May 1, 2012 (Day -6)

Holy moly what a day!! I thought today was going great....woke up to nothing, but positive things from Cole's nurses. Then he got his chemo with no hiccups....then the day took a turn!

Cole's night nurse came on and his fluid machine kept going off so she came in to flush it and realized it's clotted. We can see one small clot within the tubing, but she seems to think there's a bigger clot at the end because it won't even flush. I never say the word hate, but I HATE this line! I hate this line with a passion. He's had nothing but problems with it since day 1! His nurse is calling the on call dr. to figure out what to do...I have a gut feeling he'll be in for placement of a new line though...shocker! I don't mean to sound so negative, but I'm so mad...I just don't understand why...but I don't think I ever will. Why Cole? Why does he have to endure this stupid disease and the treatment that comes along with it?! It's no freaking fair! I say that, but in the same breath I think about a little boy Jenson that's batteling with HLH and they aren't expecting him to make it & a little girl Serenna is on and off again doing good... Iknow I probably sound selfish, but of course I only want whats best for Cole!!

This room is starting to get to him and I. He can't get on the floor and play because they say it isn't sanitary so if he plays he has to stay in this stupid 1 crib in the room that's about 5x7 in size! & I've cleaned this room and organized and reorganized over and over...it's starting to drive me nuts...who knew I'd miss cleaning, but I do so much!! I miss everything having a place and everything being in it's place as opposed to living out of suitcases like we are now.

I have so much to be thankful for, but I'm just so overwhelmed with everything going on. I mean who knew something as simple as eating in the same room as Cole would be something I take for granted...anytime I eat or have to shower I have to go down the hall and leave him in the room screaming. Today I did it more than I ever have before just because I needed to get out of this room, but I don't like him screaming so needless to say I guess I'll lose that extra 10 lb. I've been fighting to lose.

I'm so thankful to be able to vent on here because I might sound crazy but yes I talk to Cole but of course he doesn't talk back quite yet lol. He's starting to scream and fuss so I guess we'll try to get a little rest until they have to come stick him for labs since that stupid line doesn't want to work.

Until Next Time!

-Cole's Mommy