Monday, March 24, 2014

Unexpected Happenings...One Year Later!

Spring Break is here once again.  This year on the Monday of the break, we were at home.  No scheduled appointments to Children's Hospital to see a neurologist, or to have a swallow study done.  That's exactly what we were doing this day last year.  

March 25, 2013 a day/date I will not forget for a long time.  
That is the day I was told that it was no longer safe to feed my child the only way we had used for 11 years.  We could not leave the hospital.  I still cannot describe the shock, the hurt and the fear I felt that day.  That week she spent in Children's is chronicled here.  
Kerstin at Children's Hospital-Neurology--March 25, 2013

A year later, Kerstin's weight has doubled.  She has outgrown pretty much all of her clothes.  We are in a slow process of building a new wardrobe for her.

Kerstin-both taken March 28, 2013 

I will say this about our feeding tube journey;  I never thought that I would have to learn to feed my daughter via a g-tube.  I was always scared of them.  The unknown, the horror stories I had heard just had me completely afraid and unwilling to consider it until I had NO choice at all.  Now, my daughter is thriving!  As previously stated, her weight has doubled.  She is still easy to get sick with viruses and things from "germy" school, but not as often.  

Kerstin--taken March 11, 2014

I'm learning about the g-tube everyday, a year later.  I have become more comfortable with using it, just not changing it, I'll leave that to my sister for now.  As with everything, it is a learning process.  We are always growing and learning!!

More to come...

Tuesday, March 18, 2014

A Little Determination...

These pictures are the proof that a little advocacy and determination goes a really long way!!!

It is also a reminder to MYSELF to never give up, stay visible, vocal and focused!  I am an advocate for my child and others living with disabilities!

April 27, 2013
March 18, 2014
Comparative photo

More to come...

Monday, March 17, 2014

Vote for Kerstin Sanders - Hayneville, AL in the 2014 National Mobility Awareness Month Local Hero contest!

HEY GUYS...if you in the orange box before you submit your vote, please click on the "Get an extra vote" button, answer a simple question, usually caregiver/accessibility related...your vote will count as TWO....THANK YOU!!! Vote daily and share often!!!!


Vote for Kerstin Sanders - Hayneville, AL in the 2014 National Mobility Awareness Month Local Hero contest!


Thursday, March 6, 2014

G-tube journey

March 28 will be one year since my little one has had her gastrostomy tube or G-tube placed.  Since that time, Kerstin has double her weight (pics will come in an anniversary post)!!

When I say that it has been a journey, that is an understatement.  I must say that I have yet to change her port/g-tube.  I am too queasy!  I always get my sister (who is a nurse, thankful mom here).  I don't know if I'll ever have the nerve to ever change it.  Seeing that little "unnatural hole" on her belly.  I know it's there for health reasons but, I don't know...

Since we've become g-tube aware...I think just about everything imaginable has happened when it has come to g-tube boluses and the continuous feedings overnight.

Here we go:

I'm doing a bolus, Kerstin starts to laugh at something on TV...Pediasure is everywhere!  That happens with sneezing, coughing even gas, contents come back like an erupting volcano!!

I start a bolus, the extension line is open and nothing is moving!  WHY?!?  The cap is on the tip of the syringe!!!

How about a newly changed port yet, the bolus is moving really slow, what is wrong?  I panic and call the doctor!  The nurse calmly tells me to give her a little room temperature Coke and let it stay in the line for about 30 minutes then flush.  That simple?  Yes, the boluses moved much better.

Getting all set for continuous feeds, meds are given the pump is started...ten minutes later it's beeping!!  The line is NOT opened!!!

Or, the next morning after the continuous has ended, she's given her morning meds...I can not for the life of me get her extension to disconnect from the feeding bag!!  I had the strength of Wonder Woman and twisted it on really tight.  Come morning, it wouldn't budge.  I had to throw it away.  Thanks to the collection of medical supplies we have on hand, she has a stash of them.

I've left home before and left her water bottle...quick stop at the nearest store to buy her a non-refrigerated bottle!

I can not forget in the beginning, we are not home, once at school and once on a day we were just out and about, no extension set to feed her!!! Thankfully we weren't far from home.

I know I'm forgetting something.  All that to say, I was originally afraid and completely devastated that MY daughter may need a feeding tube, then getting to the point of not a maybe but, she has to have it!  I am thankful for the journey, she has gained weight, and she hasn't been as sick as often as she used to be.

The tube/ port and the extensions HAVE to be kept cleaned.  There's no getting around that!


More to come...