Yesterday was such a long day! But I feel like we got some good information. First for some good news.....we finally got the results of her urine genetic screening...NEGATIVE! Yay! The test does not completely rule out any sort of genetic or muscle disease....but gives them a good indication if there was one. (They would have to take a muscle biopsy to know 100%).
Our main issues were the vomiting and her weight. After they looked at her growth over the last 3 months she was happy with where she was considering all she has been through. Although she has pretty much not gained any weight since her surgery which was 5 weeks ago. Once again...she feels like if we can control the vomiting her weight will not be an issue. She actually has a ear infection so they gave us antibiotics for it. She may be running into ear problems because of all her vomiting. The fluid is draining down into her ear canal. So...basically all the extra fluid is causing the ear infection.
We are trying a new formula that is even more broken down than Nutramigen. The hope is that the formula will be easier and more quickly digested. If the formula does not work we will be trying a new medication called Reglan. It helps to speed up the digestive process. The surgeon says it either works amazingly well or will not affect her at all. If neither one works.....well lets hope one does! There are two different surgery options as a last ditch effort. But all of our hopes are that things start to settle down and we can get everything back under control. We had her vomiting under control for a few weeks before the surgery so we know it is possible!! Hopefully we can just get back to that!!
Mya also had more granulation tissue build up on the top of her button. It is pretty much the body's way of healing the area from a foreign object. Not all children have it....but it is not uncommon what so ever. The surgeon treated it again which was absolutely horrible! By the end of the day Mya had just had it!! She slept the entire ride home! Poor girl!! So no more baths for a few days until the built up tissue falls off and heals.
Dr. Dusick said she is going to be reviewing her entire chart, tests, labs, etc. We still do not know the exact reason for her aspiration, feeding issues, and low muscle tone. I am convinced we will probably never know what caused all of this. She is going to let us know if she wants to run additional tests before her next appointment. But so far all the tests they have done the results have been negative!
We are to try the formula and then Reglan if that does not work and be in contact with them of how things are going. We are to also cut back her solid food intake to just a few bites a day until we get the vomiting under control. (Which we have been doing this past week any way)
What an emotional day!! We go back to the physical therapist again next week and to see Colleen (her feeding therapist). We need to get to work on her drinking and eating skills again! We want this little booger to be able to eat Birthday cake in a few months!