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Friday, May 21, 2010

Hospital still

Kadyn is still admitted. He still isn't really eating and is starting to become very irritable. Tuesday Kadyn had a total of 20 seizures and yesterday he had 1. 1 while sitting up. He also gets very uncomfortable while sitting up. Today the Neurosurgeon said that they are not going to rule out shunt malfunction but as long as his stats are okay they don't want to think that it is. They are working closely with Neurology and come in Kadyn's room every couple hours to check on him. They are unsure as what to do. They said that they may do a dye injection today to see if his shunt is flowing and to 100% rule out it being his shunt. Neurology is trying to figure out what else to do because he is already on 5 medications plus the ketogetic formula.


It's very hard to explain to the doctors that Kadyn is putting his bottle in his mouth but he isn't drinking any, he uses it for comfort. He drank maybe 8 ounces yesterday and today he drank 4. The rest spills out the side of his mouth or all over his face or even the floor. I told them I am not leaving until Kadyn is eating, they said, You can't leave until we get this figured out anyways. Kadyn has never had that many seizures in one day ever. So Children's Hospital of Michigan is our home for now. How long will we be there? I can't say. If Kadyn wakes up from this nap wanting to eat, I'd love to go home today, but that won't happen. My head hurts along with my heart. Usually I have all the answers and right now I have none.

6 comments:

Sara Ware said...

Hang in there, Sara...
I pray for you and your family every day, and check in every day or so to see how things are. I'm a nurse in Los Angeles, and I am sure you are in good hands there, where hopefully things will resolve very soon and Kadyn will be back to his happy self!
All good things,
Sara

Kristen said...

My heart goes out to you. Praying for answers.

Colette said...

I feel for what you and Kaydn are going through right now, but maybe staying there until they have found the answers is the best place to be for the moment ... its hard being away from home and family I know but until they can give a diagnosis hang in there, God is good, keep strong, easier said than done I know! You both are in my prayers.

KajnBlonde said...

Sara,

I am saying prayers for Kadyn and hoping he is doing better. I can imagine how hard it is to see your child have so many seizures and not being able to stop them or know what is causing them. Please know you are not alone...many people are there with you in spirit....

Take care of yourself too...

Mary

Anonymous said...

I hope you have told the doctors that Kadyn was not taking his seizure medications a couple weeks back and you were thinking of stopping them since he was not having seizures. I am a nurse who looks after medically fragile children like Kadyn. All the children I look after have trachs and tube feeds and most have seizures every day.

marta said...

Te mando todo mi amor desde EspaƱa, Kadyn es un bebe maravilloso