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All the doctors were very impressed with Jetty on Wednesday when he showed them that he could breathe just fine without the help of the ventilator. I don't think anyone expected him to come around that fast! With Jetty breathing well on his own and the ammonia blood levels coming down to almost normal they decided on Thursday he no longer needed to be in ICU and was moved to a regular floor. This made Mommy and Daddy very happy and even happier yesterday when they said he could go home. However....the fact that two of Jetty's seizures medicines have been taken away and the ketogenic diet being temporarily on hold, has caused his seizures to be worse and pretty much constant. For the next few days Jetty is to be given Ativan (the medicine that makes him sleep) around the clock to keep his seizures under control while the ketogenic diet is restarted and has time to take effect. So for now, Jetty will sleep and catch up on some much needed rest and hope that when we stop the ativan the diet will work again.

Jetty had a bad day yesterday. He started having trouble breathing around lunch time. His face turned white and his lips turned blue. We rushed him to the ER where his heart rate was 20. The ER team at Chester River stablized Jetty and did a wonderful job. They got his heart rate back up and sedated him. The only thing I didn't like was when they drilled a needle into his shin bone which was tough to stomach. Jamie said it wasn't a big deal so I guess I'm ok with it now. I am not sure but i think it was a DeWalt compact drill. According to Jamie, that procedure is called a intraosseous and basically it is a way to get a quick IV hookup. They then called Hopkins and Hopkins sent their medivac transport team for him. We flew over and he is now in the Pediatric ICU. He is currently heavily sedated and on a ventilator. Why did he stop breathing??? They have ruled out aspiration and feel that the cause is either one of two reasons. First reason may be that his seizures have evolved to where they now effect his ability to breathe on his own. Hopefully this is not the reason! Possibility # 2- His ammonia level in his blood was super high. This can have multiple effects on the human body. The elevated ammonia level and LFT's are a result of his liver not being able to handle the high toxicity of his seizure meds.

They now have taken him off of all of his seizure meds except for phenobarbital. They are flushing his system to remove the ammonia. We are waiting to hear about the catscan results as well as results from many other tests that were done over night.

Hopefully when it is time to go, they will take us back by helicopter too! Jetty was asleep for the ride over.

Some pictures we have taken with our cell phones over the past month