately out of their control. 
Try not to worry about the future and instead focus on right now. 

I understand all of that. And I do what I can to make healthy choices every day. Obviously I don't want cancer. The illness itself and the treatment is horrendous. But that's not why I worry.

It's about my kids—mostly my daughter. Avery has special needs and she will always be dependent on us to look after her. If something happens to me, how will she cope?

Of course her dad and her brother and our extended family and loving friends will take excellent care of her. She will be looked after and she will be loved. I know that.

But I am Avery's person. She has lots of people, but I'm her number one. We are an inseparable duo.

When Avery's Grandie died, she was shattered. She and my mother in-law also had a very special bond. It's been nearly two years since she passed away but Avery still talks to the framed picture of her every day. It's sweet but incredibly sad to hear her telling her grandmother about her cat or about how she joined the school choir and the Friendship Club. And when she sings to her, I can't even...


A few weeks ago as we drove to dance class, we listened to classical music in the car to get in a ballet frame of mind. I was startled when I looked in the rear view mirror and saw tears pouring down Avery's cheeks. It scared me. When I asked her what was wrong she said, "This music makes me sad. I miss my Grandie so much. I want her to come back."

Two years and the pain is still there. 

This is a child who is missing DNA crucial to the formation of memories. She forgets most people's names. She forgets what number comes after eighteen. She forgets the name of fruits and vegetables, except for the ones she really likes. She forgets so many things, but the connections she has with certain people, she never forgets. That's the thing about Avery, if she connects with you, that's it. You're in for life.

She are I are connected. So I can't leave her. At least not too soon. And that's why I'm terrified of the dark scary things that could take me away from her.

The conversation about this post is on Facebook over HERE


What's The Time Limit On Grief? 
Pink Balloon—Helping Kids Deal With Grief
Lessons Learned From Loss 
Levity During Loss 

January 31, 2016

Stay Back! Hormone Zone Ahead


My hormones are wonky. Not in a cute, "Aw, she tears up at the idea of baby bunnies" way, but in a "Settle down shrew. I AM NOT breathing too loud, I'm just... breathing! Jesus." sort of way.

Apparently a few days a month Lisa leaves the building and a satanic, salt sucking, chocolate guzzlin' troll takes her place.

Last night for example, I was having a pleasant discussion with my spouse. One minute we were two adults chatting, laughing even—the next, the poor man said something I didn't agree with so I spun on my heel and whipped opened the cupboard and grabbed a package of chocolate chips. I shoved a mittful into my mouth and fumed until I was ready to continue the conversion.

What hell is this?

If this is perimenopause, what is full-blown menopause going to be like? I am sincerely concerned.

I've had this discussion with hordes of girlfriends and we're all on the same page. Collectively we're a happy, gregarious group who upon occasion and somewhat dependent upon the tides, can suddenly transform into something else—something dark and startlingly emotional.

Add in a dose of insomnia (also associated with whacky hormones) and resulting sleep deprivation and it's... unpleasant.

If you Googled, "how to deal with PMS" or "curing perimenopausal symptoms" or "help for menses monsters aka Menstrosities" and you ended up here, I'm sorry but I can't help you. I can barely help myself.

I don't have the answers, but I can offer you this: when I sleep well, eat well (laying off the salty snacks, heavy carbs and processed crap) and exercise consistently, the nasty symptoms tend to diminish. They don't go away completely, but I'm definitely more sweet than sour.

In theory, this personality affliction should be an easy fix.

But here's the issue: when fluctuating hormones f*ck with your sleep (plus throw in a persistent case of PTSD) the other things—the triad of eating, exercise and meditative relaxation all goes to hell.

So I guess the only thing I can say is BE AWARE. Silently acknowledge what is happening to whenever you feel yourself being:

a) a shrew
b) unreasonably emotional or irrational
c) judgmental
d) generally awful
e) insert your own unattractive personality disorder here _________.

Remind yourself, "I am a nice person. This is not me. I have been temporarily been possessed by the devil."

I consider myself to be a kind and gentle wife and mother. So when I snap at my husband for slurping his tea or smacking his or I glare at my son for smacking his lips when he eats, I feel horrible about it afterwards. There's a real disconnect between me and this snappy grouch who is irritated by the smallest things. I don't care for Snappy Lisa. When I feel her taking over I try to step away to take a few deep breaths, or voluntarily segregate myself from my loved ones for a few minutes to protect them from my irrational wrath.

Like I said, I don't have the answers. Do you? Because if you do, I'd love it if you could share before my family puts me on an iceflow and pushes me out to sea.



The conversation about this post is on Facebook right HERE.

http://www.foreverinmomgenes.com/2015/09/why-ive-removed-comment-section-from-my.html

January 9, 2016

Take Heed Neighbour! Don't Get Burned!


I love snuggling up beside our gas fireplace during the winter. It's the coziest. However, ever since the incident when our daughter backed up into the hot glass and scorched her leg, the unit has sat cold and flameless.

Avery is now nine and she understands the concept of "danger" and "don't touch that" and "it's hot" so it's safe to turn the gas back on and fire it up!

When we flipped the switch this season, nothing happened. It's was all very anti-climatic.
 
My husband examined the fireplace innards which involved head scratching, random grunting noises, followed by some cursing—fun to watch, but not effective in terms of igniting my flame. My man is a lot of awesome things. A fireplace repairman is not one of them.

On this quest for fire I hired a company take a look. The service guy arrived promptly and was polite and seemed efficient.

He removed a decade's worth of nasty spider webs and crud from the fireplace and cleaned the glass on the door. I paid for him to do this not knowing how easy it is to do myself. Dammit.

He claimed the pilot assembly part was corroded and pointed to where the flame was struggling to ignite.


He searched the database for the part and sent me a quote. A HEFTY quote. The amount was shocking so I emailed the manager at the company directly and asked for more details—including a break down of the cost. He sent me this:


So $630.50 on top of the $200.00 for the original service/cleaning?! A total burn if you ask me.

I asked the company to send me the serial number for the part and I gave this info to a new company who came back to say the part was for a propane unit. Propane? It's not 1962. We don't use propane, we use natural gas.

So Paradigm Venture (a local company who I would recommend without hesitation) sent out a heating and cooling expert who determined within minutes that the pilot assembly was in perfect working order—NOT corroded AT ALL. The issue was a spider's nest plugging the gas line. *um shriek* This is what happens when you keep your fireplace off for several years—Charlotte and her brood move in.

Once removed, the gas flowed and the problem was solved. For $150.00 thankyouverymuch.

So like our cavepeople ancestors before us, we finally succeeded in our quest for fire. We got our happy ending BUT...

....it's infuriating to me that the original company tried to take us for a ride. So not cool. Or hot. Bottom line, always always always trust your gut, do the research, ask ALL the questions, and if possible, shop around. 

The conversation about this post is on Facebook right HERE.

www.operationchristmaschild.ca