Monday, November 28, 2011

sleepy and bulging vein

Jude is not sleeping again........and I am not sure why. He is fighting me going to sleep and doesn't stay asleep. I think I counted six times I got up last night or more.  I know this takes a toll on his little body. I can also normally handle this, but I think age is catching up to me. Today I felt just exhausted when it was time to get up for work. I have noticed my shoulders hurting, my sides hurting, my heart is fluttering, I get dizzy,etc........I am a bit worried. Nothing a doctor can do.......it's just the affects of not resting well for years. So I worry more about Jude's little body ...........and how not sleeping well affects his health. I am older and stronger, but what about him?
Over the weekend Allan and I noticed a bulging vein in Jude's neck. I am sure it's nothing to worry about, but I am wondering if any other SN moms have noticed this in their kids? I am trying to not think to much of it, but Jude does have issues with his veins when trying to put in an IV. So why would one in his neck be so predominant? Strange the things you worry about in Jude's situation. I had actually noticed it some time back, but chalked it up to an over reactive mom. It seems it's bulging a bit more and now that the nurse noticed I am a bit concerned. So I talked to Mike about it and we decided to have Jude seen by his doctor on Thursday for a check up.

So I do have a cute video to share.


video




5 comments:

Anonymous said...

Hi!
I have a son who is now almost 3 yrs old, he had a massive stroke at 11 mths old. He has severe CP and EP, and he doesn't sleep... We have had two horrible years of sleep deprivation and it's not good for anyone! Not your son and not yourself!
Have you tried melatonin? It is a natural hormone and regulates sleep patterns, it is very usual that people with CP lack this normal hormone. We also give our son sonethng called theralen, I don't know if that's what it's called in the US... It's drops that helps him fall asleep, you can get a bit dowsy the next day but otherwise it's great because he sleeps most nights now with this combination.
Good luck to you!
Marie

Cjengo said...

Thanks Marie. Jude was using 3mg of Melatonin, but we found it wasn't really helping. He currently takes 1mg of a sedative at night because he gets no REM sleep. This helps heal his brain. Although, he still has a lot of sleep distrubances.

marie said...

Ok, Max gets 10mg/day! Maybe Jude needs a higher dose? Our doctor said we should increase the dose until it worked:-) well ofcourse she had a roof of 10 mg and that seems to be what he needs right now. Our doctor said that Max should fall asleep within 15 min from when he gets the melatonin, otherwise it's not doing what it's supposed to... Maybe it's worth trying? Hope you get what you need and that it works out.

Marie

Cjengo said...

We did. It worked at first, but then we found it just clogged up the g button and really didn't work for him. We appreciate the feedback tho. The doctor basically told us that there is really nothing we can do. Jude will have to be repositioned for the rest of his life and we are going to have to deal with it. Which makes sense. He cannot lie in one place all night or he takes the risk of a blood clot. So his waking up is just his body's way of telling us he is not comfortable. He cannot move on his own so he needs us to do it.

marie said...

Yes, I guess that's just one more part of being a parent to a SN kid, huh?! To know that we likely will never get the sleep we so badly need, no one can understand if they are not in our position. I atleast hope you get help so you don't have to do it all by yourself the whole time.
You are in my thoughts, and know that you are a wonderful mum!

Marie