We went today for the cleft palate team review. The appointment began with a survey of her medical history and current medications. Then we met with the social worker at Duke that proceeded to explain how if the social worker at Womens' had followed through prior to our discharge we could have had SSI and Medicaid from the beginning no questions asked. However, now that she is in the care of us (her parents) we have to apply for the programs and pray we are accepted rather than denied coverage. That infuriates me to say the least but I can't change that now. All I can do is go on Friday and apply in person at the local SSI office. Then we met with the speech department that has followed her feedings up through now. She reiterated the importance of getting rid of the pacifier months prior to surgery. She reminded us that her arms would have "no-no's" or restrictive bands to prevent her from putting her hands or objects in her mouth. The first night after surgery she will not tolerate much but will need to drink from a cup (can be small sips from a medicine cup). Nevertheless, she gave us the good news of that she can have her bottle back the next day as long as the pigeon valve is in the nipple preventing her from getting a full suction. Then we met wiht the ENT that confirmed her tube is still clogged and he will need to replace the tube at some point. Until then, for the next two weeks we are to continue ear drops.
After a lunch break we met with Dr. Georgiade, the surgeon, to review the cleft palate surgery. He was not pleased with her overall growth to this point. He explained the surgery and discussed the risks involved in surgery. He was hoping that by 8 months (or soon to be 8 months of age) she would be much bigger. He never gave a weight goal or percentage but indicated that her small size made the surgery a risk for her. So he is asking our pediatrician to offer up a suggested date of when she may be ready for surgery and then he plans to buffer that time by adding on a few more months. He said that although typically the surgery is completed by 10-12 months of age it may be that Kyleigh's surgery is going to be between 12-16 months or longer if needed.
I was actually relieved to get this information. Although I know repairing her cleft palate may make eating an easier task in the long run I agree that she is still just so small for her age. She weighed 12 lbs 7 oz at the pediatricians' office today and for a 7 month old that is just tiny! So for now, the surgery is on hold and we are waiting for the doctors' to contact us with a date that they feel is appropriate.
1 comment:
Love you...that's all I can say.
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