Oi! I keep not learning my lesson.
Had a really long post done and I had even highlighted and copied it just in case but the computer updated itself when I was doing something with Charlotte and restarted, which I guess reset the clipboard. Drat!
Suffice to say we had good appointments today including audiology and a followup with the Children's Cancer Center.
Charlotte will NOT have to be NPO for chemo which means she can eat breakfast.
Her topotecan will be administered via IV just like at MCV.
Her temazolamide (sp?) will be compounded into liquid form. (More chocolate for breakfast!)
She won't have to tace accutane while on proton therapy due to its effect on the skin.
They hadn't read the MRI scans as of her appointment time but it should be available on Mymdanderson.org very soon if not already.
Tonight we are going to the circus at Reliant Stadium courtesy of THE HOUSE. The tree huggin hippie in me says we shouldn't go because of animal rights issues but the exhausted dad in me says my daughter will love it so we're going. I'll try to re-compose the long update later.
Showing posts with label IV. Show all posts
Showing posts with label IV. Show all posts
Wednesday, July 15, 2009
Monday, June 22, 2009
First IV Infusion of Topotecan
Back to reality,
Rachel gets to take Charlotte to MCV today for her first IV infusion of Topotecal. This will be an every weekday event for many many months. There's an oral version but I sincerely doubt we would be able to get CJ to take it.
I'm headed up to DC today to be in a panel discussion about jazz vocal ensembles. Should be interesting. That means, however, that Rachel will be doing most of the work today. Keep her in your thoughts. Thank goodness for Phyllis and Kolbey.
Have a good day,
Rog
Update:
OK, So Rachel gets there and they DIDN'T HAVE CJ ON THE LIST!!! URGH! ARGH!!! DUFRNVG:SKSAD Hds!!!!!!!
How many times have we said it? The main thing keeping MCV back from beeing world class is communication. The CB community is full of stories of mis-communications at MCV.
Unfortunately, it isn't isolated by any means. There was a story on NPR just this morning about patient advocates and how necessary they are because of wide spread communication problems within the nation's hospitals. If you're involved with healthcare reform, there's one area that should be tackled first!
Breathe! Gotta go "panelize!"
Update:
Yes, more than a TAD frustrating today. We get to the clinic right before 10 AM and the receptionist says "you're not on the schedule". I told her that we had been told by Dr. Khan to be there by 10 and that he was going to put the orders in first thing in the morning for her medicine. I also told her that April (our nurse) also knew what was going on. She said April was in a meeting.
SOOOO....they work on getting us in. We actually got into the clinic before 10:30, got her vitals, etc. but then we waited...and waited. About 11 (after they had drawn her labs), I asked the nurse what kind of time frame she thought we were looking at and she said they were waiting on the order to come up from Dr. Khan (WHAT?????!!!!) I informed them that I was supposed to be at work by 12:30 and I was trying to figure out exactly what I was supposed to do. Not happy.
So I proceeded to leave the clinic (since I get ZERO cell phone reception in there) and make some phone calls. Fortunately members of our fabulous RNR staff saved the day and covered my class and camp...since I didn't LEAVE clinic till 2 PM.
In the meantime...funny story: I came out of our room as Charlotte was watching movies to make all of our appointments for the remainder of the week. One of the receptionists was flagging down Matt Bitsko (the psychologist) to get a spider that had invaded their office. They were asking him to "kill it". Well, he wanted nothing to do with the spider but I told him if somebody would get me a cup, I would take care of her humanely. I don't kill spiders. Bad karma...
The receptionists thought I was nuts but I scooped up Miss Spider (she was about the size of a half dollar) in a styrofoam cup and escorted her down two flights of stairs, out the building, and into some bushes. My good deed for the day and a chance to get some fresh air.
Charlotte finally got the Topotecan about 1 PM (preceded by Zofran) and then we were able to leave the clinic. As with many of her meds, this one can cause nausea, vomiting, diarrhea, and low blood counts so we will see what happens. Oh joy.
Now I'm at Romp n' Roll and looks like I will be covering Roger's classes tonight as he got stuck in the mess that is DC traffic.
Let's hope tomorrow's clinic visit will go a bit smoother.
Rachel gets to take Charlotte to MCV today for her first IV infusion of Topotecal. This will be an every weekday event for many many months. There's an oral version but I sincerely doubt we would be able to get CJ to take it.
I'm headed up to DC today to be in a panel discussion about jazz vocal ensembles. Should be interesting. That means, however, that Rachel will be doing most of the work today. Keep her in your thoughts. Thank goodness for Phyllis and Kolbey.
Have a good day,
Rog
Update:
OK, So Rachel gets there and they DIDN'T HAVE CJ ON THE LIST!!! URGH! ARGH!!! DUFRNVG:SKSAD Hds!!!!!!!
How many times have we said it? The main thing keeping MCV back from beeing world class is communication. The CB community is full of stories of mis-communications at MCV.
Unfortunately, it isn't isolated by any means. There was a story on NPR just this morning about patient advocates and how necessary they are because of wide spread communication problems within the nation's hospitals. If you're involved with healthcare reform, there's one area that should be tackled first!
Breathe! Gotta go "panelize!"
Update:
Yes, more than a TAD frustrating today. We get to the clinic right before 10 AM and the receptionist says "you're not on the schedule". I told her that we had been told by Dr. Khan to be there by 10 and that he was going to put the orders in first thing in the morning for her medicine. I also told her that April (our nurse) also knew what was going on. She said April was in a meeting.
SOOOO....they work on getting us in. We actually got into the clinic before 10:30, got her vitals, etc. but then we waited...and waited. About 11 (after they had drawn her labs), I asked the nurse what kind of time frame she thought we were looking at and she said they were waiting on the order to come up from Dr. Khan (WHAT?????!!!!) I informed them that I was supposed to be at work by 12:30 and I was trying to figure out exactly what I was supposed to do. Not happy.
So I proceeded to leave the clinic (since I get ZERO cell phone reception in there) and make some phone calls. Fortunately members of our fabulous RNR staff saved the day and covered my class and camp...since I didn't LEAVE clinic till 2 PM.
In the meantime...funny story: I came out of our room as Charlotte was watching movies to make all of our appointments for the remainder of the week. One of the receptionists was flagging down Matt Bitsko (the psychologist) to get a spider that had invaded their office. They were asking him to "kill it". Well, he wanted nothing to do with the spider but I told him if somebody would get me a cup, I would take care of her humanely. I don't kill spiders. Bad karma...
The receptionists thought I was nuts but I scooped up Miss Spider (she was about the size of a half dollar) in a styrofoam cup and escorted her down two flights of stairs, out the building, and into some bushes. My good deed for the day and a chance to get some fresh air.
Charlotte finally got the Topotecan about 1 PM (preceded by Zofran) and then we were able to leave the clinic. As with many of her meds, this one can cause nausea, vomiting, diarrhea, and low blood counts so we will see what happens. Oh joy.
Now I'm at Romp n' Roll and looks like I will be covering Roger's classes tonight as he got stuck in the mess that is DC traffic.
Let's hope tomorrow's clinic visit will go a bit smoother.
Friday, April 24, 2009
Charlotte is Finally Home
Charlotte is finally home after the never-ending-discharge process. We "started" going home around 11 AM and after waiting for orders, getting a dressing change, getting the last bit of antibiotics, and more all around waiting (oh and having to fix and re-do the discharge orders), we FINALLY went home around 3:30. We made it to Sonic just in time for Happy Hour and milkshake-shake (yay). Then I left Charlotte in the capable and enthusiastic hands of Uncle Kolbey and Grandpa while I drove down to Romp n' Roll, got the loaded-up SUV, and unloaded the obstacle course at the Children's Museum for tomorrow's Connections Fair.
Now back at Romp n' Roll and relieving Roger who had a HUGE day teaching four classes, hosting a playdate (happy birthday Gretchen) and doing many other things. (Good job Rog!)
Much thanks to Grandpa for staying the night at the hospital and giving Roger and I a bit of a respite. We are still both running on fumes and adrenaline but somehow we keep going.
Everything about Charlotte looks better and her white count JUMPED overnight so that is good news. We went home with IV antibiotics, oral antibiotics, but no other meds so that is good. She seemed full of energy today and continues to charm the socks off of anyone whoc comes to see her during the day.
Now the "new" news: while we checked out with the Hem/Onc team today, the doctor said, "Well, since we were supposed to start chemo today, I guess we will see you in the clinic Monday and get things rolling then." To which I said, "HUH???????" They did a double check and sure enough, this cycle is 22 days (not 28) so we were actually due to start today after all. SOOOOO, we are going back to the clinic on Monday to check labs. If everything is still a-ok, we will get the dreaded catheter inserted and will probably start things back up again on Tuesday. Now I'm REALLY glad Grandpa is here since he can probably stay a few more days until my mom can get here on Wednesday. Any child care needs for next week are on hold again so we will let you know if you signed up to help. Meanwhile, Roger and I will somehow need to reconnect, look at our schedules, and figure this out.
And now for this weekend's schedule: We are going to try to contain and curtail Charlotte's activities with others as much as possible. As much as she loves social time with her friends, we are ULTRA paranoid about germs right now. Roger and I will be going to the Children's Museum tomorrow morning, then Roger is off to his gig at the Iron Works with Southern Horizon. Then it's off to the Benefit Dinner at the Elko Center in Sandston. Then home to collapse, I guess.
Sunday is a Romp n' Roll day for mom (but not a full one); just a half day I think.
WHEW!
I think that about sums it up for me. Again, we are building momentum for the next big fundraiser at Qdoba on May 3rd. Come on out for the burrito contest or at least to eat dinner that night. This is a great opportunity to support Charlotte and a great business that has really helped us. Lisa Branner, their marketing director who is putting this whole event together, brought me dinner and brought Charlotte balloons at the hospital yesterday, So sweet! Again, you can get more details about this event by checking out the calendar on the romp n' roll-virginia center website (I will put a link in the RESOURCES section of Caring Bridge) or email me or Roger.
Other small fundraisers going on as well. The way things are going with the insurance company, we will need them.
Rachel
Now back at Romp n' Roll and relieving Roger who had a HUGE day teaching four classes, hosting a playdate (happy birthday Gretchen) and doing many other things. (Good job Rog!)
Much thanks to Grandpa for staying the night at the hospital and giving Roger and I a bit of a respite. We are still both running on fumes and adrenaline but somehow we keep going.
Everything about Charlotte looks better and her white count JUMPED overnight so that is good news. We went home with IV antibiotics, oral antibiotics, but no other meds so that is good. She seemed full of energy today and continues to charm the socks off of anyone whoc comes to see her during the day.
Now the "new" news: while we checked out with the Hem/Onc team today, the doctor said, "Well, since we were supposed to start chemo today, I guess we will see you in the clinic Monday and get things rolling then." To which I said, "HUH???????" They did a double check and sure enough, this cycle is 22 days (not 28) so we were actually due to start today after all. SOOOOO, we are going back to the clinic on Monday to check labs. If everything is still a-ok, we will get the dreaded catheter inserted and will probably start things back up again on Tuesday. Now I'm REALLY glad Grandpa is here since he can probably stay a few more days until my mom can get here on Wednesday. Any child care needs for next week are on hold again so we will let you know if you signed up to help. Meanwhile, Roger and I will somehow need to reconnect, look at our schedules, and figure this out.
And now for this weekend's schedule: We are going to try to contain and curtail Charlotte's activities with others as much as possible. As much as she loves social time with her friends, we are ULTRA paranoid about germs right now. Roger and I will be going to the Children's Museum tomorrow morning, then Roger is off to his gig at the Iron Works with Southern Horizon. Then it's off to the Benefit Dinner at the Elko Center in Sandston. Then home to collapse, I guess.
Sunday is a Romp n' Roll day for mom (but not a full one); just a half day I think.
WHEW!
I think that about sums it up for me. Again, we are building momentum for the next big fundraiser at Qdoba on May 3rd. Come on out for the burrito contest or at least to eat dinner that night. This is a great opportunity to support Charlotte and a great business that has really helped us. Lisa Branner, their marketing director who is putting this whole event together, brought me dinner and brought Charlotte balloons at the hospital yesterday, So sweet! Again, you can get more details about this event by checking out the calendar on the romp n' roll-virginia center website (I will put a link in the RESOURCES section of Caring Bridge) or email me or Roger.
Other small fundraisers going on as well. The way things are going with the insurance company, we will need them.
Rachel
Thursday, April 23, 2009
Hoping to Leave Tomorrow
Well, now we are looking at leaving sometime tomorrow. Her counts are up and getting better. There are "sub levels" to her white count that they want to improve (her neutrophils). They are going to keep her on IV and possibly oral antibiotics for about 10 days but we should be able to do that at home. Meanwhile, it looks like we are still on track to start chemo (again) next Friday. Sometimes I'm not sure why we bother to leave the hospital.
In other news, we got word from Humana that they officially denied our first appeal so we are off to write more letters. Actually, my second appeal letter is basically written and we are getting Dr. Khan to write another one on our behalf. Humana keeps looking at this as a "convenience" decision on our part and not factoring in anything like Charlotte's age or the intensity of her treatment. Basically, they see it as our "choice" to keep her at MCV and since we are making that choice, we should just suck it up and pay the out-of-network costs. They think that since they are not outright denying her care, they have done everything they need to do. I'm pretty much resigned that will be the outcome at this point but at least we will fight one more round and say that we fought the good fight.
I had a nice walk outside today while Grandpa visited with Charlotte. I journeyed over to the Capitol grounds where it was just beautiful today. Dogwoods, azaleas, and tulips blooming everywhere!
Grandpa brought Charlotte a belated Easter basket filled with Hershey's Miniatures and Charlotte and I have been "sharing" her chocolates with the hospital staff, offering some to everyone who comes in her room. It is so sweet and a great way for Charlotte to engage socially with others. The hospital staff (of course) get all googily when she offers them a candy!
She also had a fun little playdate with the preschool teacher and two other kids on the unit. They played in the playroom and finger painted. Great fun!
Now she is back to her room and watching a bit of TV. Yo Gabba Gabba for a change!
Roger's dad will be spending the evening here so hopefully Roger and I will get a few minutes together tonight. Hopefully we will not be too exhausted to keep from collapsing into bed without socializing for a bit. That has become a big challenge recently.
Let's hope for a discharge from the hospital tomorrow!
Rachel
In other news, we got word from Humana that they officially denied our first appeal so we are off to write more letters. Actually, my second appeal letter is basically written and we are getting Dr. Khan to write another one on our behalf. Humana keeps looking at this as a "convenience" decision on our part and not factoring in anything like Charlotte's age or the intensity of her treatment. Basically, they see it as our "choice" to keep her at MCV and since we are making that choice, we should just suck it up and pay the out-of-network costs. They think that since they are not outright denying her care, they have done everything they need to do. I'm pretty much resigned that will be the outcome at this point but at least we will fight one more round and say that we fought the good fight.
I had a nice walk outside today while Grandpa visited with Charlotte. I journeyed over to the Capitol grounds where it was just beautiful today. Dogwoods, azaleas, and tulips blooming everywhere!
Grandpa brought Charlotte a belated Easter basket filled with Hershey's Miniatures and Charlotte and I have been "sharing" her chocolates with the hospital staff, offering some to everyone who comes in her room. It is so sweet and a great way for Charlotte to engage socially with others. The hospital staff (of course) get all googily when she offers them a candy!
She also had a fun little playdate with the preschool teacher and two other kids on the unit. They played in the playroom and finger painted. Great fun!
Now she is back to her room and watching a bit of TV. Yo Gabba Gabba for a change!
Roger's dad will be spending the evening here so hopefully Roger and I will get a few minutes together tonight. Hopefully we will not be too exhausted to keep from collapsing into bed without socializing for a bit. That has become a big challenge recently.
Let's hope for a discharge from the hospital tomorrow!
Rachel
Thursday, April 16, 2009
Charlotte is Back in the Hospital
Crap...crap...crappity crap crap...
We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.
She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.
No word yet as to how long we'll be in this time. We'll let you know.
In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.
Gotta run and get ready for Romp n' roll.
Rachel
Big wheels keep on turnin'....
Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!
Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE
If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.
About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.
On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com
I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...
Rachel
So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.
Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.
She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.
We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.
She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.
Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.
Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.
On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.
She has eaten a good bit, slept a little and is now in a very good mood. That's good.
Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:
http://www.youtube.com/watch?v=wsLqKAvKiQM
Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.
Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.
So off I go to entertain the princess.
We are back in the hospital. Charlotte woke up with a 102 fever this morning. Roger took her to the clinic and her counts are near 0. They also think she might have a Urinary Tract or Bladder infection. Joy.
She has been admitted to 7 East and they will do a blood transfusion plus possibly a platelet transfusion.
No word yet as to how long we'll be in this time. We'll let you know.
In other (much better) news, I met this morning with the Marketing Rep at Qdoba Mexican Grill regarding the fundraiser for Charlotte. They will be holding a Burrito Eating Contest with lots of prizes and opportunities to donate to Charlotte's cause. The date is May 3. More details to come in a future post. Will post on Facebook as well.
Gotta run and get ready for Romp n' roll.
Rachel
Big wheels keep on turnin'....
Thanks to Monica for that post in the Guestbook today about the Alligator Wrestler. Loved it and apparently it touched a lot of y'all too! I guess I can add Gator Wrestler to my moniker now!
Despite the setback, it's been a busy morning for me. I have posted a calendar of Charlotte's Fun-Raising events! It is on the Romp n' Roll-Virginia Center website. Go to the ABOUT US tab and then go to IN THE NEWS. Or you can just go HERE
If there are changes or adjustments to the calendar, I will let you know when an update has been posted. I hope this will help everyone get the word out and know about new events. Also, if you are on Facebook and have not joined the Get Well Charlotte Reynolds group, you can do that and stay up to date on the latest news and events.
About the May 3 event: Qdoba at Willow Lawn (they are a mexican grill with yummy burritos, tacos, etc.) is holding a burrito eating contest with proceeds to benefit Charlotte. Here is how you can help:
0. Enter the contest! There will be a $5 entry fee before May 1st and then a $10 fee after May 1st. All proceeds to benefit Charlotte. There will be "special" (i.e. simplified) burritos made for the contest and contestants will have 10 minutes to eat as many as they can. (Contest will be at 5 PM). There will be a release form available at the store that must be signed when you register. Anyone under 18 who wants to enter needs a parent/guardian signature. There will be great prizes for the winners and participants! Entry forms are not available yet but should be soon.
1. Come out to support the burrito eaters! Have your dinner at Qdoba that night (4 PM-close) and 10% of all sales will benefit Charlotte.
2. There will also be a fishbowl and prize wheel for additional donations.
Charlotte will be in the hospital at this time with her next round of chemo but we are hoping that Roger or I will be able to make an appearance at the event. I will hopefully have posters soon that will have more details about the event so you can publicize and share with others.
On this note, I need someone with a crafty bent to help. We would like to make a simple display board or poster with some pictures of Charlotte, some information about her "story" and maybe a way to list other upcoming fundraising and/or brain tumor awareness events. I think this would be a great way to promote ASK and some of the other Brain Tumor Support Groups in the area as well. This would be something that we could take to events held in Charlotte's name and/or her honor. If you are interested in helping with this, please email me at rreynolds@rompnroll.com
I think that's it for now. Gotta go do some actual Romp n' Roll work, I guess! Shhh...don't tell my boss I'm slacking on the job...
Rachel
So here we are.
Hopefully not for long. Let me first say that it's not nearly as bad this time as it was the first time we found ourselves here because of low blood counts. Damned inconvenient but at least she's been pooping regularly and we're back on 7-East which is more her age range.
Yesterday we went to PT and after a full day, as you already know, CJ fell asleep on my chest at around 2pm which was our first clue that she wasn't feeling 100%. Then through the rest of the evening, after she woke up around 5, she was whiny and grumpy untill I put her to bed around 8 or 8:30.
She slept through the night but I noticed that she was really warm when I came down to change her at 1:30am. Rachel got the thermometer but it consistently said around 98 Degrees. When I checked her again at 7:30, she was still hot and I didn't trust the temperal (sp?) thermometer so Rachel got a different one and Charlotte actually let me place it under her tongue. That showed 102.2 so we called the HEM/ONC Clinic. They said bring her in and "pack a bag" just in case. We would have anyway but it was good thinking on their part.
We came into the HEM/ONC clinic around 9am and were there long enough to watch "Over The Hedge" (very funny), and a couple of Doras. There was drama when one of the nurses wanted to look at the rash on her "bum bum" and Charlotte absolutely refused (still traumatized by the last catheter experience I think). This time there was no saying "no," though, so we had a meltdown when all negotiation didn't work and we had to force it. The nurse maybe could have had a slightly better bedside manner but I know it absolutely had to happen.
She also needed a "pee bag" (for want of a better word) and that could have been as bad if not worse but the nurse, a different one, made sure CJ knew that it wasn't a catheter and that nothing was going inside. Once that was established, CJ was almost excited to get it on. The relief was obvious. We even got pee out of the deal.
Right about this time, I finally noticed "the look." That cancer patient look and it didn't surprise me when her bloodwork came back showing lovels down to nothing. It's amazing her blood is even red. Dracula wouldn't want her blood. She will need a transfusion.
Overall, the nurses at the HEM/ONC Clinic were great and we saw Miriam doing a little solo MT action! She let CJ play with the "hamster bells" which were very cool. Also saw Dr. Matt Bitsko (R-MC Alumn) and we chatted a bit. He had hamster bell envy.
On odd behavior: CJ got agitated over the green oxygen tank attached to the IV tower and I can't for the life of me figure out why. It took quite a bit of convincing to get her to believe it wasn't something that was going to cause her pain.
She has eaten a good bit, slept a little and is now in a very good mood. That's good.
Although it's not "fine," I'm feeling much better about this than the last. So much better, in fact, that I wanted to share a trailer for the next movie we're planning to see. I thought, at first, that it was the story of our lives. Here's a link:
http://www.youtube.com/watch?v=wsLqKAvKiQM
Hopefully, we'll only be here a couple days at most. Rachel is coming to relieve me tonight and she'll be spending the night. Then I'll be spending tomorow night. I'm sure Rachel would enjoy some company. Auntie Retta said she can come by tomorrow morning. Anyone interested in spelling her for a bit or dropping off some lunch? Call her cell to confirm and to make sure someone else hasn't jumped on it.
Side line...Heather from child life saw me and said, "I'm going to make your day." We went into her office and I was expecting a new Dora or Caillou video but it was actually a really big cardboard tube she had salvaged for me from a roll of flooring. I had asked her to save the center of the big paper rolls they use for art and she did one better. I'm going to make a rain stick out of for Rompy's Band class.
So off I go to entertain the princess.
Monday, April 6, 2009
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
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
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