While this sounds very gross, it is not entirely abnormal as long as there cannot be a “loss” counted.
Lately, his stoma has been looking a little more irritated. However, he doesn’t squirm when we clean it a few times a day. He always has some redness around the stoma because his skin is super fair and very sensitive. The small red halo is as good as it is going to get. The red halo has been widening recently. We have also noticed that the button seems to be being “pulled down.” This sounds strange, but it is almost as if it flops out and hangs a bit when he stands up. We have been thinking that the balloon is not holding water the way it should be. After checking it a few times with perfect results, we decided to place a new button. That was three weeks ago. The same issues continued as irregularly as before.
Tuesday, I noticed some wet spots on the kitchen floor. I found this odd and a little nerve racking. I walked to check his book bag and noticed that nothing was out of the ordinary. Sometimes, Ian’s bag will leak or something will disconnect inside and the formula pools inside the book bag..... leaking..... and causing a disaster. Reassured by the dryness, I resumed activities.
About five minutes later, Ian came over to me in the kitchen again. When his belly feels very full, sore, or bloated, he will lift his shirt and push it out for kisses. Since he came over and lifted his shirt, I bent down for kisses. I immediately felt the wetness and smelled the formula.... and I say "formula" loosely. Tubie mommas know that when formula leaks from the stoma, it never smells like formula. We say formula is leaking, but it’s really vomit. I know this sounds terrible, but formula that leaks from the belly with bile and stomach juices, is essentially vomit. It is just expelling from a different location. I know, gross huh?
I knew immediately what the floor spots were........ formula/vomit that was leaking from his button. Once I stopped the pump and detached the feeding extension, I saw the dripping wet button cover. I slowly peeled it away and cleaned the button and stoma. I was able to successfully keep it from running out around the stoma. Ian continued his meal and I made a phone call to The Children’s Hospital of Philadelphia.
|An example of a dry button cover around and supporting Ian's G tube button.... they partially serve to absorb any leakage the tube may produce or allow|
I got a phone call very early the following morning. The nurse practitioner asked some questions and asked for some photographs. They said one of two things was most likely happening. The button was either too big or too small. There are two parts to a G tube button: the stem and the button itself. The stem is measured in two ways: circumference and length. The circumference is called the “french” and the length is measured in “centimeters.” The length of Ian’s button was most likely the culprit.
|G tube Button measurements|
She mentioned that if it is too long, the end of the stem would back up against the back of his tummy. This makes the front part of the stem push outward from his belly. The loose gap from pushing outward causes leakage. If the button stem is too short, the balloon inflating the button to hold it in place is inside the tract.
When the button balloon inflates on the inside of the belly, retention holds the button in place. There is a tract, or path, that runs from the outside of the body, through to the inside of the stomach. The stem runs through this tract. The best correlation I can create is an ear piercing. When there is no earring in, you can feel the tract if you squeeze the earlobe together. This is a good example of a tract. Ian’s belly tract, while unable to feel, is very much the same. When the button stem is too short, the balloon (end of the stem) cannot make it all the way inside the stomach. As a result, the balloon inflates inside the tract, instead of inside the belly. This doesn’t create a tight seal and food can leak from around the balloon.
|An example of two G tube buttons, showing inflation of the balloon inside the stomach, with the stem running through the tract......... correct positioning|
|An example of what the balloon should look like inflated inside the stomach, with the stem passing through the tract|
So as you can see, neither of these scenarios is favorable. The last possibility is that the french is too small. This would mean that the circumference of the stem is not big enough to fill the size of the stoma..... causing leakage. This is typically not a problem unless there has been stretching or trauma to the stoma. While Ian’s appears as though it has been irritated, no significant trauma has taken place.
As I expected, the photos I emailed were not helpful. Ian’s stoma needed measuring to find what size was needed. Only trouble is, we live three hours away. And of course, it was Friday morning. We had a few choices.
1) Visit Ian’s general surgeon in Virginia who initially placed the button tube, have them measure the stoma, and give us a new button. I knew they would not have buttons in stock...... even though they should. I also knew they would not have a measuring device because...... well let’s just face it, they never have what Ian needs.
|G tube stoma measuring device|
2) Visit the local children’s hospital ER and have the stoma measured, or have a radiography study done with barium to see the size of the stoma, and have them give Ian a new button. Once again, this is the same hospital-doctor affiliation. I knew they would neither have a measuring device nor know what test I was referring to. The reasons we go to CHOP mostly have to do with the idea that Ian does not get what he needs here in Virginia. I knew there would be a temporary fix with a surgeon office visit referral.
NO DICE!!! We were headed for options at CHOP......
3) Visit CHOP next week when we were free and have them measure and give a new button..... only trouble is, we need a temporary fix until then...... and we have already established that we do not trust the department here.
4) Visit CHOP today and have them measure and give a new button. The trouble here is we live three hours away, it’s Friday, in the middle of a work day, and we need to be there in the next 6 hours. YIKES!
We chose option 4. I quickly made some phone calls and got everything in order. I picked Ian up a little early from school and off we went. There is something about these urgent CHOP trips that is always surprising......... you would think by now I wouldn’t be surprised anymore. Thankfully, Ian had a good ride up and took a nice nap. We needed to arrive by 3:00, 3:30-ish. We arrived at the check in desk at 3:20....... YEA!!!!! They were able to take us back right away.
When she removed the existing button, Ian’s belly was very red and sore. The leakage and irritation had gotten out of control. Thankfully, it was not infected and there was no cellulitis. She measured the stoma length and Ian was clearly in too long of a button stem. Sometimes, as kids grow, they do need smaller buttons. As the kids, or adults, lose belly fat, the tract becomes shorter. The stem no longer has a place to go, and needs to be shortened. Ian embodied this perfectly.
Ian was actually wearing a button two size too long. His current button stem was 1.5 centimeters long. Ian was now measuring between a 1.0 and a 1.2 size. There was some swelling from the irritation and inflammation. When that diminishes, it will be at the 1.0 level. She was able to give Ian a 1.0 size button. The french size (circumference) was fine just the way it was. The slight stretching was from irritation only.
We were sent home with a 1.2 back up button, just in case. (She had originally opened the 1.2 size first, so we took that one home.) You always need to have a back up button in case there is an emergency. The new prescription will be for the 1.0 size and our home care company should be able to get us a back up next week. We always hang on to the larger size, sterile, unused buttons we have because you never know when you will need a larger or smaller size. The whole appointment took 45 minutes. Three hours of driving up and three hours of driving back for 45 minutes. But the reassurance we received from the appointment being at CHOP was well worth it!
We spent some times with friends while we were in Philly and had dinner. On the way home, we stopped and let Ian run around at Target. He had lots of fun. Target has the best family restrooms!!! Whenever we need to try and do a bedtime routine with Ian: cleaning button, meds, pjs, feeding pump...... we always chose Target! After getting him all settled, we finished the ride home. It was a late night, but a productive and well thought out visit.
As a side note, it is also worth mentioning that as we prepared for the trip to Philly, I contacted the surgeons here in Virginia. They did have a measuring device at the office, but it was not sterile and could not be used. I asked, what’s the point of having it if it cannot be used? They said they would need to order one for him and look at it next week........ no thanks!! When I asked if the ER would have the equipment needed to help us, they mentioned that they would probably do a short term fix and then refer back to them........ But then again, Tom and I already knew that! The practitioners at CHOP were horrified to hear that the surgeons and hospitals in a major children’s medical treatment center would not be prepared. Tom and I reassured them that this was no surprise to us, and that is why we drive six hours for a 45 minute appointment.
Thank you to CHOP’s general surgery/ GERD clinic department. You never let us down and continue to surpass all the competition! In the end, Ian has a better fitting button, a healthier stoma, and a happier feeding experience..... Amen!