Information Overload!!!

 


 Newsflash, it's 2015! Like most parents, as soon as "hirschprung" was said, Alyssa and Jake typed it into google and clicked and read everything they could find.  







Some of it was inspiring.  Some of it was confusing.  A lot of it was scary.  

Children had died.  Children had ostomies for life. There was SO. MUCH. POOP.

But what resources are easy to understand? And which can be trusted?

Alyssa and Jake found the Mayo Clinic's website to be very helpful.  It was a name they knew and trusted.  The information was easy to understand and the graphics were helpful without being too... graphic.   


They also found many, many, many blogs detailing people's personal experiences or their experience as parents. But many of them were outdated or anecdotal.  However, they found one blog following a child from diagnosis through early childhood (and ongoing...) called Roo's Journey that they thought was really well done. 



Alyssa & Jake found a lot of information-- good, bad & in between. But most importantly, they found hope.







Mayo clinic HD page: http://www.mayoclinic.org/diseases-conditions/hirschsprungs-disease/basics/definition/con-20027602  

Roo's Journey: https://roosjourney.wordpress.com/ 

info overload image: http://www.danadorsi.com/wp-content/uploads/2015/01/information-overload.jpeg 

mayo clinic image: https://pbs.twimg.com/profile_images/489129767891783680/QKA-tOnf.jpeg

Caleb Loves His Nurses!

As first time parents, Alyssa & Jake felt quite overwhelmed with everything that had happened in Caleb's short life.  They were so grateful for all the medical staff that had been there not only for Caleb, but for them as well. They had spent so much time in the hospital that it began to feel like home.

They were happy with the doctors of course, but they really appreciated all the time that the nurses spent with Caleb that allowed them to take a shower, run

to Starbucks for coffee, or even take a nap from time to time. They knew that in addition to loving on Caleb, they were constantly assessing him.  Some of the things they were concerned about are listed below:


Nursing Diagnoses

• Pain r/t constipation and/or surgery
• Imbalanced nutrition: less than caloric demands
• Knowledge deficit related to colostomy procedure & disease process
• Risk for infection following surgery

Nursing Interventions

• Anticipate and treat pain as ordered with medication and non-pharmacologic methods
• Implement the dietary regimen to provide for the child’s nutritional needs
• Educate the parent or caregiver how to provide care for the child before and after the colostomy
• Monitor the stoma or wound site for signs of infection as well as monitoring the child for s/s of infection

Nursing info from: http://www.istudentnurse.com/peds/hirschsprungs/ 
Image from: https://cameronmoms.files.wordpress.com/2011/10/nurse-with-baby.jpg

He needs an osto... what???

After confirming Caleb's diagnosis of Hirschsprung Disease, the doctor explained the treatment to his parents. As they had learned, part of Caleb's colon had no nerve cells.  This part of the colon would need to be removed. 

Caleb would have surgery to remove the part of his colon that wasn't working an the doctor would create an ostomy. In this procedure, the upper part of the colon is attached to the abdominal wall.  This type of ostomy is called a colostomy.  In a colostomy, the stool leaves the colon through the abdominal wall and drains into an ostomy bag. 

This is what an ostomy looks like from the outside, and what's going on inside:

Many patients and families are initially nervous about this, but learned that caring for an ostomy isn't that difficult! 

Most children have the ostomy for several months or up to a year, and then they are able to have the upper end of their colon reconnected to the lower end. This is called a pull through procedure and it is very successful for many children! Caleb's doctor was confident that Caleb would be a good candidate for a pull through procedure once he was older.  However, in some children an ostomy is a permanent part of their life.  










http://nursingcrib.com/wp-content/uploads/colostomy.gif

What Does Hirschsprung Disease Look Like for Others?

Caleb's parents knew what symptoms he had, but they wondered about others with Hirschsprung Disease.  Does everyone develop symptoms in infancy? Can it affect older people?


They found out that all people are affected from birth and most people experience symptoms right away, but this is not always the case.  Symptoms depend on the age of the child and can include:

• A swollen belly.

• Problems passing stool. Newborns with the disease may not pass their first stool until at least 48 hours after birth.

• Vomiting.

• Not wanting to eat.

• Constipation.

• Not gaining weight or growing

This short video gives another description of Hirschsprung Disease and some common symptoms

 

Info from: http://www.webmd.com/children/tc/hirschsprungs-disease-topic-overview