New Type of G-tube

Yesterday, in very surprising fashion, the surgery team came in to replace Elias G-tube with a different type called the malecot G-tube. This is a little used type of G-tube because this type has a higher instance of falling out. It is not as stable, and slightly more cumbersome. The mic-key style G-tube that Elias had is much more accommodating for mobility. Our thoughts on this were, considering he will more than likely be sent home on continuous feeds, mobility is not an issue. Should we progress to bolus over time, we may then be able to switch back to the mic-key. As for increased risk of falling out, well, it sure beats a constantly leaky G-tube. The other positive was they were able to use the same stoma for the new tube, so no surgery was required. We will try and get a picture of the new G-tube today. We were unable to yesterday because nothing can be as simple as just putting in something new. Would you believe that about 7 hours after they placed it there was leakage...but not from the site this...from a tiny pin size hole in the tubing. All we could do is laugh about it thinking, Elias buddy you can not catch a break with these things. For a temporary fix for the rest of the night they put liquid suture around the broken down area. Hoping this would hold it until this morning when the attendings would more than likely replace it again. We are still awaiting word on if/when that will happen.

We found it funny that the change was made yesterday, because on Friday our conversation with the surgeon and the NICU attending went a little different than anyone expected. When we explained what was discussed last weekend with the surgery chief, our surgeon seemed taken back, as if it was the first he had heard of it. Regardless, we talked about the variations in tubes and he wanted to see how the existing one did over the weekend. Without demanding the change be done, we did take the opportunity to discuss some details about the numbers we had observed. We sat down Friday morning with all of Elias flow sheets starting with September 1st through the 18th, recording his daily leakage output. Over that 18 day period Elias lost 441 ml of fluid from the measurable leakage, keep in mind there is always immeasurable amounts on clothes, bed, and in between dressing the site. Even so, just taking the measurable numbers produced astonishing results, in our humble, non-medical opinion. 441 ml averages (there were a few days it was 50 + ml) to 24.5 ml per day of leakage. That is over one hour's worth of feeds. Hypothetically, we added in an additional 2 ml per day to quantify the immeasurable leakage (Wow I sounded like a mathematician). This increased the average to 26 ml lost per day. We told them how we felt the reason Elias was still gaining weight was we were compensating 2 hours (48 ml) per day for the leakage and increased his calories. Without those measures Elias would still have his nutritional issues and most likely other issues like dehydration. I guess this made an impression that we were looking at this logically and not emotionally, reality vs complaining. We were arguing hard numbers and facts, nothing else. So here is to hoping that the new G-tube is less problematic.

As for Elias' weight, he is about 7 lbs 10 oz. He is starting to "chub out" a little. You can see the chubby cheeks and feel the baby fat developing on his arms and legs. Since we began compensating for the leakage 2 weeks ago Elias has been steady gaining close to 1 oz per day. We actually have another family meeting on Tuesday morning. This was at the request of the NICU doctors to reevaluate the plan since we have progressed toward meeting the goals since the last one 3 weeks ago. Also, to discuss what else needs to be done to get Elias home. We still feel like we are several weeks out for this, but it is getting exciting. We are trying not to get too excited yet, because there is still an awful lot left to be accomplished. We are still awaiting approval of the medical assistance, only then can we proceed forward with the home nursing care. We also have to do a 24 hour session at the NICU where we do everything to care for him, to demonstrate competency, I suppose. We are certain there will be some other things added to our growing list of things that need to be accomplished prior to him coming home. Realistically, we are mentally prepared to get into mid-October before he comes home.