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Sunday, June 3, 2012

It's been awhile, so lets update

Kadyn was doing so well, but right now we are having a minor set back. Let's do a back story why don't we.

Kadyn had been trying to sit up for the longest time, but March came and he started having seizures again. I fought and fought to get to the bottom of this. Neurology said he needs medication, I say, he does not need medication at all. Medication made him have seizures! So April Kadyn had a bad seizure, one so bad we ended up staying in the hospital a couple days because he had to be medicated so much to even get him out of it. May, we had a trip to Denver planed, my mom watched Kadyn and he ended up having a seizure then. So his seizures are back full force. He has stopped sitting up, started hitting himself in the head again. Something is going on. So a trip to Neurosurgery and his Neurosurgeon said that since Kadyn has two catheters there is no for sure way of knowing that the other catheter is working unless we go in there surgically and check it out. That was last Wednesday (May 30th). Friday Kadyn had the exploratory surgery to find out that his shunt IS in fact working, but his ICP is lower than what his NSG would like. So, the decision was to do some ICP monitoring for a couple days. Well within these few days, Kadyn has developed a severe ear infection, which almost required him to go back to the OR to replace his tubes that have fallen out, but ENT decided that we would try antibiotics first and then go from there. Since his ears look better today, OR was canceled with the hopes his ears will no longer need the tubes. Which is awesome news!!

On a NSG stand point. Kadyn is going to need a shunt revision. ICP has brought to our attention that when Kadyn is in his wheel chair that his pressures go to -4 and will stay between 0 and -4. Which since Kadyn can not tolerate that low of a pressure he will need a new shunt. Most likely try out a programmable shunt again. Kadyn had that as a newborn but it never worked out for him. The hopes is to have Kadyn sitting up more, it's healthier for him and...better for us when we want to go shopping. I always wondered why Kadyn just never wanted to sit in his chair, or in our laps. Now I know, it's very uncomfortable for him. Laying down his pressures are between 11 and 15, although high, he is comfortable with it. Sleeping his pressures stay around 8, which again is borderline, but it is all on how they handle the pressure. Kadyn seems to handle it well.

Now some pictures of Kadyn's hospital stay and new wheel chair!