Over the last year as we changed feeds and tried new things I specifically asked what fluid intake Nate needed as we were reducing milk intake (he was struggling with air and his ng) and we were told " well you'll know if he's not getting enough" . Well clearly we didn't. I mean he has been functioning and seeming ok but it can't be good for him can it? Crying at night- have we found a potential cause in thirst?
In hospital we tried overnight feeds ( which he hasn't tolerated in the past, but thinking back that was with his ng tube not gastrostomy) and combined this at home with new hand splints that ( so far) he can't get off. It's a slow overnight feed which means he needs less ( or no) milk during the day. Pushing more purees and water flushes for fluid intake and guess what?.... It's actually going well. I think overnight feeds are the way forward.
When Nate is awake during the course of the day he swallows such a lot of air that it requires frequent venting, however Nate is far more settled during the night. This make be linked to him recovering from his infection, but I'm staying positive. I discussed my wish to totally BD with the dietician at hospital and she said that basically dieticians aren't allowed to officially endorse BD ( blended diet) but she gave an encouraging look and pointed me in the direction of FB and internet support groups. ( already sorted that bit out). So something to think about anyway.