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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.

Wednesday, June 15, 2011


So, the million dollar question, Why is Jackson dropping his sats ( O2) at night. After all the tests, doctors think Jackson's seizures where causing him to stop breathing, dropping his sats while sleeping. He never had any of these events in the hospital. His EEG revealed Jackson having an increase in his seizures so that theory makes sense. Pulmonary's theory of reflux was never fully proven. Jackson did reflux during his test but it wasn't anymore than you or I would during the day. The elusive sleep study wasn't reallyany help in determining what would cause him to drop his sats in the night. It did show Jackson does not sleep like the rest of us. His seizures don't let his brain rest. They said they saw constant seizure activity during the sleep study. Dr. Kleinman the resident that has been taking care of Jackson the last 3 visits in the hospital said Jackson had grossly abnormal sleep pattern. So rest is very important for Jack. I am going to send all these test results to our docs in TX for a second opinion. Neuro in Memphis recommended increasing the Zonnegran levels to see if we can control the seizures better. I plan on researching the results myself. Please continue to pray for Jackson and other mito kids. We need a cure.

Monday, June 13, 2011

Hospital again..

I took Jackson to Dr. Frizzell on Friday. The night before he had dropped his O2 levels several times in the night. He is also having alot of trouble getting over thie respitory virus. Dr. Frizzell had left for the day and we saw Dr.Livingston. He had spoken withDr. Frizzell about Jackson and I think they had predetermined to admit Jackson. Jackson has not dropped his sats while being here. We have been getting vest therapy, albuterol and his Qvar. They have been monitoring his temp and it has been anywhere from normal to 100.6. Jackson has been getting Tylenol for the fevers. There are two theories as to why Jackson is dropping his O2 levels at night and not the day. Neuro theory is that Jackson is having seizure activity that is inhibiting his breathing. Today, Jackson had an eeg and a Upper GI study. The eeg revealed that Jackson had 5 myoclonic seizures and some epileptic events. To help control these events better they are increasing his Zonegran. The Sleep study results were inconclusive as to whether there is apnea. He only dropped his sats to 92 during the study. That's all they told me today. It just didn't gie us the answers I wanted. I think I will ask for a copy and pick it apart at home later. The second theory, is from Pulmonolgy is that Jackson is aspirating his stomach contents while sleeping. He is gettins so relaxed during sleep that he is loosing what muscle tone he does have while awake and the stomach contents are reflux. During his upper Gi study he did reflux. So now I am waiting to hear the plan from Pulmo. Jackson has a salvia gram ordered for tomorrow. They ordered this test to see how Jackson is managing his saliva. I will post the results and the plan from pulmo tomorrow. I am glad that we've gotten some answers today. I am also glad that there was eeg results that showed seizures. I have been worried that the O2 dropping was a progression in the disease. We will see if the increase in meds helps. We really won't know if it is working until the meds get in his system for a while, at least a few weeks. That's all I know for now....Thanks for checking in on Jack.