I am loosing my mind!!!!!!!!

*UPDATE RE. POST BELOW*

No person this sleep deprived should have to jump hoops like I have to get a stinking med!
I have talked to Pam at least 5 times, the pharmacy 3 times, and my insurance company. Bottom line, there was a 48 hour authorization because this med is not given to children under 7.
Thanks to Pam and Dr. S and my many phone calls it is done...almost...I have to pick it up tonight!

We are going to try Risperidone. Anyone out there use this for sleep? Were starting off at a very low dose, because it can cause vomiting (NOOOOO!)and as I was told, " it is not a simple drug" so....1/4ml for 4 days, then 1/2 ml...goodness I hope this works!










I am looking for Hudson, has anyone seen him?????

What happened to my Hudson? The little boy who sleeps at night, rarely keeping his mom awake? I am going insane with this new Hudson....this Hudson that is in a pattern for a month now of staying awake ALL night and sleeping ALL day....

Last night was one of those nights. He slept the night before, so he woke yesterday at 12 noon. He was up all day and I was hopeful he would sleep another solid night. By 9:30 I fed and gave him his meds....at 11 he was still awake, but quiet in my bed. I was exhausted so I put him I his crib. Put his cpap on and was hoping he'd sleep. An hour later I heard screaming. Not a cry scream, just an anwry, trying to be vocal scream. I took his mask off and figured I'd let him fall asleep without it, then put it on later if I was awake. Needless to say he was awake "screaming" until 5 a.m.!!! It is like he is in this weird zone and it takes sunrise before he snaps out of it! Ugh! Unfortunately this has been a pattern for a while now. When the kids were still on break, it was somewhat bare able because I could stay in bed, but now that they are back in school....I am dying. I am sure my fuse is short...I am sure this is not good for me, a month of this crazy sleep pattern. During the day, he is comatized....seriously....I take him out and he sleeps through it all! Saturday we went to a blackberry festival...loud music, hundreds of people, hot day....slept through it all! I think onlookers thought we were abusing him...the kids were slapping his cheeks, I am scratching the bottom of his feet...we even tried cold water...nothing!!!

He seems to do about 2 days in a row of no sleep at night/sleep all day, then 1 night sleep through the night (or he is up and at that point I have died in my sleep and no longer hear him!! Ok a little dramatic, but that's how it feels!)

It is so hard single parenting Hudson at times...for 4 years I have taken it ALL on. I gladly take it all on...I don't know it any other way, but I imagine sharing it with a spouse who also gladly endures and shares these times would be a huge help,and keep the sanity in check.
I have no one to do " shifts" ....there is no one to share the responsibility or the craziness having a sick child brings. It is all on my shoulders, and although I adore him, it is exhausting, stressful, and sometimes feels like too much for one person to bare. I find myself reminding myself of those who have lost their child to this disease, they probably wish they would hear the sound of their little ones voice keeping them up all night...so I then feel ashamed and grateful all at once. I try to keep thing in perspective, sometimes it is hard to do on little sleep. I have to keep up with the demands of not only Hudson, but my other 2... Now school and homework (yes, they already have homework!)
Sometimes the best medicine for me is a good cry...at 3 a.m. this morning, as I lye in bed, after getting up for the umpteenth time, I just shed some tears, praying out loud in frustration and exhaustion.

I guess to those who read my blog and also have a sick child, I want you to walk away with this....if you have a spouse that shares the burden as well as the joys of parenting a s.n. child, be thankful. A tiny part of me envies you, but I am mostly grateful you don't have to take it all on by yourself. Loosing your mind all by yourself....not fun!! Trust me.

So....as I type, Mr. H man is snoozing away. First thing after dropping kids to school was a call to mito nurse. She returned my call right away laughing...In my message I told her I was ready for some "heavy duty medication" forget the melatonin, we need the " big guns" now!
She knows how anti-med I am...I am always looking to wean Hudson off of one of his bazillion drugs he is on, and now here I am begging for something to knock him out!!!

I am waiting for her call...she is talking to Dr. S. about which "gun" we will use.