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Wednesday, December 5, 2012

A new plan

Dr. Cohen called me today. He had spoken with the anesthesia doctor about doing the MRI again. This anesthesia doctor he said is well trained in all the risks, dos and don'ts associated with Mito and anesthesia. Dr. Cohen said considering Jackson's current respitory status (aka THE COLD), anesthesia risks it would not be a good idea to do the MRI at this time. It is a good idea because if Jackson's respitory status decompensates at all it would disqualify Jackson from the drug trial. I don't want to do anything that would disqualify Jack, so he will not have the MRI this visit.
So the new plan is to get more baseline bloodwork in the morning. Then Jackson will get the first EPI-743 dose on Friday. There is  follow up bloodwork for a few hours after the first dose and an EKG. After all that we are free to go home. Mom and I would like to leave Fri. afternoon but I don't know if Jack will feel up to a long ride in the dreaded faraway after his two days of Mito adventures. When we leave to travel home is up to Jack. Thank you for keeping up with Jack and his new Mito adventure!

Tuesday, December 4, 2012

Ohio Trip Day 7, 8,9 10

Day 7 Friday
I heard from sedation that they were not comfortable sedating Jackson while Jackson has this cold. ****PUBLIC SERVICE MESSAGE #999,999,999*****
 Wash your hands after you go to the bathroom, cough, sneeze!!! Cover your cough or sneeze with your elbow or a tissue! Stay at home if at all posiible when you are sick. And above all people, KEEP YOUR GERMS TO YOURSELF!!!!!!
Sedation cancelled the MRI apt. Jackson had for Monday. This woman from sedation semed like it was no big deal. I was hot! I immediately contacted Hilary. She had not heard this news from sedation and made some phone calls. I heard later on in the day from Hilary, Dr. Cohen's research nurse. I found out that all was not lost. Sedation and General Anesthesia are two different things. Sedation does not intebate but General Anethsia does. If Jackson was to have a MRI it would be with General Anesthia. The only problem was General Anesthsia only does it Twice a month. Friday December 7 being the next available day. Plans were presented by Hilary to get the EPI 743 and go home without the MRI. I didn't like the idea of starting this big long 13 month process without knowing where we started from. Hilary said that they had enough info with the bloodwork and such. I was not satisfied with just bloodwork. Jackson has not had an MRI since he was about 13months old. If the future MRI shows good changes how can we know the changes were caused by EPI 743. There wouldn't be any proof that his brain didn't start off looking that way. For me, the MRI is very important. I had read that researchers had seen disease reversal on some MRIs. I am praying that this is true for Jack.  I felt strongly that the MRI was important and I was willing to wait.  Hilary contacted G.A. and waited to hear back from them on Monday. We would have to wait the weekend. UGH!!!

Day 8 Saturday and Day 9 Sunday
We stayed in mostly and Mom went out for food. I feel like we are hibernating! I am doing my best to get Jackson better and so he can have the MRI.

Day 10 Monday
Hilary did not hear back from G.A. at all. I began loosing hope. We decided to wait one more day to hear from them before we make our final bloodwork and EPI 743 delivery plans to come home.

Day 11 Tuesday
I finally heard from Hilary, Dr. Cohen's nurse today. Jackson will have an MRI on Friday with G.A. . I don't know the time yet. I am nervous about him having anesthsia. I am excited about seeing his brain after 5 yrs of Leigh's. I have lots of emotions now. Please pray that the G.A. goes great with Jackson and he gets over his cold. Jackson will get the EPI-743 on the folowing Monday and then we can come home!!!!,