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November 9, 2008

Advocates aren't born, they're created

Written by PeytonsMom

I’ve known for a long time that when it comes to my daughter and hospital staff, I can get fierce!  I think every parent who has had a child spend time in the hospital, and especially those who spend considerable time inpatient, has had to go toe-to-toe with someone in the medical field.

I’ve had words with a doctor who chose to poo-poo a particular concern, I’ve learned that a grumpy nurse isn’t something I HAVE to deal with, I’ve even scared the crud out of a student nurse who tried to use my daughter as a test case to better her port-accessing skills.

I’ve learned to stand up for my daughter and her needs, I am her number one advocate and I take that role seriously.

I didn’t realize that role would overflow to other family members.

Friday night I got the news that my mother had a pulmonary embolism, a life critical condition stemming from a leg injury.  She was in the hospital, she had clots in her leg and in her lungs, her life was very much in danger.  I packed up my kids and drove three hours to be at her bedside, there was nowhere more important to be than by her side.

At one point in the day we got the disturbing news that my sister had called the hospital and spoken with my mother’s nurse.  My sister called me in a flurry because the nurse had told her that my mother was fine, doing well, only had one clot in her leg and whyareyousoworried?

Oh HAI! ME?  I’m the crazy daughter right here.

I stomped down to the nurse’s station and made my case very clear.

I never raised my voice. I didn’t have to.  And I truly believe that there is very rarely…I won’t ever say NEVER…a reason to get ugly.

I started with my very heartfelt explanation that I respect nurses and I understand exactly how busy they are…my mom WAS one, for Pete’s sake.  I shared how WELL I understand the hospital as a “professional hospital mom” and how I have certain needs that have to be met for me to feel confident in the care that my loved one receives.  I made her pull my mom’s chart and go over her CT scans with me, to ensure the correct diagnosis (which WAS multiple pulmonary embolisms) and to make sure that she understood the severity of what she’d one.

I explained my concern that as my mother’s nurse for the entire day, I was completely upset to find out that she didn’t even take the time to KNOW what was wrong with my mother.  How could she possibly monitor my mom or be on the lookout for critical symptoms if she didn’t even know what she was supposed to be looking for?   I wanted her to be vitally aware of my mother’s every change so that she can see if something starts to go wrong. What kind of pass-down report could she give the next nurse when she has no idea what is going on with mom’s body?

It scared me.  Profoundly.

Because I know SQUAT about pulmonary embolisms and I need to know that THEY know what they’re doing.

But what I do know is how to be my mother’s advocate. I gave her a list of thing she could do to make life easier for all of us: letting us know test results without making us chase her down, writing things down for my mom to help her remember since she’s so tired she can barely remember her own name, making sure prescriptions were already ordered for pain meds, sleep meds, anything she could possibly need, so that Mom wouldn’t have to suffer while waiting on the doctor to get on the phone.

The nurse apologized profusely, she was genuinely sorry and understood the gravity of her error.  She and I had a serious meeting of the minds on how we could work together to help my mom, and while I know she made a mistake of epic proportion, she was an excellent nurse in her desire to help and care.  I left the hospital knowing that I’d done everything I possibly could to make my mom’s experience as a patient as easy as it could be, everything else was in the capable hands of the doctors and nurses.

I wish I hadn’t had to spend weeks and months of my life by Peyton’s side at the hospital, but today? I was thankful for the knowledge that made me a warrior for my mom.

You can also find me at Hope4Peyton, The Mayhew Review and Twitter, you should come by, it's nice…we have cookies! Feel free to email me at Anissa.Mayhew (at) gmail (dot )com.

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7 Comments on Advocates aren't born, they're created »

November 9, 2008
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#1 - I'm not ready | Hope4Peyton @ 2:30 pm

[...] Today, I wrote at 5 Minutes For Special Needs about how being an advocate for Peyton has helped me help my [...]

#2 - ICU nurse for 5 years @ 3:08 pm

I found this post interesting. As an experienced ICU nurse I can tell you that regardless of whether your mother had one pulmonary emoboli or multiple the treatment would be the same so that fact is somewhat irrevelant. I understand your frustration, however, with the quality of care that people sometimes recieve. More often than not, however, the problem comes from nurses who are unable to care for the number of patients they are assigned to. I can promise you that it is impossible in a 12 hour shift to know every minute detail on 8 patients. The nurse to patient ratio needs to change and that is something that needs to go through hospital administration. Until that changes you will recieve the same care which is unfortunate. I would suggest you make your voice heard to the powers that be.

And I hope your sister understands it now too!

#4 - Barbara @ 5:35 pm

The part I want to emphasize is from what the ICU nurse said above - the system has to change. Those are the fewest words for meaning the most to the most people. And the least likely to happen in the near future.

Every role I play in my life has contributed to my opinions about the healthcare in the US (the see the list of posts on my blog).

Potentially, a critical care or specialty unit is only place in any hospital where real care is consistently provided.

In all other places in hospitals a great deal of care and demands for care must come from the patient and the their family. Those without the ability or family are left to the consequences of circumstances or the minimum of services.

My apologies for the rant, but I think I will post this anyway. PeytonsMom, do not even think that medical care will improve by any moniker called universal care. It will be more of the same, with fewer escape routes for anyone who knows better how to nurse or how a nurse should nurse.

November 10, 2008

#5 - Rickismom @ 2:15 am

As a nurse, I agree totally with the opinion that there has to be a change in patient-nurse ratio. Can anyone understand how scarey it is to work on an overcrowded floor, and if you make a mistake, it can be tragic?

#6 - gail @ 4:45 pm

i haven't had to be a warrior mom, in the medical sense, but i have much admiration for you and other moms who have had to travel that road. every time i do have to go to the hospital and be with my son or my hubby i always wish i knew what to ask for. thankfully we have had good outcomes, and i agree with the post above that mentioned that the ICU or special unit gives the best care. my husband was in the ICU at a trauma hospital and had great 24/7 care. good thing as he tried to "flatline" several times! once he was transferred to the main floor it was a nightmare. thankfully he wasn't there very long before being released to a rehab hospital, which again, was much better.

December 17, 2008

#7 - Heidi @ ggip @ 10:54 am

I agree that it is so important to BE THERE at the hospital (or to call all the time) to advocate. Even in the best children's hospital in the nation (which I love, btw) there were small errors made or things that we, as parents, were able to see that the staff didn't.

Also, I wish everyone knew that they have the right to see their chart (or your child's chart) whenever you want to.

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