Here is our G tube recovery update!
The boys have Gastrostomy Button (MIC-Key) in size 14 french. They also got a Nissen Fundoplication.
We we feel the G button will be beneficial for a number of reasons. Even when the boys were successfully eating everything by mouth it was not without struggle. They would sometimes take an hour per bottle, using far too much of their energy that could be used on other more productive things. On good days it was fine. On bad days it was dangerous. There were days where it felt like every second of their alert time was spent feeding as opposed to strengthening and stretching or other important therapies. And after all of that they were both prone to vomiting up large portions of their feeds as well. The G-tube does not prevent us from feeding orally but rather gives us a steady safe and reliable method to use for the majority of their feeds. We can and have every intention to work on their oral skills now as well. But we can also make use of their rest and nighttime for calorie intake, and focus their daytime energy on other things.
The fundoplication is an added measure to help prevent reflux and vomiting. It made their surgery longer, and is why the Dr wanted a slow cautious increase in their feeding volumes. But it will help us reduce the likelihood of aspiration pneumonia (which is what made Landon very very ill in late October).
At my request we revisited their diet. Instead of huge amounts of formula, we are now trying pediasure. Their calorie count hardly changed, but we were able to decrease their total volume.
They have handled all of the above well! I drove up after church today and couldn’t believe how alert and feisty they both were. I’ve cuddled with each of them, and am now typing on my phone while respiratory therapy works with them.
We are on track to take them home tomorrow! If all goes well, K will have three more attendees at his Christmas Program tomorrow night!
Wish us luck!