6 years, 3 months, 27 days

That's how long Milo had (yup, past tense) his g-tube. 

 

Day of Surgery 2/9/2007

He was just over 2 months old when I finally gave in and let them place a g-tube.  I resisted until it became clear he could not safely drink from a bottle.  He tried but the formula ended up in his lungs. The only way to get him home was to put in a g-tube.  At the same time the surgeon preformed a Nissen Fundoplication to prevent him from refluxing.   The type of g-tube that was placed is a button style so at least he didn't have a long tube to pull on when he wasn't eating.

Complications...

In those days, Milo never did anything the easy way.  There were complications from surgery.  Just 12 days later his small intestines pushed their way thorough the incision so back to surgery he went.  This time the surgeon placed retaining sutures (the red in the picture below) to keep him closed up and allow everything to heal.

Over the last 6 years I had a love/hate relationship with that g-tube.  He clearly needed it to survive but it also caused other issues that took some time to figure out.  Gagging and wretching were the worst to watch.  He was so miserable but finally I figured it out and we got the right medication to stop that.  Formula was another issue, he was allergic to nearly every kind.  Eventually I learned to blend up real food and put that through his tube.
 
Learning to eat...



 

 

 

Who knew learning to eat would be such a challenge.  Not only swallowing but chewing too.  Not only chewing food but learning to put toys in his mouth and chewing on them is an important developmental step.  Speech uses many muscles that are normally developed when eating.  Textures of food and toys was another hurdle he needed to overcome.  He still has some texture and flavor issues but has overcome most of them.  It took years but he finally learned to talk and then to drink and then to eat and then to drink with a straw.

Day of Removal 6/5/2013

Not very excited about having his picture taken

The removal process was pretty easy.  Feel free to skip this part but I thought some people might be interested.  First the doctor said that most stomas his size (18F) that have been there for so long don't close on their own but we could try.  The worst that could happen would be to put the button back in and schedule a surgical closure.  Since his tracheostomy stoma closed up so quickly I decided to give it a try.  The plan was that if everything he ate came back out the hole to just put the button back in and give them a call. If it only leaked some but was manageable to give it 4-6 weeks to close and if it was still leaking to call for surgical closure.  She just deflated the balloon and pulled the button out, applied some stoma adhesive then a mixture of desitin (to prevent burning his skin with leaking stomach acid) and stoma adhesive covered with a 4x4 folded in quarters and covered with tegaderm.  It looked like he had a golf ball stuck on his tummy.  He was afraid it would hurt so there was some crying and squirming involved.  The first dressing didn't last too terribly long, maybe 5 hours or so.  It came off so I was able to get a good look at the stoma. It was already closing quite a bit and was leaking just a little. Not that I even considered it, but a button would not have gone back in without great difficulty at this point.  I applied more desitin and gauze and taped it down with paper tape.  The desitin from the first time had squished out all over his belly so I had to use lots of tape to find clean skin for it to stick to.  I ran to Wal-greens and picked up some large tegaderm for the next day.  The next morning (approximately 19 hours after removal) I removed all that tape and gauze, it had only leaked a tiny bit.  I cleaned his skin, applied just a tad of desitin and a 2x2 then the large tegaderm.  This looked so much better and was much more comfortable for him too.  He hasn't complained a bit about his tummy hurting or it being uncomfortable, well except for removing tape!

48 hours later....

Not everyone has 2 belly buttons!

Here's what his stoma looks like just over 2 days after removal.  The 2x2 gauze was definitely wet and there was an air bubble under the tegaderm. It's a little white from the desitin.  This afternoon he leaned on the edge of the kitchen table and looked a little surprised then said "My tummy just farted".  I laughed, can't say I ever heard that before :0) 

Our compromise...

 

 

Milo has only ever known life with a g-tube, it was part of him.  He was very emotionally attached to it.  About a year ago I made the comment to him that if he kept eating well we could take his g-tube out, he quit eating all together.  It took me a few days to make the connection.  I backed off and let him regain the confidence to eat and told him that he could decide when to remove it.  His pediatrician said it was very common for kids to react this way.  This year I knew it was time so we started talking about taking his tube out.  Every time I started a conversation about removing his tube he would cry, finally he sobbed "but I will miss it".  I came up with an idea, a compromise of sorts.  I told him we would put it in a little box so can look at it and hold it anytime he felt sad because his button was gone.  He liked that idea and was ready to remove the tube right then and there but I made him wait for clearance from his pediatrician.  I found a small clear box normally used for displaying golf balls at  The Container Store.   It is just the right size for a button, and most importantly, hard to get open.  It is the perfect size to hold on to but his little hands can't open the box and loose the button.  As soon as the g-tube was removed and he was bandaged he wanted to put the tube in his box.  I did bring the box with us as well as a new button so we decided to put a nice new clean button in the box since the one that came out of him was pretty yucky.  He knows right where his box is too :0)