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Thursday, April 16, 2009

Ohhh boy

Kadyn isn't doing too good. He is just not there it seems like. I don't know. He stayed the night with my mom and when I came to get him he just looked like he didn't feel good. His eyes were all glazed and he just looked horrible. So I bring him home and he perked up a little bit and not he is sleeping. I am going to wake him in 20 minutes so he doesn't stay awake all night. I am really worried about it. I don't think it's his shunt (I hope) because he normally will have a seizure if anything is wrong with his shunt. I am just worried he is getting sick and I don't want my little man to get sick. This darn weather where one day it is hot and the next it is snowing just isn't help with him and his condtion. The darn pressure changes have to be hurting his little head. I just can't win though :-(. I feel that everytime I do something to make it easier for him, it just backfires. Like his port. I did that so he wouldn't have to get so many pokes, and so that it would be easier to get blood from him and everything, well the darn thing isn't working so now he has to go through another surgery. I am debating if I should just have them take it and keep it out or try it one more time. I am leaning towards trying it one more time because I just don't want to put him through all them pokes.

I just am frustrated I guess. UGH!

Kadyn is not progressing in building strength to hold his head up. NO matter what I do, he just isn't do it. I feel since he has been in the hospital so much he has been set back just soo far that I have a lot of catching up to do. Also Kadyn doesn't have therapy anymore because he couldn't show up for 3 weeks for being in the hospital. I am wanting to know why is it that they kick out the child who they told me is thier most handicapped child they have? Why wouldn't they help out and make a house call or go to the hospital and help him out. I guess it's rediculous. I don't know. I just am frustrated with that too. Sometimes I look at her and I ask her why am I driving here to do all the things I can do at home. I don't know. They weren't really working with him, they would stick him in a chair and call it a day and walk him around. He wasn't progressing at all in his feeding and all she did was feed him some baby food and he never ate it. We never progressed in anything. I just feel so frustrated!!!


OK I feel better


Jay Family said...

Re: You are not alone....


Our son Jack was diagnosed with Hydrocephalus at 5 months old and he is to be 6yo in June. We understand totally your frustration, worry and everything you feel emotionally as life with a child having this condition is a roller coaster ride. My wife still keeps a suitcase packed ready in case Jack needs to visit the hospital. Our longest stay inpatient was 3.5 months after 8 Neuro: operations and numerous complications along the way fitting VP programmable shunts. Feel free to email us if you like any time to keep in touch. Bye for now.
Jack's parents.. Jay & Samroeng (UK)

Kristen said...

So much frustration, I can see why you would feel that way. There is always so much to think about it, worry about, and schedule. I am praying for you!

Dinesh said...


Isnt is amazing that these children who have to undergo SO much pain, fear and suffering are the Happiest children.

My daughter is 14 now, has Hydrocephalus. Longest stay in hospital 2 months. After this trauma(2 month ) stay in hospital, she vomitted at the very sight of the hospital ! BUT she is THE happiest and most loving child in our family. She really spreads sunshine where ever she goes. Even her school teaches shed tears for her efforts.

God Bless these, and all, children.