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Thursday, January 13, 2011

"In Your Arms Again" by George Canyon & Crystal Shawanda with lyrics

This song, is beautiful, made me cry. Made me think of Harvey, OH how I miss him. :( I see everyone's husbands, boyfriends, and fiance's, family memebers and best friends all coming home, and it saddens my heart that I still have to wait until March. Although March is not that far, my heart feels is. Although this deployment has gone by quicker than I ever thought it would. I miss him. Kadyn misses him. I notice without Harvey, i quickly become frustrated when I can not do something. I also noticed that I am quick to get angry over really, dumb things. I have been working on that. Atleast I don't lose my cool in front of Kadyn. I always take it outside, or in another room. Many stressful frustrated tears, and sad tears have been shed, but it's all coming to and end soon. I can almost see that light at the end of the tunnel. Although it's slowly getting closer it's still hopeful and promising. I am thankful that Kadyn's health has been the best since he was born. God knows I'd probably go nutso if Kadyn's health wasn't as good. We have had are down here and there but not every month-week like it used to be. I never imagined I would ever go through this. Harvey and I have been together (of course with our ups and downs) for 8 years. We have a beautiful boy together and even during our downs, I coudn't imagine being with anyone else but him. I always said, I'd rather have 20 bad days with him, then 1 good day without him. I love him. He is my high school sweet heart. :) awww. Mushy. hehe.

Kadyn is doing fine. Still not out of the clear on his shunt. It seems that this shunt likes to get blocked but with a nice shunt tape with some flushing it seems to start working again. Monday I took Kadyn in because his whineing had been going on since Friday, he had a GrandMal seizure on Saturday (I got him out of it thankfully and kept him home, as it's rare that his seizures are shunt related, it's happened maybe one time) Sunday he was cranky/whiney and slept all day basically and then thru the night until 10am! Monday he ws in full fledge not eating and just crying mode! So I deciced better safe then sorry, Packed an overnight bag and packed Kadyn and took off. We get there and no one else was there. It was weird! But I'm thankful that no one else was sick! So we go to CT scan and Xray. Did that, come back, and of course his Ventricles looked the same. This Nurse though (Christine, bless her heart!) knows that his ventricles never ever change! (weird) So she asked, would you like to do a Shunt injection. She said with that we can kill two birds with one stone. GEt a pressure reading by doing a shunt tap and then making sure the dye contrast clears. I was all happy about that. Well, here is the...weird part. We do the shunt tap, pressure it almst 30!! Christine goes, well that could be why he is so upset. I then say, omg I feel so bad for not bringing him in then! I felt like a horrible mom at that point, although everyone said I did the right thing, they understood as a mom, something like that would make you feel horrible. So Christine said well lets do the injection still since we are here. SO she take some fluid off Kadyn's brain (oh I forgot to mention Kadn slept through this!) and then injecte the dye. It cleared! So she deicded well, lets check his pressure again and tap again. HE was still sleeping. His pressure was 8. WHAT! She deicded to rule it as there might of been a blood clot or something blocking the flow but when she injected the dye it pushed it through. OK that is fine with me!

Well Tuesday Kadyn ran a high fever. 101.9. Ugh. So I gave him Tylenol and Wednesday I reported it to the Neurosurgeon office. Kadyn was acting just fine so they said to keep him home and keep the fever dwn that his body might of caught something while at the hospital. Yesterday Kadyn still had a bit of a fever but no nearly as high. BY the end of the day he was fever free and this mama was happy.

Kadyn is still really whiney. He normally isn't like this. To be honest Kadyn hasn'tbeen the same since his last shunt revision/infection. He is more aggitates, rarely sleeps and I just can't seem to win when he gets overwhelming upset. I have no idea what maybe causeing this. He does not like to be held, doesn't really want to be played with unless it's on his terms, which is not very often. I try all these things and I seem to fail. He used to be able to wake up in the morning, watchin his morning cartoons and maybe fall back to sleep, now he just whines. Even if we go into another room, he is very whiney. I don't know why either. I tell Kadyn no whineing, because I often wonder if he knows when he whines i jump up and give him his bottle right away or I jump up and come to him right away. I wonder if he likes to see my go back and forth. There are some mornings, that I need to lay down for a minute because I have a headache. WHen I get up and get his bottle he drinks it until my head hits that pillow then he gets upset, when i give him the bottle back he is fine until my head hits the pillow again. SO I wonder if it's a game. I don't like it! haha. Whineing has always hurt my ears. It's like nails on a chalk board to me. I hope this is just a phase and he will quickly leave it. Especailly when Daddy gets home. I have been trying to break Kadyn of his "Screams" He will often just scream, yell or make a super loud noise in the middle of the night, and at the hospital with other patients and parents trying to sleep I don't want Kadyn to be waking them. Although teaching Kadyn No, has been going on for over a year now with now success.

Well, it's 3am and my child is still awake, because he only sleeps 2-3 hours at a time now. Ugh. So frustrating. I told Harvey when he gets home I am kicking him and Kadyn out and sleeping for a week hehe. :) I doubt that !!! :0)


Anonymous said...

Have you ever thought of giving him Melatonin. Alot of children take this in the evening to help them sleep. It is a natural remedy. I used to look after a child with Trisomy 13 which is rare but she had seizures all the time and because of the condition she had her parents wanted her to sleep. She could stay awake for days at a time. This helped her. It sounds like Kadyn is gettingyou wrapped around your finger. After a few times of him throwing the bottle I would not give it back for awhile and eventually he might learn that this behaviour is not getting him no where. You need a rest so your nerves can handle his behaviours. Here in Canada there are respite centres for special needs children and funding for respite so parents do not get burned out. You are not a bad parent for taking a break. Instead you could be a bad parent for not taking care of yourself so you can handle him. Hats off to you but take care of yourself.

Wendy said...

Glad to hear that you are trying the Melatonin. It may take awhile to see if it is helping but sounds like it was a pretty good hit for the first night. Glad to hear that you are taking time for you. Wish I lived closer and I could help out now and again. Sorry I could not post my name as I forgot my password. But I am Wendy the nurse who looks after medically fragile children for over 12 years and been nursing for 28 years. I look after 1 child with hydrocephalis who has had many operations and continues to have a shunt. Curious if you have his head elevated at night? All my kids with shunts that I look after have to have their heads elevated. Glad you hear you are getting out and taking MOMMY time. All mothers need this time just like parents need adult time together to stay connected. I have a 20 year old son with behaviour problems since he was small and lucky for me, my daughter 8 is a happy loving child that thinks of others. Continue doing your great job as a Mom.

Kathi said...

Hi, my name is Kathi. I saw a couple of your videos on Youtube and think Kadyn is SOOOOO adorable. About the whining/screaming, and I know this is gonna be very hard for you, but can/have you tried not reacting so quickly when he does this? I bet you anything it is a game, and he knows that you do jump every time he does this. Children are very smart and pick up on things very quickly.

Also wanted to let you know that my cousin's daughter also has Hydrocephalus. She got a shunt when she was 6/7 and is now 16 and driving!! I don't think she's had any revisions done, cuz when they first put the shunt in, they gave her a long enough tube (that goes into her abdomen), that as she grew, it didn't need to be replaced. I think all they need to worry about is it getting infected somehow - but nothing in the ten years since she got it.