Follow by Email

Friday, June 11, 2010

Not sure what to think anymore

Kadyn goes from happy to angry in an instant and there could be nothing to set it off. My new kitty had stopped bothering him, and she is gental with him now. Also I am not overly playing with him, which he doesn't and has never liked, also I don't hold him because that he doesn't like either. I have talked to him and tried to figure out exatly what to do to make his cryings stop. He just has to cry out whatever is bugging him and then he is fine. Mostly he isn't sleeping as well as he used to. He will wake up a few times in the middle of the night, not crying but just restless and talks a little then goes back to sleep. I think he isn't getting good sleep which makes him tired in the morning and he is cranky because he wants to be awake but is so tired. It is either that or I need to see the Neurosurgeon. He has a valve on his shunt that is suppose to become fluid filled when he cries or does anything to make his pressures go up and latly this piece has not been filling with fluid at all. So I am wondering if maybe, just maybe his one shunt has stopped working.
Kadyn has 2 shunt in his head, not 2 cathetors anymore. His neurosurgeon told me that he put two shunts in because it was easier for him and safer for Kadyn. So he exlained to me about the one valve because I got nervous once because I saw the fluid filled sack on his head and after what I went through...3 surgeries within 2 weeks I freaked and drove to the hospital quickly. Thankfully they told me it was normal and will continue to do that. So i took him home and ever since this shunt has been placed he has not been himself. He gets angry over everything, he cries a lot, and he cries in pain, I give him Tylenol and it doesn't cut it, he also isn't eating as well although he is still gaining weight. He doesn't like most things that he used to and he just isn't the same little guy. Which makes me wonder if he had gotten some brain damage with his last revisons. This I am unsure of. I do believe he needs an MRI which I am going to request from the Neurosurgeon next time or even the Neurologiest too. I am trying to hope this goes away on its own. If anyone remebers this time last year Kadyn was also in the hosptial for infection and the year before. Although he doesn'y have infection as he has been tested for it a few times already from having crazy fevers. I just wonder if his one shunt has stopped working because when they took his on EVD and shut it off he acted fine and when Dr. Ham went in he saw his pressure was too high. This makes me wonder how Kadyn handles the pressure on his head so well. Maybe it's because he had it for so long before he was born...I have no idea. I know ever child/person is different. Kadyn's ventricle size never changes in CT, his valve always pushes down and refills and he always acts happy when his shunt isn't working. I just don't know. Neurosurgary doesn't want to go in right away as Kadyn has always gotten infection after his surgery. I have no idea how or why because I don't take him out and I sanatize everything when we get home, but the Dr's reassure me that it's nothing I am doing wrong, but Kadyn's body might be so slow with bouncing back from sugery that maybe his body can't fight anything off. I don't know. I am confused. So I think when I take him in Monday to get blood drawn I am going to go and stop off at the Neurosurgeons office and see them and check and make sure everything is okay with Kadyn. I am going to explain how he just isn't the same since his last shunt surgery and how maybe one of his shunts have stopped working. I would call but at this hospital it's easier and better to just go because they want to see the patient and see how they are acting too and plus see how they look, like head size, pupil reaction ect.
I am just at a lost. Kadyn's case is so hard to diagnoise when he gives no real symptoms. I just hope one day I can catch a break. Although on a lighter note, Kadyn has not had a seizure this month! Normally he has one big one by now and he has had none!! YAY! How exciting!!!


Mary said...

Hi I can't believe I read your all your post about Kadyn. Yes I stayed up to wee in the morning but I just couldn't start from the beginning and then up to the current blog.
I'm sure you hear this often but You are doing a great job with Kadyn. He's smile says it all. I never knew that hydrocephalus could cause so much grief. My Nephew was almost two month before the doctor found it. When I held him I though is cry sounded different then before and he's head seemed bigger then most babies. I kept asking my sister in law what the doctor said but she hadn't taken him in. my sister in law has noonan syndrome and my nephew also has it. He went threw most of the delays that kadyn has/experienced but I think that Kadyn having seizures make it harder for him. My nephew crawled like Kadyn and had eating problems to. He is 11yrs old now is doing great, he is in a regular class room and and is 100% pre-teen boy. He is much smaller then he's class mates but that is all. I just I never realized how lucky we have been with he's shunt, never have had to replace it yet.
Thank you for sharing Kadyn with us day to day threw your blogs. It has helped me see that my nephew is lucky when other people can't see what life could be. I look foward to seeing Kadyn grow even stronger as a boy and show the world what an amazing boy he is.. You three will always be in my prayers. God is amazing. He is able to use Kadyn more then any of us can know!!

Heather said...

I just watched the video of Kadyn when he was first born. I was so moved and touched by his strength and beauty. I love the pictures of him smiling. Thank you for sharing him with us. Our families thoughts and prayers are with you and your family. I am so glad to hear that Kadyn continues to be a miracle in the making.