I’ve chronicled our woes with feeding Andrew here, here and here. In a nutshell: despite intensive feeding therapy, Andrew is not physically and cognitively coordinated enough to eat by bottle and mouth in a comfortable, enjoyable, and consistent manner. And with the results of recent swallow studies showing that he aspirates fluids into his lungs during feeds, it has gone beyond mere coordination and pleasure issues to a medical one–it is not safe for Andrew to eat by mouth. I guess this didn’t come as too much of a surprise considering how much choking, gagging, and spitting up was involved with pretty much any feeding attempt. This week, we decided to get Andrew a feeding tube and made the decision that Andrew will never feed by mouth again. We returnedhome from the hospital yesterday.
The hospital stay sucked. I’m not sure how else to put it. But it did. Andrew was also in a lot of pain and was on zero pain medication after the surgery. We had to harass nurses to harass doctors to put the order for morphine in. Two days after surgery, he was still in a lot of pain. Three days after surgery, today, the pain seems to have subsided and Andrew is smiling again. So if you’ve found this blog researching what gtube surgery might be like, just know that despite what the surgeon tells you, it will hurt and serious pain meds will be needed beyond Tylenol.
So, what’s it like at home with Andrew and a feeding tube? Pretty great. I know, that sounds like an odd thing to say. As parents, we knew that feeding Andrew took up hours and hours and hours of each day. But exactly how much time it took didn’t really hit us until today when feeding Andrew took less than five minutes for each meal and we had so much… time all of a sudden. But before we get into too much about how much more relaxed our household is, it’s important to note that the months leading up to the decision were wrought with varying levels of turmoil. After all, any parent can share what a rewarding feeling it can be to watch their child eat. Any person can share how much they love to eat and what a pleasure it often is. For our Andrew–whose body is broken in so many ways–we relished that he could still eat by mouth at all. It was the one normal physical thing he could do, whatever that means, even if he was terrible at it. And in the end, everyone was miserable with Andrew suffering the most. So as I was saying, things have been pretty great with Andrew’s feeding tube in place. The stress of feeding Andrew has been removed and he is so, so, so much more content with a full belly that did not have to involve choking, gagging and crying to obtain. This was the right decision, indeed.
There is much more to update about. But until next time, here are some photos from our recent hospital stay: