Tuesday, January 29, 2008

Not so fun

Facts & feelings, right? So let me get to the facts.

Today: day 1 of methylpred treatment for Tot.

Getting there was fine, she knew we were going to say HI to Dr. "Keen Berry". But she was cool! Still very proud of her binky! Saw Kingsbury before, he did a body check, all looks great. She's gained 2 lbs in a month - blame the steroids. He could see it in her cheeks too. I wondered what that was about, if we were just going through a chubby cheek phase, but then walking down the hall of the Day Peds Center, you saw them ALL with chubby cheeks, babys, kids.

She wasnt even happy to get her height done or weight done... this is an indicator of what is to come. But thank goodness i brought the leg warmers for her arms, it helped get her mind off of what was going on with the arms. Yay, one point for mom!

So... serioulsy the opposite of fun. She was tired, but so not happy that she wasnt even hungry. They hooked her up & they did a good job with that & that was fine, we worked through the screaming. And after we got her hooked up we met my HS girlfriend Molli (follow me here), Molli's husband's sister. So Molli's sis-in-law is a Peds Nurse, she came & found us, was SOOOOO sweet, so supportive, oh my word, I hope she is there tomorrow!

So back to our room, where we brought DVD's cuz they said that they had a player, but one broke & anotehr patient had the other one. SO! we were left with THEIR Vhs choices... i didnt even think to bring vhs movies. So Tot had us up & down like 8 times 5 minutes into every movie "I dont like this movie daD!"

So here's the machine that Tot was hooked up to (Yes, Ryan's company sells them... you gotta love the schooling from Ryan if you ever get the chance to hang out in a Dr's office or hospital wtih him!). And hopefully tomorrow will go better, but he had this med, slowly drip throughout an hour. Tomorrow, speed it up to 1/2 that - 30 minutes.

See how (not) happy she is?!
THEN! After it was all done - her vitals were too high for their liking, so they gave her this other drug to make her liver pump out the pee, so she would stop retaining so much fluid. By now Charlotte has pretty much had it. She's done with this place. She's let everyone know that. She's waving goodbye like she will never have to see them again. Tomorrow is going to SUCK!

A. I hope that tomorrow goes faster.
B. I hope that her vitals / pressures are lower (i dont know how to help that, I just hope - they said try & keep her calm. Uh huh. Cuz today I just watned her PISST & angry & that's what we were shooting for right?! UGH!)
C. I hope that Charlotte likes all the VHS videos & borrowed DVD player (thanks Dana) & dvd movies mommy brings!!!
D. Can i now stop going on "snack buying binges" at every store I go to??!?!? Even online. i just want to bring it all....

So we have left to go: Wed & Thursday... We asked Kingsbury "What will you see as successful on Friday?" He said clear or a trace in the eyes. There's just not enough cases that are just like Charlotte's to compare what's normal, what would happen after this... Charlotte has not been the norm....

I admitted I dont want to see a trace, I dont trust a trace. and then we talked about how a trace could be different from one dr. to the next, that we need to find out from Goodman how she would define trace. To me, I guess a trace is a trace, I want it clear. I want this done, I dont want any lingering partiers at all - everyone go home. Because the party is over, & we need to keep you all at bay, i feel like if you have one, they might invite their friends again. Not cool. Not in Charlotte's house.
MOMMY WANTS THE UVEITIS TO STOP PARTYING AT CHARLOTTE's!!! WE ARE DONE WITH YOU!!!!! TWO MORE DAYS - that's all she can do, I dont know if we could do this again. Lord give me strength just to go back tomorrow... And help Charlotte to understand we have to do this & PLEASE make the process go quick!!!!


Lori said...

Having a 2 year old also, I can't imagine. You're such a wonderful, strong Mommy...and your girls are so lucky to have you. Hang in there. Our thoughts and prayers are with you all...

Lisa Milton said...

Oh suck. Double suck.

I hate that stuff myself, but as an adult, at least I know what needs to happen.

But at 2, this is just meany adults, poking and prodding.

Please take care. Hope today was easier.

(And that puffy cheek thing - 'moonface' - is the steroids at work. I could shoot you a picture of myself from last spring, for laughs, because it is so obvious I am on drugs. Not fun drugs, either...On lower doses, it fades.)