4th Birthday Photo Session

4th Birthday Photo Session

Friday, March 25, 2011

The Dam Finger (Dam, not damn!)

The "finger in the dam" is currently holding. Lifting up the button is the only thing holding back the leak.  However, it's a thin line we have to walk if we go this route, because you pull it too tight and it can cause wounds on the inside of the stomach, the abdomen wall, suffocate the tissue, damage the innards... **sarcasm hat** 'oh you know, ...just a few risks!'  So far, it's working and there's a little bit of room left so it's not too tight.

They've determined that Andi was leaking 25-30% of her feeds.  Yep, 25-30%.  That is why she hasn't been gaining weight, as it was pouring out of her.  25-30% ... yeah, that's a lot!  The thing that is troubling us is that, we've been telling them about this leak for the past eight months.  Eight months it has been in, eight months it has leaked.  I've been to numerous appointments about the leak too... even seeing the actual surgeon in clinic twice.  Eight months.  25-30%...  I can't even imagine how much bigger and stronger, and possibly further along she'd be if we would've fixed this debacle eight months ago.  Maybe she'd be strong enough to sit up by now.  This hasn't just cost us a lot of money, appointments, time and ridiculous amounts of concoctions trying to protect the skin around the g-tube from breaking down... this might have robbed Andi of being more on par with where a nearly 10 month old Bean should be.  Frustrated isn't a strong enough word.

I counted the number of times we've changed the g-tube button in attempt to resolve the leak.  Nine times.  Nine times she's had her button removed and we've tried another one.  Nine.  When they did the surgery, she comes out of surgery with a certain type of doohickey.  I have no idea what it's called, but it's a heavy three prong tube that never came off.  They leave this 3-port doohickey on for at least 6 weeks while the area seals & heals.  After it's determined okay, they switch to the Mic-Key.  That's the button that has a cord that fits like a key, locks onto the button and enables to food to be fed directly into her stomach.  Our 3-port doohickey leaked.  Our first button leaked.  They changed that 12Fr, 1.0 cm button to a 14 Fr, 1.0 cm button.  That was in August of last year.  August.  It leaked then.  We went through a UTI, aspirated pneumonia, diuretic balancing, two consecutive months living here, and then the heart surgery... all while, the dang thing leaked.  We told them it leaked.  The nurses used a gazillion split 2x2's.  The thing leaked.  After the heart surgery... it leaked.  With the skin being wet all the time, the skin broke down around the g-tube, and in the course of trying to fix that and the leak... we changed buttons again.  Went to a 14 Fr., 1.2 cm, went back to a 12 Fr, 1.2 cm., now I think she has a 14 Fr, 1.2 cm in again... Nine times it's been changed. 
[I plan on emailing you Victoria, but haven't taken a moment just yet, but - they told me that a 16 FR would be way too big for her.  If this doesn't work, they want to do an NG or NJ, and we've said no...because she will pull it.  The NJ requires x-rays to confirm placement, so that's really not a viable option.  But ENT scoped her nose and reminded us of the more open side, in case they do have to do the NG.]

In any case, our game plan is currently feed her all her food with the dam plugged, that additional 25-30% volume should really start to pack the weight on.  In addition to that, we're working hard on oral feeds and I'm sending down the most caloric baby purees they make, or mixing in some rice cereal to the fruits.  Our plan is to do this and see how today goes.  So far, this seems to be working.  Andi is snoring now.  But we're keeping track of all the calories we give her...and we'll see if this dam is worth a damn.
Once her weight is up and on the right track, we will start g-tube weening and pushing the orals until we can retire the g-tube altogether. 


  1. Poor litlle bean! Arrggghhh how frustrating that they have let this go for so long. Here's hoping you get to retire that Gtube really soon.

  2. You never have to worry about getting back to me! I am just curious what the consequences would be if they tried a 16 Fr? Too big as in it will make her stoma bigger and harder to close? If it helps, it would be worth it, rather than having to deal with an NG. I know M has had her 16 Fr in for well over a year.
    But I second Mason's Mommy, that we are all hoping you get to retire the Gtube soon. Keep up the good work with the cheese puffs Beano =)