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Wednesday, June 2, 2010

Sleepy days and nights

Kadyn slept all night the night before and all day, only waking up every so often to eat, or talk a little, other than that he has slept all but maybe 3 hours today. I am hoping it's just the weather as this past time he woke up he was in a good mood. I am going to wait this out through tonight into the morning and see how he is doing tomorrow. The pressure in Kadyn's head is affected by the pressure in the atmosphere. Many people affected by Hydrocephalus are. Not all though. Some people are so bad that they actually show signs of shunt malfunction. Kadyn is one of those people. He sleeps, cranky, hits his head says ouch, cries a lot and is just plain miserable until the weather breaks. He starts getting bad the day before it storms or rains. He is also sensitive to heat. The heat can cause Kadyn to have fevers, so we are very careful not to get him over heated. Also with Kadyn's heart condition his core body temp stays a little higher then normal. Like a healthy person is normally 98.6 well Kadyn's is usually 99.4. Hopefully when his hole closes he will be able to retain a lower body temp. It's very tough when to decide a 100.0 temp is a fever or just him. So I normally don't worry until it's 102 or higher of course. Which he reacts to cold and flus and any other virus differently then healthy people. Kadyn will get a high fever the day before then start showing his symptoms the next day. The last few colds have just been an over night thing, so I am thinking his body is fighting off these virus better. Which I am thankful for. Also the past few fevers have been seizure free. Normally Kadyn spikes any fever and he is right in to a Grand Mal seizure. Grand Mal seizures are no fun. Not only can I NOT get Kadyn out of them but his lips turn blue, and it takes so much sedation medication that he needs oxygen for a day just to give him a chance to heal, two times he had to be intubated.

I have noticed though that since Kadyn has gotten this last shunt placement he seems to just have a lot more things going wrong with him. I feel terrible because we are just in adn out of the hospital so much. I just wish I could figure out why he has been sick so much. Everything has been pointing to his shunt but every test they do doesn't match. So we are left at a dead end. It's frustrating not being able to do anything to help him. I don't want to freak out and just have then do surgery but I wish there was more they could do for him. I often wonder if maybe one of his shunts are clogged and they can't tell because Kadyn doesn't ever show any sign of discomfort when his shunt is not working. Kadyn has two catheters in his head and if one is clogged I think they other one works still, which will make them think his shunt is working. I don't know. I am lost!!

I am hoping he is feeling better in the morning though. I am going to try and get some sleep now! <3


Luciana said...

Hi!! My name is Luciana..I´m from Argentina.. I saw the story of your baby boy.... god bless you... you´re a Strong mum and you have and a Handsome Boy!..