Sunday, December 19, 2010

Skyler is still not sleeping.  He is awake all night long and all day long.  Its so strange, we just dont know whats going on with him right now.  They tried a new sleeping pill last night and it didnt do anything but make him an emotional wreck.  He didnt get sleepy but he did get really mad and sad and frustrated.  It was a hard night to say the least.   I had the nurse read me the side effects of the drug because he was having some sort of reaction to it, and guess what was on the list....insomnia.  Are you kidding me?!  Haha what a fabulous sleeping pill.  Lets just say he will never get that medicine again.
This past week and a half Skylers new best friend has been his pink barf bucket.  He has just been so sick and constantly throwing up. He is also still spiking fevers as high as 105 degrees F at least twice a day.  So he is just pretty much miserable all the time.  He does put up a good front of being ok though even though I know he isnt feeling good.  He has learned that if he says he doesnt feel good then most likely the nurse will come in with medicine and even sometimes a poke.  Poor kiddo.  He is still talking and being pretty darn cute though.  He keeps making everybody laugh with his little comments and please and thank yous.

He got another platelet and blood transfusion today.  The matched platelets have helped in bringing his counts up higher right after he gets transfused though, so he has been getting them every other day now instead of everyday which is an improvement.  One day his counts jumped up to over 200!  Holy cow thats super high for him.  It was funny because all the doctors and nurses couldnt believe that that was actually HIS platelet count.  Of course the next day it dropped down to 20, but still thats great that it went up that high.


lindsay Roscoe said...

Crystal he really looks better and pinker then he has in all the other pics. So sad that as his little body is trying to recover from everything else he has to go back on the chemo and make it even harder. It's all so crazy! We love you! I am so grateful his little eyes are open and you can hear his please and thank yous!

johnjillhuz said...

Crystal, I am so sorry about his sleeping issues. I'm sure that also means that you are not sleeping. I hope that you are able to find time to sleep.

Erin used to get really mean and sometimes uncontrolable when she was sedated so much during one of our chemo rounds. Her sleep was really disrupted and her high fevers just made it all worse. Maybe Skyler hasn't been sedated lately, but that Versed and Ketamine always seemed to make things worse after she woke up.

Please know that we are praying for you guys. You are strong. You are amazing fighters!

Amanda said...

I have been MIA since Millie's been sick and we've been visiting the hospital for her, but I am catching up now.

I am so glad you guys are on the 4th floor. How great! Skyler is looking much better and that's great that he is off dialysis. I feel so bad that he isn't sleeping, that's hard on anyone, but he must be exhausted.

I'm sad I wasn't able to be at the Mom's get together, but I hope you had a great time and that I am able to actually meet you some day.

Merry Christmas!
Amanda and Millie