CJ's Thumbs Up Foundation

Med. residents

Pretty rough night for both me and Charlotte. She didn't settle down until way past my bedtime and then was up again about 4 am complaining of pain and HUNGRY. She ate a whole bowl of cereal and milk. Complaining of more pain even after the T3. Just as nurse Princess was about to give her some morphine, she fell asleep so we just let her sleep. Of course, then the litany of med students/residents came in starting at 6 AM. Three of them....all wanting to do the same thing, ask Charlotte the same questions, and ask me the same questions. All spaced about 20 minutes apart. Sheesh.
My biggest concern right now for her is this head pain. While I really want to go home tomorrow, I would like to think that her pain management was more...managable. I guess we will see what the doctors say today.
I must get ready for the day. Big meetings and work...where's my coffee???

Let's get it Moving

Kinda in limbo land right now. Doctors have visited (while I was out this morning) but no real word on a release date/time. More and more we are feeling like the pain is due to actions in the belly, not the head. Her belly is SO distended and now she is telling us that her bottom hurts. Poor thing! We have tried a lot of things including miralax, suppositories, squeezing play doh and her animals, eating apples and drinking juice, the WORKS. Doctors trying to problem solve about next step.
She did get up and about a lot today, including a visit to one of the playrooms. She put together a penguin puzzle with help and we did some play doh fun.
Resting now and trying to push that poop out.
Rachel

I love how poop is such a borderline taboo thing to talk about even though we all do it one way or another. We don't want to acknowledge it when things are working smoothly but boy, does life stink (literally and figuratively) when it doesn't! Charlotte is showing us that right now.
So let's embrace our poop! Let's become one with our poop and show that world the power of our excrement!!! Go to your windows, open them up, stick your heads/butts outside and shout/fart to the heavens, "I'm constipated and I'm not going to to take it anymore!!!"
You may think I have lost all sense of decency but I actually want to minimize people's aversion to thinking about this. I believe strongly in the power focused at us at the moment and I would love everyone to focus their thoughts, prayers, meditations, yes, even your visualizations, on Charlotte's plight of poop. She's very unhappy.
Thanks,
Rog


Love Roger's most recent post. Ah, the power of the poop!
The bad news is that it doesn't look like tomorrow is our "release date". I think we have been denied our parole another day. According to nurse Traci (who I think is AWESOME since she knows all the words to all the Yo-Gabba-Gabba songs and I don't), they are going to start her on a diuretic tomorrow that will try to relieve some intracranial pressure and, of course, we are still working on the digestive actions.
So it looks like we will

On a more serious note: I just read Arlene Unger's post and I wanted you to know some about her late husband, Bruce.
First off, he was a brilliant man and unafraid to question anyone who he thought was giving him the business yet at the same time, he was affable enough to make you glad to come clean to such a nice guy. I loved sitting with/near him at faculty luncheons, when I could find a seat, because he was always good for a thought provoking, if slightly verbose, grilling of the speaker! :-)
He also LLLOOOVVVEEEDDD oldies and had a vinyl record collection to die for! A few times he came into my radio show at WHAN and did an oldies segment for R-MC WAVE Radio. He also guest lectured for my History Of Rock class at R-MC and I learned about as much as the students and completely stole his PowerPoint presentation (with his blessing, of course)!
It seems ironic that a brain as powerful as his was the location of what felled him. Maybe not. Maybe in a weird way it was fitting. Doesn't make it any more pleasant that his life ended that way. Maybe I'm just rationalizing what I don't understand. Been doing that a lot lately.
Here I am trying to make you think I was best friends with him or something but I actually only knew him for a few years. He made you feel that way. I really liked him.ll be here a while longer. We will continue to "make do" and will continue to pursue all her therapies. Keep thinking non-constipating thoughts. Think of flow...free flow...for her head and her belly....
That is all...


Thanks for the support regarding all the constipation. We do know that the combination of pain meds, multiple anaesthesias, a basically sedentary lifestyle for three weeks, and other issues have all contributed to her problems. We have tried some dietary options as well but my personal opinion is that if an enema (or in the case of some days multiple enemas) isn't working, we have some serious trouble! Maybe we can use some of Roger's flax seed stash to make some cookies/muffins.
She is in a lot of pain right now but did eat a good dinner (ravioli, broccoli, peaches and coco-lax milkshake!)
Gotta go distract the princess as best I can.

Announcing the Care Calendar!

We have launched our Care Calendar site. There is not much there right now. However, when we get home, we will fill in more regarding our domestic needs. We are expecting we may need help with housekeeping, getting Charlotte to/from therapy appointments, hanging out with her from time to time, various errands, and possibly meals down the line.
For right now, as we are on "standby" for our hospital departure, our needs are pretty simple: we need some folks to hang out with CJ at MCV in order to give her parents some relief. At this point, we have only requested help through Friday but will update things as we know more about our hospital stay.
To access Charlotte Reynolds's personal CareCalendar site,
visit http://carecalendar.org/logon/11844 and enter the following
information in the appropriate spaces:
CALENDAR ID : 11844
SECURITY CODE : 1806
If you have any questions about this calendar, you can also contact Roger or myself directly via email or our various phone numbers.
Thanks and keep checking often!
Rachel