Replacing Mic-Key

It's no big thing (well not now anyways), but today was the day to change Jocelyn's Mic-Key Button. We typically change her button around every 3-4 months. The professionals say the buttons can last up to 6+ months, but we've notice after about 3 months or so, the button is hard to close, or the flap begins to tear, etc.

Even with being a nurse, changing this button can be intimidating, but I think that has more to do with actually doing this to my daughter more so than the actual task.

Before we begin, of course we wash our hands! You have no idea how many times people forget to wash their hands before they want to do something with Jocelyn. Its so simple and can prevent so many other problems. Ok, I won't get on that soapbox.

After washing our hands, I open her g-tube supplies and start to get everything ready. Here is a picture of Jocelyn's tube feeding kit.

{Included are 2 different feeding extension sets, the

Mic-Key Button and both a 20mL & 5mL syringe)

Once I know all the parts are in there (sometimes your missing some pieces which is always a fun time), I fill the 5mL syringe with 4mL of regular tap water (no more than 4mL because it could cause the balloon to rupture). Next, you attach the syringe to the Mic-Key Button and inflate the balloon with the full 4mL of water to ensure the integrity of the balloon like you see below.

There is only one way to attach the syringe so you can't mess it up! :) The port that you attach it to also has the letters 'BAL' to stand for 'balloon' to help you remember. Once you know the balloon is good, you draw the 4mL of water back out of the balloon to deflate it so it can be inserted. I leave the syringe, with the 4mL of water inside, attached to the button so once I have it in the abdomen, I can push the plunger without fumbling through it. Also, to make the balloon glide into the abdomen with greater ease, I roll the deflated balloon through some kind of lubricant like Astroglide or KY Jelly which only make things more comfortable for Jocelyn without causing any damage to the balloon.

Once I've got everything tested and ready to go, its simply time to switch this sucker out! I always make sure the skin around the old Mic-Key button is clean before starting, and I have Jocie lying on her back with the supplies next to me.

{Her sweet, kissable little belly}

All that's next is to attach a different 5mL syringe to the 'BAL' port on the old Mic-Key button, and remove the water that is inside the balloon. Once all the water is out of the old balloon, lift up on the Mic-Key button and out it comes. What is left is a little hole like you see below. Don't let this little hole fool you though. It is really important to note that you should change a g-tube button on an empty stomach because this thing can spew like crazy if the tummy is full.

{This looks so weird to me now that I am use to her having a button}

Without too much wait time, I slip the new Mic-Key button right in and inflate the balloon with the 4mL of water. Wallah! All finished and truly this only takes minutes from start to finish. No tears, no whining and we have a fresh, new Mic-Key button.

{When they are new, the buttons are so fresh and white!

The gastric juices change the color overtime}

I still clearly remember when I had to change Jocelyn's Mic-Key button for the first time and thought I was literally going to die from a panic attack. I kept thinking, "I can not do this...I didn't even want this stupid thing in the first place...this is not fair to ask me to do this to my daughter..." I know I am a nurse, I know this, but that doesn't mean a thing when it comes to your baby. And let me tell you, changing a g-tube is NOTHING compared to having to repeatedly insert a NG-tube down your babygirl!!!

THAT WILL BREAK YOUR HEART!

Before Jocelyn ever got out of the NICU/Special Care Unit, all the physicians were saying "She's going to need a g-tube...we need to put one in." I'm sure they felt they knew what was best, but they also didn't know us and that we would try everything in our power to be successful because that's who we are. We fought them, and won, because I felt like she and we, deserved the chance to try and be successful with eating and drinking independently.

We were successful for a long while until her body's demand for fluids could not be met despite all our efforts. When push came to shove, I had to realize that we were spending the bulk of our day simply trying to drink enough to have at least 3 wet diapers/day, and I was dang near force feeding her. It's devastating when you feel like you can't provide the most basic needs for your child, and you feel defeated because no matter how hard we tried, it wasn't enough. The point I had to realize was that we did try...we tried! And just because we have a g-tube now, doesn't mean we don't keep trying. Only now, we are able to do so much more during our day and it doesn't solely revolve around eating and drinking. Since getting the g-tube we are able go and do things together and with others, actually do therapies and learn, we enjoy our day, have fun...we actually LIVE now!

There were a million reasons for why we did not want a g-tube for Jocelyn, but the top 3 reasons were probably the following:

1. It was another invasive procedure to add to her already super long repertoire of surgeries. The thought of her having to endure the pain and recovery of a another surgery was horrible, and not to mention how it can cause set backs in achieving our goals.
2. An increase risk of infection because of having a surgery, and also in regards to her previously placed shunt. Her shunt tubing goes from her brain down to her abdomen. Since this is an abdominal surgery, we didn't want to risk getting her shunt infected which in turn would infect her brain.
3. And maybe one of the biggest reasons was in regards to the stigma that is associated with a g-tube. Once a child has a g-tube placed, especially one with the diagnoses like Jocelyn has, its like people automatically view and treat that child differently. Meaning, all kinds of assumptions are made in regards to what will and won't be achieved physically & cognitively, and its easy to write a child off with the thought "well, this is just never going to happen" in regards to nearly all facets of life. I will NEVER accept that type of approach for our daughter...EVER!

I know I've digressed a bit, but hopefully none of you will look at a child, see that they have a g-tube, and think of what they will not achieve. Instead, I pray that we look at one another and see all the unlocked potential that is within!