the past few days have been eventful to say the very least. i mean...for those of you who read our blog regularly, i am certain you are far from shocked. it seems as though the calm always comes right before the he storm. as i said in the last post, gavin's feeding tube was out. yay! well, we had tried taking it out for a bit but he just wasn't getting the volumes that he needed to gain weight so we decided to put it back in. gavin also started teething...which is AWESOME. however, along with the teething comes a lot of excess saliva and since gavin has a tough time sensing that there is stuff in his throat all the time (because he was intubated for so long), he has started gagging randomly when he gets too much of it back there. the only problem is, if he anything in his stomach (formula), it is going to come right up. the tube that goes down his nose and into his stomach doesn't weigh a lot and when he gags, even the slightest, he starts throwing up and then can't stop and ends up throwing up his entire feed. so....that has been happening about once a day (sometimes more). gavin hasn't been gaining weight because of this and he needs to gain weight in order for his lungs to grow and develop. we would love to be able to give gavin all of his volumes by bottle (which we thicken anyway) but he doesn't have the strength to eat that much. he also seems to be getting some oral aversions since he has been throwing up so much lately...poor baby! it just breaks my heart.
we went to see his pulmonologist yesterday and his pediatrician today and we were referred to a great gastroenterologist in scottsdale. we will be meeting with her next week to come up with a different game plan for gavin. right now, we don't know what that is going to be. it could be a simple fix (hopefully) like a different high calorie formula. we already have him on super high calorie formula though. we know it isn't a lactose thing so at least we've ruled that out. another thing she might do is an nd tube instead of an ng tube. an nd tube goes a little deeper and is weighted a bit more and hopefully wouldn't come up as easy as an ng tube. the only problem with that is that placement has to be checked with an xray. i love being able to insert his ng tube and check placement if he needs it. the last thing we need this winter is to be frequenting hospitals around the valley! :) one thing we want to avoid is a gastric tube, which is surgically inserted into his tummy. i just don't think we are to that point quite yet and we definitely want to explore all of our options first.
gavin gets his first synagis shot tomorrow, which is the rsv antibody. we are looking forward to getting some of those under our belt since there have already been cases of rsv in the valley. gavin cannot get rsv. as blunt as this sounds, it could kill him. we ask that you pray against that specifically please.
i will be posting some new pictures of gavin tonight! be sure to check back in!
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