Our long awaited follow-up appointment

I am going to attempt to make this somewhat brief but here is an abbreviated version of how the appointment with the Mito doctor went today. First of all she did a wonderful job explaining something very complicated. Mitochondrial in itself is extremely complicated. But in Megan's case she discussed several things. She said that Megan is multi-complex, meaning Megan has all the complexes of Mito disease except for Complex V. Megan also has dysmotility. This explains why Megan has such severe vomiting episodes. She basically just builds it up and then has to get rid of it even with her tummy tied off. She was still very shocked that Megan threw up like that even with a fundoplication. She said that Megan has distress on her kidneys as well. While her Kidneys are functioning well, they have also been put under a lot of stress. She advised that we would more than likely not try Megan back on the other Mito drug she should be taking because of the severe diarrhea that it gives her. While the medicine if supposed to help with the Mito disease it could potentially cause her way more harm than good. With the disease any stress to the body can cause progression of the disease. As most of you know and Jim and I have experienced MANY times, Megan gets sick very fast and VERY bad. So, she said we are to waste no time in getting her to the hospital should she become ill. She is concerned about the seizures and said that they would have a hard time putting Megan on any type of medicine because of her low tolerance for just about anything but they we need to watch and see if they become more frequent. She also advised that in the near future we will probably need to have a permanent port put in Megan to give her IV fluids more easily due to her frequent vomiting. She also wants us to talk to her GI doctor about getting a GJ tube put in her tummy because if there is any way we can take stress off her body and some how reduce the chance of Megan vomiting so frequently then we should do it. She knows Megans GI doctor very well and said to tell him that she recommended it. I did ask her if at any point we should try Megan on food just to see or if she would ever betaken off the feeding tube and she said, NO. Megan has such severe intestinal issues there is no point. Basically, she reiterated what another family put in their care page a while back. Mito kids are always right above the threshold and one thing hits them and they can spiral down hill very quickly. There is so much more that she said to us but right now our heads are so full of information that it is hard to sort through it all. One of the last things she said to us was this, I just would not plan for the future with Megan. Just literally live one day at a time and enjoy every single day that you have. One things my mom told me was while we tend to sing Jesus Loves Me mainly to our children, sometimes we need to sing it to ourselves. This is definitely one of those days!

I PRAY THAT ANY OF YOU THAT CAN MAKE IT TO MUSIC FOR MEGAN CAN COME OUT TOMORROW NIGHT. IF YOU HAVE ANY QUESTIONS PLEASE LET ME KNOW, THIS WILL BE A WONDERFUL TIME FOR FAMILY AND FUN! God Bless you guys and have a great weekend.


END OF LINE


JR