We Sprung a Leak!

For the first time in our entire MIC-Key button using history, Elias' button sprung a leak today!! He went to bed last night with it looking fine and this morning when he walked into our room his button was sticking out way too far. I tugged on it a bit and there was almost no resistance from the balloon inside his stomach. Carson was carefully watching our whole interaction as he is known to do so intently. I asked him to run downstairs and grab a 10ml syringe and a bottle of sterile water and bring it back upstairs. He was happy to help and was back within a few minutes with the right stuff. I checked the water level in Eli's balloon which should have been 5mls and there was only 0.5mls left!! No wonder his button was loose and about to fall out. There was nothing holding it inside his stomach.

Elias helped me take it out and fill it with 5mls of sterile water to check for any leaks. The balloon looked intact and the three of us couldn't find any water leaking from anywhere. Since we only have one spare button and one spare g-tube available at all times, the old button was going back in. I put 5mls of sterile water back in the balloon, checked placement, and that was that. When we came home from our day trip Eli's button was loose again and when I checked the balloon there was only 1ml of water left. Al grabbed the new button kit and we replaced as Elias calls it, "his old stinky button" with a "new shiny, clean button". So, Eli is the proud owner of a new 14Fr 1.7cm MIC-Key g-button which has already been used to feed him 1.5 cans of Peptamen Jr. since his GERD is driving him nuts and he isn't eating much right now.

Elias with no MIC-Key button


Elias with a new MIC-key button

This week has been fun from strep throat with him in the very beginning of the week (third time since the end of May) to questions about mitochondrial disorder again because they never received the official results of his muscle biopsy to knocking his teeth loose on Monday to needing a new referral to Physical Adaptive Medicine to get braces for his hypotonic cerebral palsy and falling all the time. It has been a hard week. But this smile makes each day brighter and his laughter is infectious. He is certainly one tough cookie.