G-Tube....good or bad...regression or progression???

Recently on Facebook I have seen a lot of people asking about g-tubes...how did you decide, when did you know it was right, how old was your child, did they regress after surgery, do you wish you didn't do it, is it hard to care for, etc..... I have also received 3 private message regarding this same issue with these same questions, so I have decided to share our feelings about Emma's g-tube now that we are 4 months into have the tube, can I just tell you our feelings have changed since October.

Emma hooked up to her pump (the pad is to protect her skin
from too much moisture

In October 2016 we had to make a very hard decision on whether or not to give Emma a G-Tube. Our hearts were so torn on what to do because Emma LOVED to eat and she seemed to be gaining weight ok, it wasn't perfect but it wasn't worry some yet either. But after her swallow study we realized we didn't really have a choice on whether or not we want to do a tube because we soon found out that her life depended on it. Emma was silently aspirating her liquids with no visible signs, which means no coughing or gagging and a huge amount of liquid was going right into her lungs. I cried for days not wanting this to happen because in my mind this was Emma's regression point, this was going to be the start of us going downhill with her diagnosis, I felt as if it was giving up on her. Well I now know I couldn't have been more wrong.......

tube with protective pad
not hooked up to pump

Emma's surgery took place on October 18, 2016 and today is February 27, 2017 so for a little more than 4 months we have been giving Emma her liquids through her g-tube and can I tell you it has been the best thing for her. Before the tube Emma would constantly have a gargling breathing sound somewhat similar to what a newborn sounds like after they eat when food is still in their throat and they can't clear it. This was the same for Emma except that her noise was caused from her liquid sitting on her vocal cords and then going into her lungs. We hardly ever hear that sound anymore unless she is sick or her reflux starts to bother her.

We were very intimidated about how to use and care for the tube but soon after she was out of surgery the nurses gave us control and made us start caring for it. We administered her meds, flushed her tube, cleaned her stoma (the tube site) and then hooked her up to eat when it was time. We also got a 30 min crash course from the g-tube specialist at the hospital. It was all a little overwhelming and scary wondering if we really knew what we were doing but in less that 30 hours hours after surgery we were heading home. When we left the hospital Emma was getting 40ml/hour so she was hooked up to the pump (feeding machine) 24/7. We didn't really like her being hooked up during the night with all the cords if we didn't have to be. So we slowly started to increase her feeds, she currently gets 7 ounces (210ml) over the course of an hour and she gets this every 4 hours with no feeds at night. She also passed her pureed thickened solids so she gets solids throughout the day as well. Emma's starting weight before the tube was 18 pounds (less than 3%) and she is now 27 pounds (40th %). This weight has helped Emma grow and become stronger and have more energy during therapy.

still progressing in therapy

hard working cutie pie

Recently as most of you know Emma has been struggling with the return of her seizures after a year seizure free only on CBD oil. The return has really taken a toll on her body which makes her really sleepy, which in turn would make it really hard for her to eat cause she falls asleep. So she has had to take a slight break from her solids but thankfully we have the g-tube to keep her hydrated and keep her nutrition up. If she didn't have this tube I believe she would be in the hospital due to dehydration because there is no way I could get her to eat having 10-12 seizures a day (yesterday was 14!) She also had croup in December and it was so nice not to worry about keeping her hydrated and healthy.

If only we could have had this knowledge prior to Oct 18, 2016 maybe it could have saved us a million tears knowing this would save Emma in more ways than one. As far as regression...nope she still loves tummy time, and is progressing in therapy. I hope this can help even just one family to see that a g-tube is not giving up, it's giving her more.