Saturday, April 4, 2009

A Lot of "Hurry Up and Wait"

Charlotte had a pretty good day yesterday. In typical hospital fashion, it was a lot of "hurry up and wait". We got to the clinic early and got that "nasty catheter" removed. She immediately seemed to feel better. After some lab draws it was off to radiology. She again went easily into the MRI. It was kind of weird for me this time as it was the first time she had an MRI when she was not admitted to the hospital. We were taken to the heart catheterization recovery area which is where they bring everyone who is coming out of anesthesia, etc. from procedures. Anyway, the nurse said the she did very well and sang Frosty the Snowman as she went to sleep. Some of the nurses mentioned that kids frequently wake up grumpy after anesthesia but another nurse said, "No, when they go to sleep easily and peacefully, they wake up peacefully. And Charlotte went down peacefully". Sure enough, when she finally DID wake up (it took a while) she awoke with a smile on her face.
Dr. Tye and Joanne came down almost immediately to read her scan and as Roger mentioned, it did look good. Not a lot of shrinkage but no growth either so that is good. Dr. Khan looked at it later and concurred.
While Charlotte rested, I went down to Christopher's Cart and got chicken and tuna salad lunches for me and mom. If you've never checked out Christopher's while at MCV, you are missing out. Relatively healthy, very yummy, and affordable. And it sure beats the crowds in the cafeteria. Highly recommend.
After Charlotte woke up, it was back to the clinic to wait for a bed on the 7th floor. It took a while, apparently because Peds was very busy yesterday. Charlotte even ended up on 7 Central (the "big kids" area) instead of 7 East because of the crowd. So we have a new set of nurses to get to know but many of the faces are still the same. Had to go through all the requisite processes of getting settled (forms, getting water/juice/etc., finding a remote control that works for the TV...all the fun stuff!). They FINALLY started her on IV fluids about 6:30 PM (apparently they had trouble locating a free IV pump and cart) and I left the hospital around 7 PM. She was excited about her slumber party with granny. Chemo should have officially started sometime after midnight.
She really was in quite the good mood yesterday. Everywhere we went, people smiled and waved at her and she almost always waved back and even engaged many folks in conversation. I think maybe she wrote the book on "How to Win Friends and Influence People". She has never met a stranger and can charm the socks off anyone!
Roger and I got a date at Casa Grande last night. First time I had been in there in a long time where I had to wait for a table. That place was hoppin'! Now it's off to a full day at Romp n' Roll and my turn at the hospital this evening.
Hope everyone enjoys their spring weekend.

Update from Rachel:
A full day of work for Roger and Rachel and a full day of fun (mostly) for Charlotte. According to Granny, she slept well and has received the methotrexate. Plus all the regular meds for keeping the poop moving, keeping the nausea at bay, etc. Her day has been spent with lots of her regular activities including walks through the halls, visits with nurses who took care of her on other units, and videos and coloring. She was very happy to see mommy and daddy and I think Granny was ready to go home to her bed and a nice dinner (thanks again, Granny!!!).
Now we are getting a little family time before it's mommy's turn to take the night shift. Not much news to report. We are definitely feeling "at home" here at MCV and that is probably not such a good thing...except that it makes the whole experience a little bit easier, I guess.
Hope everyone is enjoying this glorious weekend. We certainly saw lots of yard sales and other events going on today!

Final Update:
She's finally asleep. She was rather whiny all evening but had one good walk around the unit. We found out that her sugar was slightly elevated which may have contributed a bit to her jittery/agitated behavior. I guess they will adjust that through her IV bag (i.e. the amount of sugar in the fluids). [Actually, as I'm typing this, nurse Katie just came in to say that her sugar is down again but still not "normal" so they are going to give her a bag with 1/2 the sugar content...]
Any oral meds take so much prompting and prodding and bribing. It's exhausting. Even chocolate is not a surefire bribe these days. Then when we tried to bribe her with one of her favorites (Tylenol meltaways) we found out that we had to get the little bottle of tylenol and all its contents approved by the doctor and they have to keep it at the nurse's station. Just a CYA move on the hospital's part because insane people often bring other (unapproved) meds in medicine bottles and then try to give them to their kids. We did finally get the Senna into her chased with a tylenol meltaway and chocolate milk. Then more drama when they had to put the bag over her "area" to catch urine for a sample. Of course, there was the "it's a catheter" terror despite our protests that it was just a bag with NO needles and NO catheter.
This, to me, is the saddest part of this process. My child who until this point took all kinds of medicine with no question and never feared ANYTHING (possibly to a fault) is now fearful of every procedure being done to her and wants full explanations of what, when, where, and why everything will happen. And even with that there is still fear. It is so sad because this disease (and the process of curing it) has changed my child and as many of you know, any kind of change is a grieved breaks my heart.
In the past 24 hours, she has developed more dark circles under her eyes. More and more she looks like "the kid who has cancer". She's still cute as ever. Don't get me wrong. Hands down she's the most beautiful kid on the 7th floor tonight and she could still win beauty contests anywhere she goes with that winning smile and personality. But it is still sad.
Roger was more than frustrated today with many things (namely ME). I'm sure he will give his own recount of the day's events including his forays into the world of the Confederacy but I'll use this forum to give my own public apology for making life difficult (I'm trying....) and hope he has a better day tomorrow. At least he gets to work a birthday party for one of our favorite families (the Cadienas!)
Well, while she sleeps I need to try and mom was right. This unit is much noisier than 7 East. Not really sure why but sound just seems to carry differently and I think they use the intercom more. Hopefully it won't be too bad tonight.

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