Emilie: The Full Story June 2011

Okay, so I've been avoiding this, but here's the longer version of events for the past week for those of you that have been following:

Monday, June 20th
We had a doctor's appointment at Emilie's regular medical Opthamologist.  She did awesome, we went in and did some vision checks where she looked at pictures and showed off her intelligence, etc...

Then the fun part happens, where they use an instrument to check Emilie's eye pressure.  The instruments have gotten even smaller and less invasive, so for the first time ever, we were able to check her eye pressure without having to put her under anesthesia.  Good news, pressure in right eye was normal.  Bad news, pressure in left eye was too high, 35, when it should be below 20.  The doctor immediately wanted to schedule surgery for some time early next week.  He doesn't do the surgery, there's only one doctor in the state that does these types of surgeries for Emilie.  This doctor can do an evaluation and he's the one that measures her eyes for glasses, so he said that we would do an "EUA" to make sure the office pressures were accurate and also measure her eyes for glasses.  As long as her pressures were high in the left eye, we would laser the left eye. 

Why laser?  The thought is that the eye has pressures that are too high because either the eye over produces fluid or because the eye doesn't drain well.  We have already done three surgeries to help the eye drain better, so lasering the eye should stop it from producing fluid. 

The curve ball: Our Vegas vacation was planned for next week, so we start to cancel vacation plans to be able to have surgery. 

Tuesday, June 21st
We call the surgeon's office and confirm that they will be able to do the surgery one week before vacation, whew.  We call the medical Opthamologist office and get a strange voicemail to our phone.  This message says that they aren't sure both doctors will be there.  Stupidly, we assume this secretary doesn't know what she's talking about and prep for surgery in the morning. 

Wednesday, June 22nd
I wonder if these dates are right, LOL.  I have no idea what week in June we are in...

We arrive to the surgery center and the first thing given to me is a consent form to Laser Em's left eye.  I state, in what I believe is a non-chalant tone, that I thought we were checking her pressures again before agreeing to surgery. 

As a side note, you don't say "bomb" on a plane and apparently you don't say "no" to a consent form in a surgery center.  People start shuffling nervously around asking me why I refuse to consent.  I explain again that I want Emilie's pressures to be checked first, which is when I then ask where Em's medical doctor is. 

Medical doctor? Who's that? Exercise Caution?  Why? Berb berb berb...

So they put in a phone call to that doc.  He responds with "nah, just laser the eye."  I respond with "no, check the pressure again."  More panic and anger ensues. 

Let me take this moment in an already lengthy post to mention why I demand this.  In January Emilie's left eye was bulging.  We took her to the doctor who took Emilie's pressure in the office and it was 50+.  We rush her into the OR the next morning to laser the eye, and they put her under anesthesia.  When they do the evaluation, her left eye pressure is 20.  The deal with eye pressure is that it can spike anytime pressure is in the head or eye, so squirming, screaming, fidgeting, or a combination of all 3 can mess with the pressures.  Needless to say, that day both the surgeon and the medical doc were there, and both of them metaphorically patted us on the butts, told us we were over-reacting and sent us home without doing anything. 

Having just experienced this, the last thing I want to do is start cutting on Emilie's eye without an evaluation.  The nurse comes in and assures me that they will check the eye pressure before they decide to cut, and I consent.  But now, the anesthesiologist is concerned because in my ranting I also mentioned that her eyes have to be measured for glasses (you know, she's too young to read an eye chart, so they measure the size of her eyes to determine near or farsightedness) and the anesthesiologist doesn't want Emilie under anesthesia more than once in a month if we can avoid it, so they call the medical doctor again.  Oops.  He forgot about that and consents to rush over. 

Rushing, btw, takes an hour.  So Emilie is approaching 20 hours without food and 8 without fluid, she is, how you say, irate? Yeah, that'll cover it.  Btw, screaming children make no one comfortable. 

Doc's here, rush, rush, rush.  Everyone's nervous and the doc's are both angry b/c both of them have been thrown off of their schedules, so they want to communicate with us in short terse sentences that don't really elaborate post-operative care.  Bottom line, as you saw, her eye was operated on and yes, her glasses precription changed. 

After a nice and demeaning post-op conversation that amounted to "I should just trust them when they say operate" they send us home. 

Here's where my anger begins.  I know doctor's are busy and arrogant and assume all of us are over protective fools, I'll even concede that I've had my days where I deal with parents and marginalize their reactions as over-reactions, but the way we were treated during recovery was unacceptable.  Kasey and I had to clarify three times the directions for post-operative care because doctors were speaking too quickly (c'mon, you know it's too fast if we can't comprehend it), we were left with recovery nurses who held Emilie less than 30 minutes (against protocol) who didn't wait for her to drink any fluids (also against protocol) and who still hadn't quit screaming from the time she woke up from the anesthesia, common for kids, but also HIGHLY AGAINST PROTOCOL.  Emilie should have never been allowed to leave recovery having gained no composure and having consumed no fluids. 

So we get home.  Don't be suprised, but she starts throwing up.  An hour or so later, this finally ends and she sleeps the rest of this day off.

Today, whatever day it is
Some time during the night last night, Emilie started throwing up. She hasn't eaten well and she hasn't felt well since the surgery.  When she throws up 6 times in about 2 hours, we start debating who to call.  Finally we call the emergency number on the post op orders...mistake. 

We get the weekend on-call doctor, who hasn't ever seen Emilie.  And what everyone has to keep in mind is that Emilie's condition is rare.  There have only been 2 other cases in the last 10, well now 12 years of congenital glaucoma in the state of Oklahoma.  So even the eye doctors haven't seen it.  When we get there this doctor panics.  She wants to put dye in Emilie's eyes, she wants to dialate Emilie's eyes, she wants to take pressure, and finally after 20 minutes of this circuis, Kasey and I remind her that we are there because we are concerned about Emilie's vomiting, not her eye.  The doctor says we probably need to go to the ER for the vomiting but that she is really concerned about Emilie's left eye, as it is really cloudy. 

Okay.  So we try to be patient and explain to the doc that Emilie's eye has always been this cloudy and she really does have a pupil that doesn't dilate or respond to light changes, and that this is all nothing new, but this doctor, of course, doesn't want to believe us because she's never seen this in a child and is concerned that something has gone terribly wrong.  So again, I get to play stubborn parent and refuse to allow her to continue touching an eye of a vomiting child less than 24 hours after it has been operated on.  She isn't satisfied and insists on calling her medical eye doctor.  This guy must be loving us.  Bad news, her eye pressure in the left eye is still 31, so she does need some meds for the eye, but we still haven't addressed the vomiting.  She tells us to go to the ER, at this point, Emilie has quit vomiting and is just passing out in our arms.

We resolved to go home and let her sleep for a few hours before we tackle another ER and another barrage of doctors who are scared to treat Emilie because of her condition. 

After a little more medication this afternoon Emilie woke up and started asking for french fries and a hamburger.  She ate it and kept it down and wanted to go play with her sister.  Whatever effects the anesthesia had on her must have finally worn off because this evening, even though her eye looks substantially worse, she was up and running laps and playing like a kid. 

If you were patient enough to read all of this, thank you.  Sometimes, as a parent, we have to vent anger.  I know Kasey and my instincts are right, and I know that the doctors in charge of Emilie are capable and willing, but I also know they are human.  This week it was their turn to make the mistakes regarding coordination of what was best for Emilie, and that's why Kasey and I had to step in, but if you've ever been there you know, there is nothing more scary than questioning the authority of a doctor.  There was a time in this world when, as patients, we treated doctors like demi-gods and that time has passed.  We know that they make mistakes, I just pray our relationship hasn't been too terribly damaged by the battles we fought this week.  I even know too that the recovery room isn't used to young patients, Emilie didn't have this procedure at Children's hospital, she did it at the specialty clinic, and I know those nurses are used to dealing with older adults, but if they cannot maintian a high level of care for Emilie, then we will do battle again when we visit them in three months. 

Thanks again for reading, the days surely get better from here!


bad shoe guy said...

Kayna, Jacey, whatever your hybrid name is, I remember when my dad was in the hospital forever and everything in his body went wrong. The doctors were so focused on the fact that they'd never dealt with anything like what they were seeing that they didn't communicate well with us or each other, so we had to get a doctor family member to coordinate care and communicate with the rest of us exactly what the hell was going on. And this was all when he was in the same hospital and the same room with the same nursing staff, etc. I can't imagine what it's like when she's moving between parts of the hospital and having different doctors take charge. Stay strong and keep making them tell you what they're doing and consult with one another. Thinking of the four of you.

Ashley said...

Oh, good grief! I am so sorry you all have been battling all this. You do have to fight for your kids and trust your instincts, and I'm proud of you for battling the doctors and nurses. Go team Harrison!

Do you still get to go on vacation?

Thanks for the update. I have been thinking about you all a ton! Let's get together soon.

NacyNisse said...

God surely gave this special baby to the right parents. Never, ever, ever give up advocating quality care for your little one. Good doctors KNOW that parents know their children best. The best doctors will even admit it. :) Love and Hugs and Prayers for all of you!

Heather said...

Hi I’m Heather! Please email me when you get a chance! HeatherVonsj(at)gmail(dot)com

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