Thursday, October 8, 2009

Help With Tube Weaning Please

Well . . . *sigh* . . . unfortunately after her appointment today, Rachael now knows for sure that Children's Mercy's Neo clinic is not interested in trying to aggressively wean Jimmie from the tube. They are ready to book the g-tube surgery. Rachael is not! She has done enough research to know that it is possible to wean a child like Jimmie. She just needs medical support and help for it to be attempted safely. She would always regret not trying to wean him if she just resorted to the g-tube now. She feels that after a good attempt at weaning- if it's unsucessful, then she would have peace about moving in the g-tube direction.

So now the search is on. Dr. S. will try and help Rachael and Justin find someone experienced and qualified to help them try and tube wean Jimmie. Pray that there is someone here in the city that is confident and willing to take on this task.

So much has to be considered. Jimmie has to be able to get hungry and learn that when he eats and drinks he feels better. However we don't want him to get dehydrated or malnourished in the process. This is why we need a medical proffessional to help oversee everything. Including bloodwork, possible i.v. nourishment, measurements, supportive occupational therapy and nutrition help. And just encouragement and assurances. Moral support from someone who has "been there done that" would just be so helpful for Rachael and Justin right now.

The Graz Clinic email coaching program in conjuction with a supportive Dr. would offer those things, but it might not be covered by Rachael and Justin's insurance. It would just be wonderful to find someone here- in the flesh- that would take on this task.

So that is the big prayer request of the day. Help With Tube Weaning Please!!! (-:

We are so thankful for your support and prayers! Seriously- we are! Every prayer and comment is a boost and a help to Rachael and our family.



  1. I think about you guys all the time and pray about Jimmie and his family every night. Hang in there. You know I'm always here to talk if you need to.

    Praying you find the right doctor and can do this the way you're most comfortable.


  2. We're praying for your guidance and wisdom. Our Great Physician knows exactly what and whom you all need!! I'm glad you're sticking to your guns instead of rushing ahead with the surgery. We're praying that all goes well and smoothly, and no surgery for Jimmie!!

    We love you!!
    Adrian and Janelle

  3. Well, I hope that you can find someone around. If not KC, then maybe somewhere else in the midwest? I wonder if your insurance would cover out of state? And like Janelle said, I am glad that you stuck to your guns too. You know what's best for Jimmie. Why subject him to surgery if you haven't exhausted every possibly?

  4. Good for you, Rachael and Justin. YOU will ALWAYS know what's best. With that, we are praying for you to find the right medical assistance, nearby, and quickly.

  5. Still praying for Jimmie.

    Denise F.

  6. Rachael and Justin, you are such great examples of what LOVE is all about - wanting the best for Jimmie and seeking it at the Lord's feet! My prayer is that the Lord would reveal His perfect plan for Jimmie in this current situation...and that He would give you perfect peace casting out all fear and doubt! Do all you can while waiting upon the Lord.

  7. Praying that the weaning situation will work. And praying just that all will begin to go in the best direction.

  8. This probably sounds really stupid but...can they put his milk or formula into a syringe and force him to drink like we do with medicine? I know it would take a long time but he wouldn't have to suck on anything? I told you it was stupid...

    Kathy Barnes

  9. No Kathy- that's not stupid. Syringe feeding is a legetimate thing to try. The syringe, sippy cup and spoon are ways we have been able to get Jimmie to take some fluids by mouth. The sippy would be the best because it's the long term developmentally stable choice. So the sippy is what Rachael primarily gives to him and works with him on.

    Thank you for your support!

  10. Hi. My name is Julie and I have a sweet little girl that we are trying to avoid a G-tube for. We have done a Lot of talking to a lot of doctors and such and I hope that I can say something that might help a bit. I am a friend of Tammi's and she asked me to respond. First of all we have been told that the only way to teach a tube fed baby that eating fixes hunger is to take them off of continuous drip feedings. These feedings actually damage the liver because our bodies aren't made to have food constantly in our stomachs. What we have been told is that you give them food by mouth after at least a two hour break of no food and then at the same time or right afterward you give them the rest of what they need through the tube. Then you wait 2 hours for BM feedings and 3-4 hours for other foods before you give them more.
    A lot of it depends on why he has the NG tube in the first place. Does he aspirate? Or is he just not gaining weight fast enough? If he aspirates you want to get in touch with a good speech therapist who can help to teach him how to swallow safely. We had good results with a therapy called Vital Stim that uses electrodes to help stimulate the swallowing reflex. It works best for children who have decreased sensation in their throats and just let the food "hang" before swallowing.
    The problem with the NG tube is that it can cause a lot of swallowing and scarring issues. The G tube is sometimes easier to wean from because it is easier to take food by mouth. It is also an invasive surgery and of course I totally understand trying to avoid it as that is where we are right now.
    Early intervention will send out OT's and SLP's to your home for 5-100 dollars per month depending on your income. Make sure you request specifically someone who can help you with the weaning process. I have a nutritionist named Dana Weber coming out too. She has worked with quite a few families in weaning their children off of different types of tubes. We have had a lot of help and support. Let me know if you need any more information. My email is Good luck and we will be praying for you.