Showing Some Tubie Love

Not only is this week CHD Awareness Week, it is also Feeding Tube Awareness Week.  Due to Brinkley's CHD he also required a feeding tube.  It is not uncommon for children with CHD's to require feeding tubes due to the fact that they become breathless trying to coordinate the suck, swallow, breathe cycle that is required during feeding.  Generally these children will start with an NG tube or something similar.  This is a nasogastric tube and is inserted through the nose (hence naso) down into the stomach (gastric).  

The NG tube is often times temporary.  After some time, it was determined that Brinkley would benefit from a G-tube since it was becoming obvious that his feeding issues were not going to be resolved quickly.  I was devastated by the news that my 5 week old baby was going to undergo surgery for the tube to be placed.  I was scared to death and thought that it would be so difficult to care for and manage a tube.  Thankfully, nurse Kim who often took care of Brinkley on weekends was the pediatric surgeon's primary nurse during the week.  She was a wealth of knowledge about feeding tubes and walked me through the process and even brought in samples to show me what it would look like and how I would care for it at home.  This eased my mind a little and I realized that agreeing to the surgery may very well be the only way that Brinkley was going to be discharged from the NICU anytime soon.  On October 11, 2012 my tiny little guy underwent his first surgery to have his g-tube placed.  

Surgically placed tubes are usually either G-tubes or GJ-tubes.  A Gastrostromy tube (G-Tube) is placed in the lower left abdomen and goes directly into the stomach.  The Gastro-jujunum tube (GJ tube) is also placed in the lower left abdomen through the stomach but passes through the stomach and empties into the jujunum (small intestine) bypassing the stomach.  Brinkley's initial tube was long and was not removable from the skin.  









 You can't see it in these pictures, but the long tube had a port on the end that you would connect to the tube coming from the pump.  All meds and food/formula were put through the tube.  A few days before our NICU discharge a home health nurse came and trained us on using the type of pump that we would be taking home.  Not being good with math, I was a little intimidated by the "formulas" for figuring out the settings to program into the pump.  Fortunately, our NICU nurses gave me plenty of help.  I also learned really quickly that I could make the pump work a lot better for us by simply reading the instruction manual and learning about features that the home health nurse never told us about.  I also got quite good at figuring out how to "hide" the long part of the tube in his clothes.

I don't remember exactly how long it was, but after a few months (about 3 months) the long tube was removed and a button was put in its place.  The button is more flush to the skin and does not have the tube hanging from it.  It makes dressing much easier and it has to be more comfortable for the patient.    With the button, you put a connector into the button and then connect the pump to that, or push the meds through the connector.  

The button can be irritating to the skin, so many doctors recommend buffering it from the skin.  I have chosen to do this with tube pads.  There are several places that you can order them from and they can be plain or super cute.  Of course, I have opted for the super cute ones!  My thought is that if you need the tube, you might as well accessorize it.  (Especially since I don't have any girls to buy accessories for.)  

These are just a few of the button covers that we have for Brinkley.

When Brinkley's tube was placed I really wished that I had a visual to get a better idea of what to expect.  With this in mind Bryan and I have taken a few photos and made a short (very basic, nothing fancy) video about using the tube.  Before following the steps on the video, you will need to collect your needed items (connector, meds, syringes, feedingbag, etc.)

 
These are the items that we need on a nightly basis for Brinkley.  You'll see his meds and their respective syringes, a connector, sterile water, and a syringe for the sterile water. I've included a close up of the connector.  I would recommend that you ask for connectors that have med ports.  This means that there is a large opening and a small opening on the end of the connector.

Here is our attempt to walk you through the steps of using the tube.  The best part is the super cute model that we used!

I truly hope that this is helpful for someone and that it helps to ease your nerves about having to use a tube.  It is not at all like I had thought and honestly isn't that big of a deal.  The worst part was figuring out how to hide the long tube in his clothes and being careful not to catch it on anything.  Buttons do have to be changed out periodically.  Brinkley is on a 3 month schedule and they occasionally do malfunction or pull out.  I have had to learn to replace it on my own.  This was a TERRIFYING thought to me, but Nurse Kim made sure that I was more than prepared and now I do it like a champ in less than 2 or 3 minutes.  

I hope that you don't ever need to know how to do this, but if you do or if someone you know does, please pass this on.  Feel free to contact me if I can help with more info or more photos.  My experience isn't worth much if I don't share it to help someone else!