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...