Handsaker Family Blog: Day +322

At out last SCCA clinic appointment a taper of Georgia's NG feeds were discussed, we agreed on a schedule that would take approximately two weeks. The doctor noted that if she pulled the tube out the next day he wouldn't put it back in... I jokingly clarified - wait, if she pulls it out or if I pull it out? As much as I wanted to be done with the tube I knew it wasn't smart to pull it out and go cold turkey on getting Georgia to eat and drink as much as she needs to. Over the last (almost) two weeks Georgia has done well with eating and drinking, we talked to her about her "line" going away and that to make this happen she needed to eat and drink. Day to day her eating is consistently inconsistent which I hear is pretty normal for toddlers, overall I think she's doing fine.

When the tube was first placed I stayed adamant about Georgia taking her meds by mouth, with the addition of prednisone and three other medications as well as restarting calcium and a multivitamin (those needs were being met through the formula) I have defaulted to the tube some... this will be another transition for us.

For over a year I have hated the idea of a feeding tube, it was first discussed last October and I dug my heels in on more than one occasion to avoid it. In September it was brought up as a way to avoid prednisone, then weeks later we found ourselves having both, it felt like I'd lost two battles. Looking back the tube was the right thing to do and although it was hard on Georgia I don't regret the choice.. within days Georgia's skin improved dramatically, she's grown taller, has put on weight and is developing like a normal two year old.

Once we'd agreed to have the NG tube placed I asked our doctor how long she thought Georgia would have it, she said, 4-6 weeks... today, 13.5 weeks later I pulled the tube out. You'd think I would be excited but really what I feel is pressure - to make this work, meaning getting adequate calories and hydration in.. to make sure all meds are taken, to make sure we don't have to do this again. I will resume having anxiety before setting her on the scale at her appointments and dread discussions that cover how I as her mother am meeting the needs of my child. I am hopeful that being tube free will have a positive impact on Georgia's eating and that we are heading in the right direction.

This morning I sat Georgia down and told her that she had done a great job eating and drinking and that it was time to be all done with her line... after I pulled it out she picked up and I had her throw it in the garbage. This afternoon Georgia wanted to change her shirt and looked at me and said "tape?" her line was always taped to the back of her shirt so she needed help before taking it off... I said, no honey, no more line and no more tape.... I think it will take a little while for things to sink in.

Georgia demonstrating what she needs to do to be line free...

and yes, we often eat on the floor.

The time has come...