We had an awesome trip to Cincinnati! All the doctors and therapist we met with were great. The main focus of our visit was to get a second opinion about her progress and vomiting.
I feel like they are more in tune with our needs at this point in our journey. Riley is not a bad hospital and the doctors are good at what they do there. I just feel like we are not seeing the entire picture. I feel like we are just waiting around until Mya finally outgrows her problems and we do not even know for sure if she ever will! I just want my daughter to live to her full potential. In my opinion if she is safe to eat baby food and drink thickened liquids then she needs to be doing so!! She is never going to get off this feeding tube if she never starts eating!! But.....she won't eat if she is vomiting multiple times a day and has tube feedings every 3 hours!!
Dr. Dusick at Riley pretty much said here is the ounces she needs in a day, try the new formula, if you want to give her Reglan talk with the surgeon, and see you in October! Wow!! I need a little more help than that!!
The plan from Cincinnati is have Mya come back in 4-6 weeks for a scope and probe study. They will put her to sleep and look inside her esophagus, stomach, and intestines. They will see if anything abnormal shows up...look for inflammation from vomiting....look for causes of her aspiration...look for causes for vomiting...etc. They will then put a tube down her nose (similar to the NG tubes she had in for over 4 months). She will have this tube in over night and will measure several different things. It can tell us how much reflux she is having, how high up in the esophagus it comes up, how strong the acid content is, if she is aspirating the reflux into her lungs, etc. The team feels that these two additional tests can tell us a ton of information!! After the results we will go from there.
In the mean time...we are going to gradually increase her caloric intake from 24 cal/oz to 30 cal/oz. The hope is the more concentrated the formula the thicker it becomes. (Similar to the idea of thickening formula with rice for children with reflux) We will due this hoping she is able to keep the thicker formula down. If this plan does not work....they have suggested starting Erythromycin instead of Reglan due to the side effects to help her stomach empty quicker. If meds do not work we will try a paste as a formula.
If the paste does not work the next step is to give her baby food consistency foods through her feeding tube. The last alternative is surgery to tighten the sphincter so she can not throw up or move her feeding tube to directly into her small intestine.
Wow!! A lot of information!!! Once we are able to get her to the 30 cal/oz formula she will be backed down to only 6 feedings a day!! Which means....feedings every 4 hours!! Which means...more hunger drive! When she is actually hungry and not throwing up she actually does pretty well with eating! So...for now that is the plan! The GI doctor made it very clear that we need to communicate with him. Which I love!!! He said if I don't hear from you I am left to assume things are going well. So...we have to call if the plan is not working to move to another option!!
So hopefully....less bottles per day at a higher calorie content, more eating by mouth, and less vomiting!!! Sounds like a good plan to me!!!