Monday, August 22, 2005

Jacob had a really bad day today & we are emotionally drained. At 8:30am I called the hospital from work to see how he did throughout the night. I was scared to hear that he wasn't doing well. Since 6am he had 6 instances of bradicardia/apnea spells. Basically he would have a seizure that would cause his heart rate to drop & his chest cavity to tighten, causing him to stop breathing.

By the time Kevin & I got there by 9:30am, he had had several more. By Noon he was up to 15 or more of these events. It was very scary & we were uncertain what decisions we may have to make. Dr A. Johnson ordered that he be given a dose of Atavin, which is in the same family of drugs as Klonopin, however it's given via IV & is fast acting, but not long lasting like the Klonopin is.

The Atavin, thankfully stopped the seizure activity. It is now believed that Jacob's condition was progressing so rapidly that the Keppra was actually doing some good, just wasn't good enough. As the medication wore off, his seizures intensified & put him into constant seizure activity throughout last night. Dr A. Johnson put it this way: "his seizures were happening more often then he was able to rest". Once Dr A. Johnson was able to review last nights study, he came back & asked that we start a new medication called Depakote. This also looks like it's helping Jacob.

Dr A. Johnson thinks this might be Severe Myoclonic Epilepsy in Infancy (SMEI), also known as Dravet Syndrome. He hadn't mentioned it before because originally his seizures were so easy to control; now that they have progressed so much more, he's beginning to think it might be. At first, he said it couldn't be detected genetically, however, he then remembered that there is one gene where they can look for it.

When Kevin & I left at 7:00 tonight, he had had 3 doses of Atavin & one dose of Depakote. Although he is still showing signs of some seizures here & there, he is much more stable & thankfully, Kevin & I didn't have any life or death decisions to make today. Dr A. Johnson did reiterate today that he still doesn't feel as though they have done all they can do & just wants us to take it one day at a time.

We have received test results back from Wisconsin where they were testing for the Hyperexplexia Syndrome; this has come back 'inconclusive'. (figures) We have also received preliminary results from the Atlanta lab that is performing the spinal tap tests, these have also come back "although elevated in some areas, they are inconclusive".

As the doctor started to tell us the results, I jokingly finished his sentence for him. He laughed & I told him that I could be a doctor by now! Who needs nursing school or a doctorate? Just spend time in the NICU like I have & it's the best OJT you can get! Scary but true.

Kevin also made a funny tonight just before we left. He said, "somebody needs to invent wireless EEG's, where the electrodes use infrared technology". that how we are going to make our millions? Get on it Kev!! *wink

Jacob goes in for surgery tomorrow morning between 10am-11am (PST), as long as he continues to be stable. Please keep say a special prayer for us during that time.

Overall Status: Critically Stable
Visitors: Grandma Cray, Grandma & Grandpa, Kerry & Jessika
Dinner Provided By: The Cray's

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