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Monday, May 24, 2010

Home...not so much?

So I opted to go home yesterday as they weren't going to do anything. I am thinking going home was a bad idea. Kadyn is still not eating very well and he is very lethargic today. He woke up at 9am, went back to sleep about 1 and slept until 7, woke up for about an hour and slept until 11 then just went back to sleep now at 1am. I am at a lost as what to think. I took him for a walk today to get him some fresh air, and maybe that was too much for him today. I don't know. Kadyn is just comfusing me. I don't know what to think. I am going to give it a couple days, maybe he needs to recover more. I don't really know. Things are very confusing right now. Also whats even more scary is all of his lil friends who have the same condition, thier shunts are failing.

Kadyn is very hard to tell. His ventricles never change, shunt tap barly works and the dye test is usually inconclusive, and even when his shunt isn't working he is a very happy baby. I proved this to them when Dr. Ham turned his one EVD off. (Kadyn has two cathetors) to try and see if they could simplify his shunt system. Well, they thought since his ventricles didn't get any bigger and since he was very happy and smiling and playing that this would be easy and they could just put one cathetor in his head. Not so much, Dr.Ham went in and said his pressure was very high. So he had to put his second cathetor in. So, you can never tell with Kadyn. Things are very difficult with him. I love how he can stay so happy, but I stinks because even though he is happy you know he is suffering at the same time. :(

Well, I just wanted to update and let everyone know that we are home...for now. I am not sure what's going to happen next. We will just have to see how Kadyn feels tomorrow morning.


Colette said...

Praying for you and Kaydn and that these issues at the moment are soon resolved! It is hard when nothing specific can be identified as to what is causing this problem, but know that you both are never far from our thoughts and always in our prayers! Take care and stay strong! :)

Anonymous said...

when a child has a seizure its like running a marathon and considering he had so many it would be like travelling in the outback for days. so after they stopped he'll take up to nearly 2 weeks to be back to normal as hes sooo exhausted and lacking in energy!
praying for you guys :)

Michelle said...

Ug. Glad you are home, such that it is. I agree with the last comment - Owen is really sleepy for quite a while after his siezures and if he has a big one we expect two weeks before he returns to normal and Kadyn was having 20 in a day! I have also just learned something new this week that I wonder about with Kadyn...have they done an MRI of his spine? We are getting our first one with Owen soon. I didn't know this, but the pressure can push the cerebellum down. You've heard of the Chiari malformation I'm sure, but it can even happen later on as a secondary thing even if it wasn't the original cause (which is what I just learned). Anyway it can cause problems with their breathing while they sleep and one of the biggest signs is sleepiness during the day. Just another thought - it could just be the seizures, or the seizure meds if he's still on any with his diet.

Sending good thoughts your way.