Visit with Dr. Kendall

I have been sitting in front of my computer for a while now trying to figure out what to say to truly express our feelings right now. This week has just been a roller coaster and to end it with today's visit has just exhausted our emotions. We really never go to see our Mito doc expecting any good news but you still have hope. Today we discussed so many things and my head is still trying to absorb it all while trying to process everything else that has gone on. I am going to try to explain everything but forgive me if I ramble or do not make sense.

Megan has dropped 1 1/2 pounds in a pretty short amount of time. It may not sound like a lot but for those of you who know Megan's situation, she cannot afford to start losing weight again. She is having non-stop bad potty. And Jim and I both know Megan has not been the same since she came home from the hospital this last time. She is having trouble absorbing her formula which is the cause of the bad potty and the pain she is having. She is also not able to heal properly and has a constant rash on her little body. Her hypotonia is getting worse in her legs but you would not know it by looking at her. All of this is because of her disease and she is already on most of the meds that are available to help. There is one other one they would like to try but the side effects are pretty yucky. So, here is what they want to do, which is something we have wanted to put off for a while, they think it would be beneficial to put permanent port in Megan and change her tummy tube to a surgical J-tube(yes these require surgeries). We really don't have much of a choice. The port will serve multiple purposes. They can lower the amount of formula that is going into her intestines, which is causing her pain anyways, and hook her up to IV nutrition part of the day or at night time and her j-tube the other part. If she is sick and needs hydration, we could avoid a hospital visit because she could get hydrated from home through her port. It runs the risk of infection but she runs the risk of that anyways. She said that it is basically giving Megan a better quality of life right now and making her comfortable. (These are words no one likes to hear) If it would help with her pain and keep her from losing weight then I guess we can't complain. This was just something we had avoided for so long because it was more of a last resort. Her doctor said that with kids with mito disease, each episode they have makes them weaker and weaker and they just spiral down hill quickly. When she said that our hearts just sank. They took a TON of blood from her as usual to check her usual mito stuff and some other things they were concerned about. She also has to get an EEG and MRI down to see what is going on with her seizures and tremors. So we meet with her other doctor on the 30th to get things started.
Thank you so much to Kenneth for the flowers you sent to Megan today.
They are really beautiful and smell amazing! I wish so much you could have seen the look on her face. It really made her day. Thank you mom for keeping the boys. They said you were a great student (they played school today)and for listening to me almost the whole way home. Thank you Mimi and Papaw for the cake, it hit the spot! Oh, keep an eye out for another site for Megan called, www.askmeaboutmegan.com. It is still under construction but from what I have seen it looks really awesome.

Thank you so much to those who have contributed and plan on helping with Flowers For Megan day. This means so much to us. You know, on our way home the song "Jesus Take The Wheel" came on the radio. How interesting is that? Jim was driving and I just sat there and closed my eyes. Today was not awful news but we will have to get used to it. Thank goodness for Jesus taking the wheel!
Thank you all for praying. I will try and post more later as there is more information. Tonight we are just going to try and have a quiet night at home. God Bless you all and thank you for being a part of our family.




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JR