A plan has been made

After a few weeks of waiting, watching and doing tests we finally have met with the ENT surgeon and created a plan for Madison. He spoke with us today and after looking at the sleep study and CAT scan they have learned more about the severity of her PRS. They are saying that her airway is blocked about 80% of the time, this is also why we have seen her feeding & breathing decrease over the past week or so as she is guarding her airway instead of swallowing her milk. So they gave us the different options out there (mainly the options I listed in my last post) and after we discussed them with the surgeon he & we felt that the jaw distraction surgery will be the best path to go down. As I discussed in the the last post this is when the they saw the jaw in half and place a device on her face that will pull the jaw out also bringing the tongue forward and opening up her airway. they will extend the jaw over a 14 days period, after which they will keep the device on her for 2-4 months (she should be able to come home 2-4 weeks after the surgery). The surgery is going to take place on Monday night or Tuesday morning at PCMC. They also may need to intubate her after the surgery for a few day until the jaw comes forward enough for her to be able to lay on her back. Amber & I are very happy that Madison is getting the surgery, mainly because this will permanently fix her issue and not just band aid it for a few months or years, and while she will still need the cleft pallet repair in 9 months this will also give her the ability to be a normal baby, lay on her back and not struggle to breathe & eat. I will attach a picture of the jaw distraction device, it is a little scary looking but it does the job. Thanks again for your support!