Friday, November 13, 2009

G-Tube Knocking

Jimmie did end up getting to see that new OT that Dr. H has so highly recommended. Rachael thought she was wonderful. She was highly encouraging about how Jimmie was doing in many ways. However, sadly- she thinks Jimmie is 2 years away from eating enough to get rid of the tube. She observed Jimmie eating and she thinks he may still be refluxing. She thinks he has no oral aversions, great tongue movement and swallow, but based on her experience she thinks it'll be a while. That was sad and hard to hear.

She was super impressed with what Rachael has been doing with Jimmie. When Rachael explained how they had tried to tube wean, the naturopath, her diet, Jimmie's enzymes and probiotics (I'm not sure if she mentioned the TKM energy work, but mom applies sequences on Jimmie a few times a week) . . . This OT was like- "WOW! You guys are awesome and you are doing everything possible for your son!"

She said the g-tube versus the NG is a personal decision, but if it was her kid she'd go g-tube. The g-tube would access Jimmie's stomach from his abdomen and not go through his nose and throat. She did not push for the g-tube at all, but she mentioned sometimes kids do pick up their intake when the NG is gone.

So . . . Justin is just plain ready to schedule a g-tube surgery. He thinks it's coming to that and that it will make their lives (including Jimmie's) easier and more comfortable.

Rachael wants to give the new less aggressive weaning plan that new nutritionist gave them a try. Justin, the new OT and Dr. H are all supporting Rachael in her desire to give this new plan a try. It's 3 days on (skipping 2 feeds in a row and putting water in his tube to help with overwhelming hunger) and then 3 days off (Jimmie receiving full feeds at all of his feedings). I'm not sure how long Rachael is going to try this, but this definitely feels like the last ditch effort before scheduling a g-tube surgery. The g-tube is definitely knocking on Jimmie's door.

We know this is not the end of the world by any means and will probably end up being a good thing and a relief . . .

But . . . .

I feel sad. I'm not sure how Rachael is feeling, probably the same.

Rachael has tried this new fortifier they got from "Nature's Pantry" and every day that she's used this Jimmie has puked-badly! She's tried it a few times skipping a day in between and it is almost certainly *not* coincidental. So Dr. H. has agreed they will just trust Rachael's straight breast milk to do the job.

Jimmie is still trying to get over the new virus he got. His stools are runny, he ran a low grade fever for a couple days on and off and he has snot again. I was there this morning and though he had moments of typical Jimmie craziness and energy- over all he was more subdued than usual. All in all though he has totally handled these 2 viruses AMAZINGLY! Thank God!

Pray that against all odds and all predictions that Jimmie will respond amazingly to this less aggressive approach and avoid a g-tube.

Thank you for your prayers and support!

I'll leave you with some pictures. Thursday my parents had some concrete work done and they had their grandkids (Jimmie, Cole and McKenna) mark it. So cute . . . (-:


1 comment:

  1. i am proud of you rach for trying everything! but, even if jimmie does need a g-tube, it doesn't mean you guys failed at all. lil Jimmie just might need some help for awhile longer! i am glad that he seems to be kickin his virus's butt! that's great!
    and, i love the new driveway and patio (that is the back patio right?) the footprints in the concrete are so cute!!!! see you soon!