Today was a HUGE milestone for Tristan. For the first time EVER in his life he has consumed over 1,000 CALORIES ORALLY!! He has NEVER EVER even come CLOSE to that before!
It seems like I have f-o-r-e-v-e-r been bugging ouR therapists and GI to get on board with me taking a good chunk out of Tristan's feedings at the same time that we start him on Periactin (appetite stimulant.) Both of them have always been so hesitant to try it. They always just want to go slow and simple.. No more than a 10% drop if they DID allow that, but for YEARS it has been, "Let's just wait for him to start eating more and then decrease his feedings." Uh.. no... that just doesn't work. And he's proved that to you time and time again! HE'S FIVE! The longer we just sit here and wait for him to do something about it the harder it is going to be for him to ever wean off of that tube willingly.
Don't get me wrong, I <3 his tubie! He would NOT be here without it! But as far as we know he HAS the ability to eat, we know he can tolerate real foods (where formula he cannot) and we know just sitting on our hands and waiting for him to change ISN'T ACTUALLY GOING TO CHANGE A THING! He's fine with not having to eat himself. So why just continue to sit here and wait? Every single appointment I have been bringing it up that I wanted to push this. I was tired of sitting around and waiting. There was NO WAY he was going to eat when he's being fed over 50oz every single day through his tube - hell I'm sure I probably wouldn't eat if I was being fed that much! So we are ready for something different.
Right now I am desperately hoping this keeps going in a good direction. I feel like we can loose it at any second and I don't want to let myself really get happy and enjoy what he is doing. I don't want to be crushed when he decides he just does NOT like to eat and would rather have his tubie. He has been on this medication before, and it made him hungry and his eating definitely picked up last time, too... but it didn't stay up there. It didn't take long before his eating decreased and I had to bump his feedings up even more then where he had been. Before we were told they want us to wait until he was consistently eating a good amount before dropping his feeds any. Right now I say NO. I am letting him take the lead on this... if he eats those calories then he is NOT getting them also tube fed to him after. He COULD use some more meat on his bones, which is where I struggle. It would be nice to try to sneak in some more feedings overnight where he wouldn't notice as much just to try to put a few extra pounds on him... but I also know that is sabotaging his eating. I KNOW that means he will not eat as well the next day.. which leads us down this spiraling path.
Tonight I added up all of Tristan's calories (1,234.64 calories BTW!) and was aiming for 1,800 calories total (which may change after I talk to the dietitian... this boy burns a lot of calories!)... So I told RJ to aim for 190mL's per feeding, which would be 570mL's total for his night feedings (We're currently doing 3 feedings overnight) He wanted to keep put him at 600, and I am pretty sure he got upset with me when I said no, just do the 190 per feeding that I figured. :/ But I don't want to sabotage him like I have done in the past. HE EARNED THOSE SMALL FEEDINGS AND I AM NOT GOING TO TAKE IT AWAY FROM HIM. I know he's just not understanding me right now :/ He's never really been involved with this part of it... Heck, he hasn't taken Tristan to therapy since he was literally a baby and I was still working and he was laid off. So I think he's still back where I was in the beginning the first time we tried to wean some... try to sneak in a little extra, what could it hurt? But it does hurt. And while it may not seem like a big thing to just give him those 30 extra ml's... sure he probably wouldn't really notice just one ounce.... but I can't let myself do that or it will turn in to more.. or it will be just leaving him where he is at for awhile even tho he did eat even more today... which he in turns eats even less since he already had those calories.. then even less... and then right back to where we were before... Sounds silly, I know, but this is what is going through my head. This has been a battle for years and I cannot let myself, the docs, and the therapists continue to make the same mistakes over and over again expecting different results. Hey, isn't that the definition of insanity?
....Well off to make myself get some sleep. Hopefully tomorrow goes smoothly. Please keep your fingers crossed for Tristan! I see all of these other kiddos that we have known for years getting their tubies out.. and while actually taking out his feeding tube isn't an option at this point in his life it would make things so much easier if he didn't have to rely on it for almost all of his nutrition and fluids each and every day. I want my boy to love eating food! I want him to WANT to eat food! I want him to be HAPPY!