Wednesday, February 11, 2009

Spinal tap

Working throught the new pain

Quick note before class.
CJ had a pretty good night. She woke up about 4:30 during a vitals check and I was forced to read Dora books to her for well over an hour which means I now have Dora Loves Boots virtually memorized from the multiple readings. She complained about head pain a few times and got some regular Tylenol (no codine) pretty early. No more after that. She fell back asleep at about 10am and slept until just before I left.
They were supposed to take her for an LP early as well which meant CJ couldn't eat. She was pretty hungry from the getgo this morning and I fended off more hunger complaints than headache ones. I asked when the tap was supposed to happen and the concensus was "hopefully early."
We all know what comes next. 7:00 came, no word. 8:00, same. 9:00, 10:00...Fortunately she fell asleep but once 1:00pm rolled around, I made it very clear to the staff that if she woke and asked for food, I was going to feed her and they could reschedule the LP for tomorrow. Our nurse, God love her, was being kept very busy by her other patients but found time on multiple to call and pester the various depts. involved and of course everyone told her to contact the other dept. Finally, they got the hint and just as she started waking up, we got word that it was on. They actually brought someone down from an adult floor to do the procedure and it was great because it was a doctor we already knew and wh loves Charlotte.
Now Rachel is back on for a couple nights and we have a DATE on Saturday thanks to Auntie 'Retta.
I'll let Rachel tell you about the Charlotte wrist bands...

Spinal Tap

The spinal tap is now finished and all went VERY well. They knock her out for this procedure so she went down fast and came back as if waking from a nap. Her pressure was actually 9 when they started (it was 8 when they finished the last tap) so that is very good news. It means that her ICP (Intercranial Pressure) is regulating fairly well.
Once she woke up, we had to wait a little while before feeding her but she is now chowing down on her "appetizers" while waiting for dinner: chocolate pudding, apple jacks, and choco-lax milk!
Had a wonderful visit with Dr. Dan (McCaffrey) and he made her smile and laugh quite a bit.
A few complaints about her head but not too bad.
OK, about the bracelets: Melissa Owens, my friend and colleague in the Virginia Music Therapy Association (and MT extraordinaire at MCV) has organized the purchase of these wonderful bracelets. They are similar to the Lance Armstrong "Live Strong" bracelets but they are hot pink (of course) and say Prayers for Charlotte on them. Anyway, VMTA is going to use them as a fundraiser for Miss Charlotte. We will be taking a few and Melissa will be taking the rest. Let us know if you want one. (operators are standing by...) :-) I think we will probably take some to the store as that will probably be an easy central distribution point.
Not much news to report other than that. Getting ready to meet with one of the docs about some digestive ideas. Will report more when I can...

Maybe going home?

A very brief but positive update:
Dr. Tye was in to see her and as her ICP is at a great level, her white count is back to normal, and they have not been able to find anything in her cultures, he is doing all that he can to get us out of the hospital ASAP.
We basically need the OK from Shaaron (PT) to do outpatient vs. inpatient and I am sure a few other things will need to fall in line, but we are cautiously optimistic about the end of the week. In fact, rumor has it Dr. Tye has promised pizza to the staff if they can get us out of here by Friday. I offered to chip in!
Charlotte has just called for me to come sit with her so I must sign off...
Yay! Good news!

Some smiles

30,000+ hits. Ain't dat su'm? I've seen some with 25k and 18k but not 30. My mind keeps being blown. And now the braceletes? Nuts, man!
Did I mention that I taught Charlotte the name of her middle finger is the "Business Finger?" Not that we have been actively encouraging her to use it in any impolite manner but she'll figure it out soon enough and I think any scolding from me will be something like, "No lima beans for a month, young lady!"

Learning the ups and downs of this

Cue the music...
"What a difference a day makes...24 little hours"
I guess that quote can go either way but at least in this case it's from bad to good. Or so it seems. She had a good evening although she was most insistent on watching LOTS of Dora. We did compromise and she watched Madagascar 2 (thanks Ms. 'Nette) for a change. Daddy also brought in the portable DVD player since the one in our room has no remote. Your only choices are play and stop wich means when there are multiple options on a DVD, you really don't have ANY. This was handy for many reasons, not the least of which was that Charlotte got to watch Dora on the portable DVD player while mommy watched LOST (with mute on and captions running) on the TV. I probably missed a few things but that's what my podcast and a re-watch on is for! At least I got to see it!
She is still complaining a little bit about the head pain but it's not too bad.
Ok, I spoke to she's really complaining but I think she is just trying to settle down to sleep. Just got the pain meds and they haven't kicked in yet.
More about the bracelets: we have requests coming in from far and wide. I am going to coordinate with Melissa soon and figure out A) the easiest/best way to distribute the ones we have and B) if we need to order more. Check here and/or on the Facebook site for updates o that.
I am signing off as I am tired...Here's hoping tomorrow is another day filled with good news and tonight is filled with (some) sleep.


Updated and CHANGED---Important-PLEASE READ
After my last post, I got an email from Melissa and here is what I think we will do:
If you would like a HOT PINK Prayers for Charlotte bracelet, please email Melissa directly at Please put the word "bracelet" in the subject line of the email. In your email, please let her know:
Name, mailing address, phone #
# of bracelets wanted
dollar amount of payment/donation
If local, please indicate whether or not bracelet will be picked up at RnR.
Melissa will coordinate with you on addresses for mailing. We are asking for a minimum $3 donation per bracelet. Any bracelets picked up or delivered in the local Richmond area, 100% of the proceeds will be deposited into Charlotte's account and used for her health care expenses. Romp n' Roll-Virginia Center will be a central "bracelet spot". We will probably have some at our home (if you stop by for a visit) and Melissa can also help coordinate bracelet delivery as well.
For bracelets that will be mailed out of town, we will receive the net proceeds after mailing expenses. If you live in a geographic area close to others who may want bracelets (yes, I'm talking to you folks in CO, NM, and FL), please try to combine orders if possible to save on cost.
The initial order was 100 bracelets. I am thinking just based on the email and caring bridge requests we have already received, we will be placing another order soon. The more we order, the less expensive the production cost so please email Melissa as soon as possible to put in your request. We can always do a third (or fourth) order as well...
This is so exciting! I know folks have wanted to find a way to contribute and what a great tangible reminder of our dear, sweet, princess.
Checks can be made out to Charlotte as all monies will be deposited directly into her account.
By the way, if you have already donated so generously to our cause (and many of you have), please let Melissa know that you would like a bracelet (or two) and we will be happy to send you one or figure out a way to get one to you.
HUGS to all,

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