Things I've learned while raising a kid with Biliary Atresia

Transplant is about a week away and I find myself reflecting on the last couple of years and what we've been through. I've been very emotional and anxious just waiting for the day to arrive. The blog has been a place I can come and let out my feelings and hopefully share my experience with others who may be in the same situation, but I can't really find the words to share with you how I'm feeling right now and I'm not sure there are any that are appropriate. Instead I am going to write a little about what I've learned over the last couple of years living with a kid with Biliary Atresia.

Not in any particular order.

1. Biliary Atresia Sucks!

         Not much more to add to that.

2. Google is your worst enemy!

         From the minute you hear those words Biliary Atresia, you will google the shit out of it.

And with all the medical pages you will happen to find every worst case scenario story with it. Websites, blogs, Facebook pages and groups, and the more you read the more you will drive yourself crazy. I took advice from our GI when she heard I was googling and joining groups on line. She said please stop! You will mostly find stories of the sickest of the sick and worst case scenarios so please try to limit yourself. Don't get me wrong, these pages are full of the most amazing kids and parents fighting to have a normal life but I found myself obsessing over them thinking all of these things will happen to Philip and becoming depressed. So, I limited myself and I joined only one group on Facebook and it is a great place to ask questions and get support from people in similar situations. But I don't dig anymore than that. I know my limits and I just mentally can't handle it. 

3. There really is no rhyme or reason to the   disease. Every kid is different.

         There really isn't. One kid may have the Kasai and never have a problem till they are 18 years old. Another might have the Kasai and it will fail immediately, making the child need a liver transplant quickly. Some kids like Philip's Kasai works ok but their liver sustains damage over time causing other issues like portal hypertension and GI bleeds. Some kids just itch. Some need feeding tubes, some don't. Some have major vitamin deficiencies, some don't. And just because it happens to one kid, it doesn't mean it will happen to yours. Who knows why it manifests in such different ways. Just focus on what might or might not happen to your kid, just take it day by day and deal with the next issue as it comes. 

4. While your world feels like it is crumbling, life goes on for everyone else.

        From the minute Philip was diagnosed, I felt like the world was crumbling around me. All my hopes and dreams for our little family of four were forever changed. Yet everyone around me was still living their lives like normal. Going to work, going on vacation, doing things that I had to put on hold for a little bit. I wanted to yell at everyone and make them feel the pain I was feeling. Don't you know what my newborn son is going through and you are just standing there like everything is fine!!

Looking back, I'm not sure what else I expected. Life does go on and it eventually did for us as well. Back to work, activities, and even a little weekend vacation thrown in. You'll find that some people might avoid you or not know why to say, friends you thought would come visit the hospital might not. Don't take it personal. They're probably uncomfortable and don't know how to deal with it, and that's ok.  I don't hold it against them. Heck, I don't know what to say sometimes when someone is going through something difficult. 

5. Trust your gut!

         If you feel something isn't right with your kid, trust your gut and bring it up to the doctor. Most of the time you will probably be right.

6. Speak up!

         This was a hard one for me. I am typically a shy person when it comes to asking questions or confronting someone. If you're not sure of something or something doesn't seem right, whether it be medications, hospital stays, anything, please speak up!! If you're not comfortable with your childs care, speak up! In hospitals there are nurse managers, patient advocates, a lot of resources to use if you're not comfortable with a situation. Ex. We always have a bad experience when residents try to take blood from Philip, so now I speak up and request transport or phlebotomy to do it. They may think Im being pain, but I am saving my son from undue pain.

7. Be Nice 

        I know this sounds obvious, but when you are in the moment and frustrated because your child has been crying for 2 hours and they can't eat, or when I get another hospital bill for $4,536 when the same procedure was covered last time in full, it is easy to snap at the person you are speaking with. But I have found when I am super nice on the phone with billing issues they are nicer in return and willing to help a lot more.  I'm guilty of it but have learned to just smile through it all. Even a simple chat with housekeeping can make your day brighter.  

8. The nurses are your lifeline

You will most likely see your nurse more than anyone in the hospital. They bring the food, the medicine and basically everything you need. Appreciate them and cut them a little slack if they take a little longer bringing you something you requested, they are often over worked and under appreciated. 

9. Make time for yourself (and significant other) I know we feel like we need to be there 24/7 for our little BA fighters, but we need time too. Don't forget to take care of yourself. Go get a pedicure, go to a movie, get lunch with a friend. Get out and take a break. It's OK. And don't forget about you're significant other too. Go on a date night and talk. Don't stop communicating with each other!!

10. It's OK to laugh

This is the most important to me. Yes things might suck and you feel like you want to throat punch someone but its ok to smile and laugh even though your child is sick. I completely feel that they feed off of our energy and if they see us laughing and smiling, then they will know everything will be ok. 

Dan and I try to find the humor in most of our situations. They might be politically incorrect and just wrong on so many levels but if something makes us laugh and gets us through a rough time and lets us forget about all the crap going on, then I'll laugh at it.