So the last month has been nuts. We have determined that Megans trach site and right ear have been infected with MRSA and some other strange bacteria...she has been battling the dog ear smell as I call it since the end of July. She has been treated with a/biotics but it kept returning. Culture finally found it. Infections Disease was lame about culturing - they said that of course it would grow bacterias because there would be skin flora in it too...ENT did it and figured it out. We spent two days in the PICU for a new EEG with an epileptologist. Seizures are off the charts again and have seen some infantile spasms. No wonder with a raging infection...that is what happens. Anything that stresses the body lowers the seizure threshhold and it creates a bunch of problems. She finished her antibiotic this morning and I have seen some smiles in the last three days which means she is feeling better. We reculture Tuesday.
Also have had new hip x rays and both hips are popping in and out.....we now will have to see the orthopedist for follow up and whatever else..I know it hurts. She has been letting out some blood curdling screams. But we will be going ahead with some botox in the legs to help relieve some of her muscle spasms that make the hip thing worse. Cant do it until January 14th though - that is the next opening. I guess it will go fast with the holidays coming and all.
This Saturday the 13th we are heading to Mayo Clinic for them to have a look and see at Meg and maybe get some new ideas - help??? I dont know - cant hurt to try and I have been having the feeling to do this for the last 2 years. So I took the inititiative and faxed her information to them and they called me back and said - yup - we would like to consult with you on her. It all fit in perfectly and it was so easy it must be meant to be. I am always hopeful. Like I said - nothing to lose and certainly she needs medical expertise far greater than I can get here. They dont understand her at all. What gets me is that because she is so pretty I get the stupid comments like "at least sheis pretty" or they think she is not sick because she is not deformed or characteristic looking of a syndrome.....ignorance I guess!
One more reason to make this trip happen is Ryans prayer for Megan.
Dear God, I hope that there is a cure for Megans mitochondrial disease in 2011 or 2012, if she is still alive to get the cure, and I hope I win my soccer game next Saturday. Amen.
Talk about making you want to cry - what a deep thought process going on there.
Ryan is finally wanting to participate in things outside of our house. He is playing soccer and loving it. Im so glad he does not feel like he has to be here all the time in case something happens. James is loving high school. He is experiencing a little freedom that is new. I remember feeling too big for my britches and having to be reigned in a bit and now I am doing it to him. But I must say he is much more understanding of it than I was. I think girls must be worse. His back brace should be able to come off around Thanksgiving. He goes to the ortho surgeon a couple of days before and I hope his fracture has healed. Then well start PT for his core muscles since he has not used them in several months. Another set of appointments!Uhhh!
Well that is about all I can think of. Anyway have to go start meds for Meg and vest treatments, etc. She is awake and waiting!