Our Decision to get a G-Tube

When you start talking about feeding tubes people get FREAKED out. Family and friends that watched our daughter (without a second thought) were now afraid to touch her and hold her. They are still scared to watch her for any length of time.

After our first 24 hour hospital stay and initial diagnosis,and after they explained in detail how dangerous her situation was, the doctor gently suggested that we discuss an option to learn more about a "g-tube".

Jasmine and her G-Tube

The G-Tube is a direct port from the outside to the inside to her stomach. We hook up a tube extension and push in what we need to. In the picture above I am giving her juice for calories and then flushing with water. It is important to keep the tube clean inside and out. 

It is important when kids like jasmine refuse to eat that they receive what they need or their body begins to break down their own protein. In her case when her body's protein floods her system her ammonia spikes. He told us that in extreme situations the tube could save her life.

We were sent home with two medications and special formula that she had to take or she would be in danger.

We tried everything, lots of mixing things with apple sauce, we tried to flavor things but she refused everything. 

My husband tried to reason with me "she's been refusing to eat for months" "this isn't going to happen over night". The first hospital we were admitted to kept using the term "malnourished" like I wasn't feeding my child. The truth is I fought (and still do) every single day to get my child to eat.

I felt so defeated. I felt like I had failed. I had failed her.

We returned the next morning to Childrens National Medical Center with our bags packed. We were ready to stay. My husband told me he wasn't letting her leave that hospital without a G-tube.  I couldn't imagine living with this stress of not being able to give her the medications she desperately needed. I agreed. It was the right thing for us to do.

Jasmine had to get a feeding tube through her nose and down into her stomach to get her new formula into her body because there was absolutely no way we could get her to drink it.(It tastes like flour water it's really gross by itself.) We tried every form of mixing it and adding flavor but she wasn't having it. We had tried to shove so many things down her throat that she had completely shut down. She pulled out her feeding tube five times the first day. We had to stand by and watch as the nurses hold her down and shove it back in each time. She screamed and I wanted to scream.

We had to wait for days to get the approval all the while we were holding our daughter down and forcing medications down her throat while she screamed bloody murder. We had to do this three times a day.

The morning of her surgery I drove as fast as I could to get to the hospital sick to my stomach that I would miss seeing my little girl before surgery. I left at 6 am but they came to get her early. I had to beg the ladies to let me back to see her before they took her.

I started to doubt my choice I started to worry about everything. She came out of her surgery and when she woke up she wanted me to hold her. My baby.

After all of the pain and getting her through the first weeks after her surgery, it's the best decision we have ever made. The "tube" as we call it comes with its own set of problems. It's a long and difficult learning curve and it's scary as hell, but at the end of the day we know that we can get her the medicines and formula that she needs to survive right now. She may have her tube for a few years or she might choose to keep it for life. All I know is until she learns how important it is for her to take her meds and formula, I know that I have one less thing to worry about.