Here I Go Again

 

Not a real mouse on his shoulder, but it is his buddy...

      


It’s that time again and I’m never ready for it. Time for Myles gastroenterology appointment. Time for my emotions to run wild and I’m sure I’ll go a bit crazy tomorrow. It’s been almost a year since we’ve seen the GI doc in person. Through covid we’ve had virtual appointments and I’ve seemed to handle those better than going in person.

             What do I want to happen at tomorrow’s appointment? I wish that the doctor would look at tiny Myles and say, “Wow, you’re getting really tall and you’re getting pretty big! It’s probably time we take that button out now!” But in reality, he’ll probably take a look at Myles and his numbers and be happy that there is progress…but…not enough. Never enough. That’s what it seems at least. Don’t get me wrong, he’s a great doctor and great with Myles. But, it’s hard not to take these things personally as a mother.

 


             A year ago, we did a 6 month oral eating only trial with no tube feeds. The first 3 months he progressed but the last 3 months he didn’t grow at all! I felt so defeated when they told us to go back on tube feeds and his tube would remain. Myles didn’t love going back on tube feeds. He would tell me he’s going to throw up. Eventually, I went back to just supplementing feeds at night to get him to keep eating during the day. Now, he’s back to oral eating only and I haven't updated the doctor on that bit of information yet. I think Myles is doing fantastic carrying his own weight and growing.

 


              Honestly, I’m a bit worried to tell the doc that he’s only eating orally and we haven’t done tube feeds in a while. I’m worried about the judgement I may get not following the medical plan and following my mother’s intuition. I knew a mom in the small feeding tube community that finally took her own kid’s button out because the doctor never agreed with her that it wasn’t needed anymore. She took it out and let it heal enough that it wouldn’t go back in. Then the doctor is forced to decide whether to do surgery again to put the tube back in place or to fully close the stoma (hole).

 


             Don’t get me wrong, I am grateful for Myles tube. I know it saved his life and we completely depended on it at one point in time. Now, I’m hoping to move onto the next stage. This last year Myles has improved his eating in leaps and bounds. Today he ate 4 pieces of bacon! A year ago, he didn’t like bacon still. He will also drink his formula when asked to…I NEVER thought that day would come. EVER. I thought he’d have a permanent aversion to vanilla flavor and smell. But I guess not! He still doesn’t love the formula. But there is a plant-based protein drink Costco sells that he will drink and it has lots of calories. He actually enjoys that drink quite a bit.



Hoping GI doc will love this news at least. Maybe I should just have courage and simply tell him it’s time to take it out? What if he disagrees? I know I can get a 2nd opinion, but from other moms in this small community…this is the hardest part! Getting past the tube! Seems this is a hurtle with most GI docs. We’ll see what tomorrow brings. For tonight I’ll just have to have faith and pray for guidance! Only God truly knows what is best.   

Team Work








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