Parents Have to Be Advocates for Their Children

Just about 4am (as you can read intelligent CJ lover) and we just had an interesting experience. It's also reason #42 why parents have to be advocates for their children.
Because the central line pulled out, they had to put a traditional IV line in her hand-not a lot of fun. When I got here everyone informed me they would have to poke her again to draw blood for her labs and, of course, they couldn't do it at any kind of sane hour, NOOOOOOOOOOOOOOOO!!! They have to do it at 3am because that's when they have to check her numbers.
So,
I settle in at around 11pm to see what kind of sleep I can get from this very noisy room and slightly lopsided chair knowing what's coming at 3.
Now being the kind of guy who gets a little freaked out about oversleeping when there's an early wake-ups time, I was up just about every hour until 3 when, as usual, nothing happened. (Hospital standard time). The nurse came in to do vitals and in the back of my mind, I was actually hoping they had decided to wait. No luck. On her way out the door after the vitals check, she warned me it would be about 10 minutes.
It was more like 7. Which is good because it didn't give me the chance to fall back asleep.
So,
in comes the nurse and another woman, presumedly (sp?) to hold Charlotte down. Of course, that's my unpleasant jorb. (yes I said, "jorb." That's the next trivia challenge...) Turns out the other woman was the one doing the actual poking. That, believe it or not, made me feel better as the night nurse, nice as she is, doesn't seem all that secure doing procedures above and beyond taking vitals and hooking up drugs to the pumps. The other nurse, Mary, came down from the PICU and we all know how highly trained they are down there. She said she gets called out to do draws all the time because it's so difficult to access little veins.
So,
I at least feel like CJ is in capable hands. I get on the bed next to her and shield her eyes as they lights go on and the "big rubber band" gets tied onto her other arm, which she doesn't like and lets us know. I mentioned out loud that they should have some kind of topical cream that would numb the pain right at the site. (There's a really bad movie in there somewhere with Phil Hartman and Sinbad involving liquid novacaine and mistaken idenity.) Can anyone tell me why they don't use it in hospitals for little pokes and things like that?
I'm thinking, "This is REALLY going to suck. I'm getting ready to help them inflict more pain on my baby and she'll be wide awake screaming and I'm never going to get a shower." (Yeah, selfish, I know)
Then I remember something the night nurse mentioned, totally in passing just after Rachel left, about pulling blood from the IV line and how she was scared to try it because it might pull out the IV which would be far more tramatic for Charlotte. Almost in desperation, I said, "So there's no way you can do this through the IV line?" Nurse Mary from the PICU looked up like the lightbulb went off and said something like, "Hey, let's try that."
Bless her and all her progeny from here to the mext millenium. It worked and all CJ had was some minor discomfort from the "big rubber band." She was out again in about a minute, and I'm not exaggerating.
Of course, I'm wide awake and about to get my wonderful shower.
So let that be a lesson to you. Ask those "dumb" questions and be the obnoxious, persistant parent.
In my hyper emotional state, I think "Mary" just made it to the list of potential names for future children/pets behind Tye, Joanne, Kahn (only as a Trekkie pseudonym), Melissa, etc...(about 10 others)
Speaking of that, we forgot to mention that Charlotte went by the PICU for a walk and just happened the see Nurse Melissa and another nurse, whose name I'm ashamed to say I've forgotten, near the front doors. They certainly remembered her and came out to fawn (faun?) all over her. She didn't mind.
So,
After having Leah's death weighing pretty heavily on me for most of the evening, we had a sliver of a good thing happen. It's all we can ask for, right?
The spring fling at Primrose went smashingly and a good chunk of money was raised for A.S.K. in CJ's name. Thanks to all there including the teenage volunteers and especially to Karen Giles who allowed me to leave and go perform with John Robison from Southern Horizon at the Confederate Heritage Days celebration down at the Old Chester Courthouse. (There's some irony in there somewhere)
An aside: Although I really love playing the music and I'm becoming a student of the history behind the "War of Northern Aggression," I think some folks need to realize that the Civil War is over. I used to think that sort of thing was just reserved for geeks like me who got caught up in the Renaissance Faire mentality. (Man, I loved those days!)
Hey, did I mention we're having a head shaving party Friday?!? :-) The golf tourny and other various fun-raisers are being planned and I'm blissfully unaware of most of the details. Just point and tell me to go, I'll be there. You'll probably know about it before I do.
Wesley Berry's family (who we met here) is having a golf tournament Friday April 17 up Cameron Hills Golf Links in King George County. Romp n' Roll is going to sponsor a hole and donate some prizes. Here's the link to a story about him:
http://fredericksburg.com/News/FLS/2009/042009/04032009/455786
Go play a round for us.
It's now 5:00am and I still haven't showered. Here I go.

A Quick Update before going home for the day:
It was a great day at Romp n' Roll and Roger and I have been busy all day. Roger is now up in Caroline County launching our Adventure Classes at Ms. Alisons!
Charlotte is doing ok from what I understand. We FINALLY got a call from the surgeons asking for permission to re-insert her Central Line and that will happen first thing tomorrow morning. I don't have news on her methotrexate levels but I understand she was peeing like a racehorse today and eating well. Not sure if she's pooped.
Thanks to the Masseys for visiting with Easter Baskets. Riley's second grade class actually made baskets for all the kids on the floor and delivered them to Child Life today. What a sweet gift!
Now it's time for me to call gramps and get picked up from work. Did I mention that the alternator in my car died? More joy to the world.
On a positive note, I spent the morning running errands and got to listen to my This American Life podcast which was full of fabulous stories (as always). And through the rain I got to see a pretty cool rainbow while trekking down I-295. Plus I got to hang out with some pretty cool kids at Romp n' Roll today! At least I can find some joy in the day.
Time to sign off...my chariot awaits.
Rachel

Another Great Day for Charlotte. She is Amazing!

I am changing the time zone to "Hawaii Time". Maybe that's wishful thinking...
Another great day for Charlotte. She is amazing!
Yesterday, I came home from Costco with three Nandina plants that John had helped me pick out for the front yard. Charlotte greeted us at the care and proceeded to ask all kinds of questions about what we were doing. She said, "How many plants did you buy?" and I said, "Well, you tell me." So she responded, "You bought the number of plants that match my age." WOW! Pretty higher level thinking from that kid!
For those of you wondering about further plans with the Head Shaving Party, the current schedule is that the party will be Friday, April 10th from 3-8 PM at Romp n' Roll (Virginia Center) with lots of play time for the kids. We will probably do the actual head shaving/decorating at about 6 PM to allow for folks to get off of work, etc.
Bob Flanagan and some other folks from the Ashland Jaycees have stepped up to take the reins for this current project. If you would like to coordinate efforts with him, please contact him at bob@dewre.com
I can't think of anything else to say tonight. LOST was great until it started tugging on those "mommy" heart strings. Damn that show!!!! I'm going to try to be brave and watch the series finale of ER tomorrow but I know it will be one big bawl-fest.
Time for night-nights. Early day at the clinic tomorrow.
Rachel

Update:
The girls are off to see Dr. Kahn.
Urgh.
Earlier, I had been trying to talk to Charlotte about what to expect and all that but this time, I just couldn't bring myself to ruin that great mood she's been in all week. When I tried to bring it up last night that she had to go back in and see Dr. Kahn about the "headache in her head" her face visibly darkened and she said, very matter of factly, "My headache's all gone now." Feel kind of sneaky not warning her better about today.
Gotta love that parental guilt.
Gotta go do Romp n' Roll To Go at Primrose. Thanks to Karen Giles for helping out this weekend with the Spring Fling. Did I mention that Primrose is using the event as a partial fundraiser for A.S.K. in Charlotte's name?
Thanks guys.
p.s. Where is Rarotonga?

Update, Today was Kind of Rough:
And now we begin the slow descent...
Today was kind of rough. She went in first thing for the catheter. She knew it was coming so despite getting to watch Strawberry Shortcake on DVD, having all her favorite loveys close by and mom's hand to hold, the whole experience was rather traumatic. Chocolate milkshake after it was finished made it a little better, I think.
We got home around lunch time to find John and Kolbey cleaning the house top to bottom! Excellent!
She spent most of the day on the grumpy, clingy, whiny side. She knows that she is going back into the hospital tomorrow and she is not very happy about it.
Meanwhile we are mostly packed and ready to go. Kind of getting this routine down to a science with what we need, etc. We will go straight to the clinic in the morning for blood draws (labs) and then down to Radiology for the MRI. And then (hopefully) we will get admitted to the 7th floor without too much delay.
The plan is for granny to actually stay the night Friday night. Rachel is on duty Saturday night and Roger on for Sunday. I am sure there will be more updates over the next few days.
Big thanks to Bob for jumping in with both feet on the Head Shaving party and for all the other "heads" that have volunteered. I think plans are slowly falling into place.