Wednesday, April 24, 2013
Most people reading this blog are friends and family of ours, so you already know at least part of Owen's story. I'm not going to tell his whole birth story in this post (maybe another post later), but I'll give some quick highlights to get us up to the present. Owen was born clinically dead. He was revived and spent 3 weeks at Children's Hospital in Seattle before we brought him home. Owen had several seizures in the NICU and when we first brought him he was on Phenobarbital. He also had a feeding tube, which quickly became the center of our lives. When we first came home from the hospital I was spending nearly eight hours a day feeding Owen between pumping breast milk, dealing with the feeding pump, re-inserting the NG tube, and dealing with the reflux. By six months of age, Owen was showing no more seizure activity and the Phenobarbital was discontinued. This just left us with the feeding issues. At 11 months old, Owen was cleared to start limited(very limited) trials of pureed foods. Over the next year we gradually increased his oral intake and reduced his tube feeds. By October 2011( 2yrs 3 months old), Owen had gone 2 weeks without a tube feed. Then on October 27th Owen got sick. At first we thought it would be a good test of whether or not we were ready to get rid of the tube for good. If he could make it through an illness with out needing fluids through his tube it would be a good sign that he was ready to have the tube removed. Owen's fever quickly shot up from 99.8- 103.8 in less than an hour. I gave him some Tylenol and the fever started dropping. Owen fell asleep, so I put him to bed, figuring sleep was the best thing for him. When I came in about 15-20 min. later to check on him he was having a seizure.
The seizure lasted 2hours and 40 min from when I noticed it. It could have been closer to 3 hours since he'd been alone for 15 -20 min before that. We took 2 ambulances to our local hospital. Owen was given at least 11 doses of at least 5 different medications (I eventually lost count) to finally get the seizure under control. He was intubated and sent by ambulance to the airport where we took an air flight to yet another ambulance, finally ending up in ICU at Seattle Children's. We stayed there 5 days and finally came home on Keppra, another anti seizure drug. A few months later Owen pulled his feeding tube out and we made the decision not to have it put back in(the hole had started to close up). Owen has been maintaining his weight orally, but has a very limited palate. Eating is still a constant struggle, but it is worth it not to have the constant tube infections.
Over the next year and a half, we tried several different medications trying to get seizure control without horrible side effects. Owen's seizures can last 20-30 minutes long even with the administration of rescue meds. We hadn't been able to go more than 6 weeks without a seizure. In November 2012, we switched to Swedish Hospital. They changed more meds, and upped others and we have now gone almost 3 months without calling an ambulance. During this process we discoved that in addition to the big seizures Owen has small ones all throughout the day and nearly constantly at night. The drugs have not been successful at stopping those. The drugs also suppress his immune system, so that we deal with illness constantly. The above picture shows Owen's bedtime meds (The syringe is antibiotics he took 2x a day for 10 days). He only takes 6 pills in the mornings. The doctor doesn't feel that we can up Owen's medication further without taking him to toxic levels. We have determined that Owen is not a candidate for brain surgery since his seizures occur all over his brain. Our next step is the Ketogenic diet. I actually heard about this diet a while ago, but we haven't been sure if we could get him to eat it due to the eating issues.
To be continued...