Well things again took a turn for the worst...Hunter had a pretty bad weekend and just did not seem to be comfortable. Nick and I talked and we decided that we needed to make a call on Monday. I had Nick call his Wings doctor to talk to her about the comfort meds since Hunter is having difficulties breathing and needing more and more O2. He is losing more control of his throat and it seems that this is were he will stay again, going back to his underlying diagnosis that is progressing. So Hunter will be given 2 types of comfort meds as needed. He will be seen Tuesday by one of his Wings RN's to check on him. I emailed his two main doctors to let them know what is going on with Hunter (Dr. Weisenburg & Dr. Smyser) they emailed us back and agreed with the Wings Team that this is the best for him to keep him comfortable, they were both deeply sorry and keeping us in there thoughts. I also let them know about the seizures not getting any better and I asked them again if they have been in touch with the Doctors doing the research and they said that they are going to talk with them today and call us sometime tomorrow afternoon to talk more about options for the control of the seizures and to let us know what they hear from the research doctors if anything???
So as for now we are still in Holland were we want to stay for as long as possible, but all we can do now is keep holding him, loving him, and doing all that we can for him. He is our "Angel" sent from above!!!
Please keep Hunter in your thoughts and prayers...