Today was such a great follow up ~
Jax weighed in at 23 lbs, 7oz - so he maintained his weight! Jason and I were sure he lost weight, but I think we were so worried about it, that we had it in our heads that he was getting smaller. When really, he's just so tiny it's easy to think that. So that part of the appointment was great.
Then I had a meeting with the entire feeding team (nurse, psychologist, speech therapist and dietitian) where we went through Jax's feeding behaviors at home, his volume acceptance and his overall health. As for his feeding behavior, we discussed his early meal vomiting and I was assured that we're handling it correctly with slightly ignoring it, yet being ready to support the actual puking. I told the doctor that I've been getting "annoyed" with it and feeling guilty, but she said that's how I SHOULD be portraying it. Don't give negative or positive attention. Don't ask if he's okay, but ask if he's done yet. So I guess what he's doing is normal, and he's basically having a physical reaction to his feelings about eating.
Jax's volume acceptance is supposed to slowly but surely get better. The more food he takes at each meal means less food at night through his tube. This basically is a natural self-weaning process that happens when his body is ready.
And finally, his health. I HATE putting this out into the universe to come back to bite my butt, but Jax's health since January has been amazing. Even with a bug in the house (Brady's fever) he's been fine. I'm sure part of it was being out of school for an immune system break, but I also wonder if his body is receiving nutrients differently with real food? I don't know, but I like it. And yes, you can expect a report that he started a cold any day now that I wrote that all out!
The team observed me feeding Jax his lunch. Brady apparently just hates the hospital because he was totally nuts through the whole thing. Jax ignored him and ate his lunch fine. He had a few gags in the middle, but I ignored and we got through it fine.
We saw the GI specialist after all of this and the doctor was amazed with the results from the clinic. He said Jax went from being 100% g-tube fed, to 32% in 5 weeks! He said Jax got his big push and now has the tools to keep going at home with out-patient support. I told the doc that Jax's stoma (the hole that his tube is inserted into) bleeds easily with friction. He looked it over and said that if Jax was going to have the tube long term, he'd need to have it repaired, but since he doesn't think Jax will have it past this year (OH MY GOD) that he wants to leave it alone until he will have it surgically sealed up.
I asked the doc to back up and he laughed. He said that no one can give me a time frame of when Jax will be tube-free, but he thinks it will be "months" and not "years". He said that Jax will need to intake all his nutrition, hydration and medication orally for two straight months and then they're pulling the tube. The sooner you treat the child like they don't have that port, the better. If he gets sick and needs an IV line, well, "welcome to what most people have to do" is what the doc said when I asked!
Since Jax's stoma site has prolapse pushing through (tissue from the stomach lining), he will need it surgically closed and cleaned up. (um, are we really talking about this like it's going to HAPPEN?!)
The doctor said that obviously surgery is never fun to go through, but in the long run, it will be great for Jax because the scar will be very slight and nicely sealed up then.
So... not to get too ahead of ourselves, the plan is to continue doing what we're doing. Expect and deal with a toddler pushing the limits. He's allowed bad days and so are we. We should see more good days than bad, and I can always call the doctors for advice between appointments. We have to remain giving only smooth foods until we're given direction from the doctors to work up on texture. I think that will be awhile yet. We will see the psychologist and dietitian in 4 weeks for the next follow-up and then the entire team again in 3 months. The GI doctor said he is really excited to see what Jax is doing at that appointment (July 2).