Mark just called me at work to tell me that Nathan had pulled out his NG tube sometime during the night... the brand new NG tube he just had placed hardly 12 hours ago!
Each time we have an issue with the NG tube leaking, coming disconnected, or being pulled out I am closer and closer to wanting him to get a G-tube! We were already planning on discussing the possibliity of the G-tube with Dr. Williams on Tuesday next week. Now the conversation is going to be talking about the certainty of getting the G-tube and when it can be done. Mark and I are hoping the same time of his next scope in early June a couple of weeks from now.
When the home health nurse came out and weighed Nathan yesterday, he still weighed the exact same as he did 8 days ago... that means that those nights we had problems with his NG tube connection coming loose and his formula going all over his bed and what had made it in to his tummy pouring out of the disconnected tube made a big difference. It made the difference of him not gaining a bit of weight over the course of the week. Every tiny drop of that EleCare is so important to Nathan's nutrition right now and we feel that the G-tube will be a better way to get it in him.
We would be dumb to think that the G-tube is without complications of its own. We know things will never be as easy as feeding our child "normally"
would be. But other parents of kids who ended up with G-tubes all say that their live's and their child's improved dramatically for the better once they took the leap.
Mark and I are ready for the next step in this journey with our son.
G-tubes are a blessing! One of my good friends daughter had one for about 3 years and it made all the difference in the world.
ReplyDeleteIt's strange to imagine how a surgically placed feeding tube into your child's stomach can be a blessing, but that is what we have heard over and over again. We are, as any parent would be, a bit nervous about it, as we were the NG tube. But we know with time it will be our new normal and it won't be such a big deal!
ReplyDeleteBy the way... I put Nathan's NG tube back in by myself this morning... he laid so still for me, and he didn't even cry. I am so proud of him! A month and a half ago, I would have been a major wreck and probably wouldn't have even attempted it. Just another reminder that I can handle anything I need to when it comes to taking care of our sweet Nathan. A mother's love is an amazing and powerful thing.
Isn't it crazy how much you can handle as time progresses? We are getting an NG tube placed in about an hour. Before I would cringe at the thought of having to tube feed him, now we are embracing it with open arms.
ReplyDeleteYay for placing the tube by yourself. :)
I am so impressed with you and Nathan! Such a great team:) I agree completely that having an artificial way to feed a child should never be part of your blessings list. It shouldn't even be part of your knowledge base. My friend's daughter used her tube for about 3 years. Now at age 7, has been tube free for 2 years and doing great. I've still got my fingers crossed that the NG tube will give his digestive tract the rest it needed and he's looking great at his next endoscopy!
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