Thursday, March 21, 2013

Lean On Me

Something is weighing heavily on my heart lately and I need to express it. It will not please some of you, but this is the raw me—like it or not! You know when you are in high school and there are those clicky groups…that you are excluded from if you don’t fit the bill?  Well, I feel like I’m part of that group lately….and trying to expand it to others that are in the same boat, but not exactly alike! I feel like that “group” is starting to exclude me because I’m not loyal to them alone.
Rare diseases to me are just that----rare, and many people haven’t heard of them. If I say ugly words like cancer, CP or MS most people know what I mean. What if I say just as ugly words like Alpers Syndrome, Krabbe, MLD, AGS, Leukodystrophy and Mitochondrial disease….would you know what I was talking about?

Would you want to support a 2 year old child suffering from Alpers more than a 2 year old suffering from MLD? Life threatening diseases are real and devastating. If you lose a child from cancer or leukodystrophy...the devastation is the same. It’s a nightmare and heart wrenching—something most people will never and should never understand.
Would you focus your attention on research and support for one rare group or all the children fighting yucky, rare life threatening diseases? Would you raise money in one child’s memory or all the children gone to soon? Most don't know--but many mitochondrial diseases, leukodystrophys, autism and behavior disorders are intertwined.
My beautiful son Ryder passed away 8-22-12, 2 weeks shy of his 3rd birthday from Alpers Syndrome. I LOVE AND MISS HIM beyond your comprehension. My Mom opened a special funds account in Ry’s name: The Ryder Hauer Fund for Rare Childhood Disorders. This fund supports Dr. Narayanan and TGen 100% on their quest to help children with ANY rare childhood disorder. My heart expands to children with mitochondrial disease, leukodystrophy, cancer, blood disorders…..on and on—EVERY CHILD deserves a lifetime no matter what “label” they are given. I wish all families going through the heartache of watching their child suffer—a supportive community, peace of mind and much love to surround them in their most trying times.

I am here to help any family experiencing a loss, unknown diagnosis, life-threatening diagnosis or just someone to lean on! Life is hard, but with God and each other we will get through this.

Monday, March 4, 2013

Dos and Don’ts for nurses from “that parent.”

I wrote this one night I stayed at the hospital with Ryder and never posted it. It may give all my nursing friends and new graduates something to think about! :)

Dos and Don’ts for nurses from “that parent”


1.       Leave caps, alcohol pad wrappers etc. in the patients bed or on the floor

2.       Judge: while it is a nice concept that parents should keep a normal routine for their child in the hospital it isn’t that easy when aides are coming in every 4 hours for vital signs (day and night), nurses and doctors are coming in around the clock, volunteers and staff that get to know and love your child come in at 10:30 p.m. to visit and wind up your child and the many machines that beep for different reason’s around the clock as well. Really—how do you suggest I make a normal routine out of this?

3.       Make inappropriate comments, especially when parents/visitors can hear. I listened to an RN making fun of a parent who was bringing her child for a walk in a wagon early in the morning about how the parents hair was messy and out of place and how she would never be seen in public like that—hmmm try spending a month with your child in the hospital. Would you really care how you looked??? I also heard a few nurses complaining about a child that was noncompliant and didn’t want his TPN

4.       Turn off the call light without responding to it. Nothing ticks me off more than pressing the call light and having it be turned off 10 mins later w/o anyone checking what we need. I turn it right back on and it is turned off again after 5+ minutes. I don’t call for assistance often, and when I do- it’s not for my entertainment or to be waited on. If you are busy, kindly send in an aid, the huc, another nurse—anybody!! (or simply ask what is needed over the intercom).

5.       Please don’t assume you know my child or a loved one more than you do. He is probably feeling blah/blah/blah—Well, no, actually he is having nerve pain. How do I know this you ask? It comes from years of learning what every facial expression, movement and sound mean, not to mention the in depth research I have done to understand the disease process that my son is experiencing.

6.       DON’T give meds when you don’t know what they are or what they do!!!! And don’t respond to a parent,”I’m not sure actually” after a parent asks what the medicine was for that you just administered!

7.       Assume anything!!! EVER!! Not with doctors, patients, parents—ANYBODY!! Get clarification. Me: “Can you please empty my son’s G-tube content into his feed this afternoon (per doctor’s order) and I will do the one tonight? My Mom will be watching him for several hours so that I can have a break. Nurse: “sure.” Several hours later, I returned to find out the nurse in fact didn’t do it and reported to the next nurse that, “his mother didn’t want him to become upset when his grandma was watching him, so she wanted to wait until she got back.”

8.       Don’t expect your aide to always know what you expect. I have had to tell several aides at shift change to record my sons’ diaper output separately from the output from his continuous vent drainage from his G Tube (which also goes into a diaper , so it’s understandably overlooked, but could have big consequences)





1.       Answer call lights in a timely manner (not 15-20 minutes later) As a parent it isn’t fun holding your very sick child who has vomited all over their clothes and bedding while they cry and shiver when all you can do is cry with them and call over and over for help.

2.       Say hello & good bye at the beginning and end of shift (unless they are sleeping of course).

3.       Your job, don’t expect parents to do it. Yes, parents need to learn how to take care of their kids when they go home, but really, it isn’t necessary to wake a parent who hasn’t slept well for months to change a diaper or skip collecting stomach content to replace in a gJ feed because they don’t want the child to be upset when their Grandma is relieving Mama for a few hours for

a much needed nap (while forgetting to unclamp the tube that is supposed to be on continuous draining).

4.       Be truthful in a professional manner if you do not know the answer to something. Something like, that’s a good question, I don’t want to misinform you so let me go find out and I will get back to you as soon as I know!” (Make sure to keep your word and get back to the parent!)

5.       SMILE J

6.       Try to relate to parents and talk to us. We get stir crazy being in the hospital!

7.       Point out how cute and adorable our kid is—well, if you have to reach on some kiddos (not mine of course) make a comment on the child’s strength. It is always nice to hear a compliment and parents with medically fragile children often hear nothing but negative news.

8.       Set all the machines so they won’t beep at different times around the clock! Several nurses do this for us. It can be done!!! (Don’t ask me how though).

9.       Educate parents on all the possibilities to help their child. Learn as many little tricks as you can! We have struggled for almost a month in the hospital to brush our sons’ teeth every day. I have asked for any ideas many times. A few days ago, an awesome nurse gave the suggestion to use the oral care attachment for the suction machine!!  It’s working wonders!!