I owe a post on the G Tube debate.
But to be perfectly honest, it's just too much right now. I have had loads upon loads of really wonderful, intelligent, and informed input and I am so grateful for my little slice of the CF community. Having said that, I still don't know how to feel. I"m not mopey about the situation, just completely overwhelmed at the decision I am making for someone else. And I can't lie, I am emotionally exhausted after these past months of desperation at every meal time. Hope is a marathon, not a sprint.
What I really want to do is explain myself, the reasons I am considering the tube and the reasons I want to hold out. In all my wisdom I still somehow hold the naive notion that if I just explain myself the right way people will 'get me'.
I'm not GOING to explain myself.
But I will give you this. I'm a hold out, and I will be until I feel I can't anymore. I am lucky enough to have a medical team that, while they feel the tube is our best option now- is fully supportive of my decision to wait a little longer. We negotiated another two months of trying to gain without the tube. If by that point we have seen no significant change in the growth trend....well, I'll cross that bridge when I come to it.
There is a strictly regimented, every 3 hours feeding plan in place, weigh-ins every two weeks, weekly calls to the dietitian, and journaling of every bite of food. Prevacid dose has been increased again in an attempt to alter the pH of the digestive tract and enhance the efficacy of enzyme therapy. I have J's first appointment at Acupuntcture Wellness Center here in Fort Worth tomorrow to try acupressure and some esoteric therapies (again, not going to explain everything, but we are looking into non-invasive, non-chemical treatments). I have started doing Reiki on him every night and have called anyone with some spare mojo to send it into our healing circle.
Perhaps it's a small struggle, compared to some. It's definitely not the worst thing that could happen, and we are otherwise still so blessed that it's kind of ridiculous. Even this is a first world problem. But the pressure is great and I have been struggling to keep perspective. The stress is showing in my marriage, and the emotional fallout from not feeling like I have my partner certainly doesn't make things easier.
It gets better. Nothing stays bad forever. We'll figure it out, we'll learn from it, maybe we'll even learn to help other people in this position. I will turn something good out of this, just not today.
But to be perfectly honest, it's just too much right now. I have had loads upon loads of really wonderful, intelligent, and informed input and I am so grateful for my little slice of the CF community. Having said that, I still don't know how to feel. I"m not mopey about the situation, just completely overwhelmed at the decision I am making for someone else. And I can't lie, I am emotionally exhausted after these past months of desperation at every meal time. Hope is a marathon, not a sprint.
What I really want to do is explain myself, the reasons I am considering the tube and the reasons I want to hold out. In all my wisdom I still somehow hold the naive notion that if I just explain myself the right way people will 'get me'.
I'm not GOING to explain myself.
But I will give you this. I'm a hold out, and I will be until I feel I can't anymore. I am lucky enough to have a medical team that, while they feel the tube is our best option now- is fully supportive of my decision to wait a little longer. We negotiated another two months of trying to gain without the tube. If by that point we have seen no significant change in the growth trend....well, I'll cross that bridge when I come to it.
There is a strictly regimented, every 3 hours feeding plan in place, weigh-ins every two weeks, weekly calls to the dietitian, and journaling of every bite of food. Prevacid dose has been increased again in an attempt to alter the pH of the digestive tract and enhance the efficacy of enzyme therapy. I have J's first appointment at Acupuntcture Wellness Center here in Fort Worth tomorrow to try acupressure and some esoteric therapies (again, not going to explain everything, but we are looking into non-invasive, non-chemical treatments). I have started doing Reiki on him every night and have called anyone with some spare mojo to send it into our healing circle.
Perhaps it's a small struggle, compared to some. It's definitely not the worst thing that could happen, and we are otherwise still so blessed that it's kind of ridiculous. Even this is a first world problem. But the pressure is great and I have been struggling to keep perspective. The stress is showing in my marriage, and the emotional fallout from not feeling like I have my partner certainly doesn't make things easier.
It gets better. Nothing stays bad forever. We'll figure it out, we'll learn from it, maybe we'll even learn to help other people in this position. I will turn something good out of this, just not today.
i have been reading about the Gtube and its short/long term implications since last week when you mentioned it. its no wonder you and mike are under so much pressure. nobody should have to make such an incredibly tough decision for their child, and it breaks my heart that jackson may need it- and that you and michael will have to make that decision for him. i dont know what i feel more, heart-rending sympathy for your situation, or awe and admiration for how you handle it- head on and chin up. y'all are TOUGH dammit, and there is no doubt the little guy has inherited this trait. he's got the fire. whatever you have to decide, it will be the right thing. you are an inspiration lil sis, and i cant help but think (because you've always been so damn strong willed, and a lil badass) that hard as it may be, you are perfect for this and your life built you up for it. you are a fighter, you are in Jackson's corner, and nobody could do a better job there than you.
ReplyDeletemiss you all,
brandon