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.