Hello to Everyone,
Paul and I brought Namine in to see Dr. Denni this past Monday to find out when she will be able to have her jaw distraction done, so we can remove the trac and g-tube. It was mostly bad news but some good news. We have to ween her faster off of the vent then we have been doing. She needs to be off of the vent completely for two months. When that is finished then they will run a series of tests to find out if the jaw distraction is what she needs and if it will help. The good news we have been pushing Namine a little harder to come off of the vent and she has been doing fantastic. She is up to about 8 hours off of the vent. She still has some difficulty with the HME but is slowly working her up on that as well.
More good news. We had a cardiac visit on the 22nd after about 3 other visits and all on her HME, I didn’t think was doing very well, she was stating at 97. So that is just AWESOME!!!! And that stating is not even on the full amount of oxygen she needs. When she is on the HME the portable is supposed to be at 6, but we run out to quickly so Lori told us to put it at 3, and she was doing fantastic. Namine also kept pulling the mask off and chewing on it so i am not even sure how much oxygen she was getting. But like I have said in almost all of my posts keep storming heaven because miracles are happening with this little girl. She has touched the lives of many and because of her courageous story lives have been changed.
We love you all!
Jessica, Paul and Namine Eiche