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Friday, June 24, 2011

Exciting news!

Jackson is still fighting this respitory virus. He has been runnign temps from 99.3-100.1. I took him to Dr. Frizzell on Monday. He put Jack on Septra. During our visit he read all of Jackson's reports and exmined Jackson very carefully. It was not a rushed visit. He thought very carefully before he made the decison because Jackson has been on so much antibiotics lately. I think we probably should have left the hospital on anitbiotics. I asked doctors before we left and they felt at the time the iv antibitics would cover Jackson. I think they expected Jackson to recover quicker than he has. Jackson is coughing less and has less secretions but this unusual high temp is still hanging on . I think he is feeling better because I am seeing more smiles and excited vocalizations.

I took Jackson to Dr. Stokes's office today for a follow up about the sleep study. When we got there the receptionist told me the apt had been rescheduled for July 1. I don't know how this change occured. I was not notified. I was put out. Dr. Stokes had left for another clinic and was not available. So I did the only thing I could do...we turned around and left. I was upset,  but what would throwing a fit do. It certainly wouldn't help the situation so I left calmly. This  Memphis disorganization just reminded me of why I sought help for Jackson in Houston. They seem  have it together down there. I faxed all the reports of results of all the tests done in the hospital to Dr.Koenig (neuo)  and Dr. Smith (pulmo) on Monday. Guess who called me personally on Tuesday morning? Dr. Smith called and spoke with me about the results of the sleep study and the droping of O2 levels that Jackson has been doing. She had already spoken with Dr, Koenig about Jackson. Can you believe that? Two of Jackson's specialists actually communicating with each other for the benefit of Jackson!!!WOW!! I was blown away. After I caught her up on the past 8 weeks of all things Jackson, she said that after hearing me describe the episodes she and Dr. K felt confident that these low O2 episodes were neurological in nature. They are evidence of what is going on in Jackson's brain bcause of  Leigh's. They had two theories. First, Jackson has been sick with this respitory virus and his siezure threshold is much lower during illness. Second theory, Jackson has experienced some disease progression. I think it may be a little of both. I don't want to think he's had disease progression but I can't ignore the obvious either. We are to follow up with both Dr. Smith and Dr. Koenig on our next trip to Houston. I haven't planned it yet but I need to do it soon. I felt more confident after speking with her about our course of treatment for Jackson. A second opinion never hurt anyone. I rely on their experience with  Leigh's to help guide us through this illness. I know there is nothing we can do to make the disease go away. Alot of what Memphis doctors have done for Jackson is the same as the Texas doctors would do. There is however, alot things Memphis docs could do to hurt (Mito) Jackson.  I want to make sure that everything that can be done for Jackson is done. I just couldn't live with myself if I didn't.

So our exciting news....Jackson has been nominated for Make-A-Wish. We were nominated by a dear friend. We are super excited and honored by this nomination. We have to have a wish ready by next Thursday when they come to our house to visit Jackson. I am not sure what Jackson will wish for. If anyone has any suggestions please feel free to email me. We have thought about a trip to Disney and building Jackson's own room. I don't know what to expect from this experience but we are all excited.

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