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
Showing posts with label antibiotics. Show all posts
Showing posts with label antibiotics. Show all posts
Friday, April 24, 2009
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
Wednesday, April 22, 2009
Update from the Hospital
Well thanks to your HUGE response, the survey we created closed automatically (the free survey option closes at 100 responses). So if you would still like to complete the survey, we created a new version (same questions). Go HERE to complete the survey if you haven't already. As mentioned before, we know that not everyone will be able to participate in this but for those who can and want to, we would like to get feedback as to how you would participate. We just want to have a way to celebrate the end of Charlotte's treatments and will include anyone who is interested.
Not much update from the hospital and no time for a longer update so we will have to write more later. I hope no news is "better" news.
Rachel
Mom on duty!
I'm here in the hospital and she seems to be doing pretty well. She hasn't had any fevers for a while so that is good. Still getting loaded up with antibiotics, antifungals, anti-everything. I don't know if Roger mentioned this in the last post, but she had a visit from a pediatric gynecologist (yes, indeed, there is such a thing!) to check out her "bum-bum". [And for those of you who may be confused, bum-bum is Charlotte's word for vagina...not bottom] Anyway, they were concerned because the rash/skin breakdown was similar to that seen in flesh-eating bacteria which, while rare, can happen with kids who have low counts and neutropenic fevers. So far so good and we just continue to monitor everything for changes.
Otherwise, I understand that she has taken lots of walks today and she's eating a good bit (especially they pretzel and cheddar goldfish I brought which seem to be a new favorite).
Roger's dad is coming in from Tennessee today (yay) to help us out. That is a blessing! I think that will help with a lot of our coverage issues. If all goes according to plan, we will ride this out until next week and get ready for the process to start all over again. My mom is planning to be back here on or around April 30th.
That's all I have to report. It was a busy day at romp n' roll getting prepared for summer registration next week and teaching classes. Now it's Roger's turn...
Rachel
Not much update from the hospital and no time for a longer update so we will have to write more later. I hope no news is "better" news.
Rachel
Mom on duty!
I'm here in the hospital and she seems to be doing pretty well. She hasn't had any fevers for a while so that is good. Still getting loaded up with antibiotics, antifungals, anti-everything. I don't know if Roger mentioned this in the last post, but she had a visit from a pediatric gynecologist (yes, indeed, there is such a thing!) to check out her "bum-bum". [And for those of you who may be confused, bum-bum is Charlotte's word for vagina...not bottom] Anyway, they were concerned because the rash/skin breakdown was similar to that seen in flesh-eating bacteria which, while rare, can happen with kids who have low counts and neutropenic fevers. So far so good and we just continue to monitor everything for changes.
Otherwise, I understand that she has taken lots of walks today and she's eating a good bit (especially they pretzel and cheddar goldfish I brought which seem to be a new favorite).
Roger's dad is coming in from Tennessee today (yay) to help us out. That is a blessing! I think that will help with a lot of our coverage issues. If all goes according to plan, we will ride this out until next week and get ready for the process to start all over again. My mom is planning to be back here on or around April 30th.
That's all I have to report. It was a busy day at romp n' roll getting prepared for summer registration next week and teaching classes. Now it's Roger's turn...
Rachel
Friday, April 17, 2009
It was a Decent Night
It was a decent night. Charlotte is still spiking a fever and the Tylenol seems to keep it "artificially" at bay for a while. Then it goes up again. It's been as high as 103! She also keeps complaining that her "bum bum" is hurting and the area is very red. Nurse Nicky made up some special "booty paste" that is even better than the sensicare cream and that seems to help a little. My guess is a UTI but they're waiting on cultures to come back. Also, her latest blood counts were even lower. I guess yesterday, they were low but not quite low enough for platelet or blood transfusion. Today they were VERY low so she is getting a blood transfusion right now. She slept ok considering all of this and I got a few hours of shut-eye too. Now she's watching Sesame Street and drinking some water. Yay!
At least we are back on 7 East this time. It's so much quieter here and it's nice to be with a crew of nurses who really seem to know how to work with younger kids and really know how to interact with Charlotte. Such a difference!
I actually gave myself a "home manicure" last night. I had a fabulous coupon from Bath & Body Works and treated myself to some good stuff, including a manicure kit. Then it was off to CVS for buy 1 get 1 free nail polish. Can't beat it. I offered to paint Charlotte's nails but apparently that's only Miss Heather's job.
It seems that Auntie Retta and our friend Lauren will both be stopping by for a visit today. We will definitely be here through tonight and, of course, we just take it one day at a time. The view from the room is beautiful so I hope everyone enjoys the day!
I realized last night that we (meaning Charlotte) has spent more nights IN the hospital than OUT since January 20th. We've actually been in the hospital over 45 days and out for only 40. And during about half of those 40 days, we have been to clinic or therapy....quite a life!
Well, my tummy is grumbling so I need to round up some breakfast...
Rachel
Overall, it's been a very exhausting but OK day here at Camp MCV. The highlights:
She keeps getting a fever although it is taking longer for her temp to go back up each time after the tylenol. That should be a good sign but it's still frustrating that she's still having fevers.
She is on heavy duty antibiotics and she had her last dose of Vincristine for this cycle today. No poop yet today but we're definitely hoping for one. She's due. Her "bum bum" is still very irritated and we had the doctors take a peek just to make sure we don't need to be more concerned. Right now we are just watching it and slathering with cream. Her cultures have not come back with anything positive and her counts are a little better since the transfusion. They just took more blood/cultures this afternoon.
Her appetite has been very hit or miss all day. Not eating much at all. Her color is better since the transfusion but it seems more hair is falling out. We've been noticing the eyebrows and eyelashes thinning out a lot this round. It really stinks when the lashes get stuck in her eyes. Frustrates her a lot.
Thanks to Auntie Retta for coming to visit for a while as well as Lauren (one of our Romp n' Roll buddies) for bringing mommy lunch. Sweet potato chips....yum....We also got to chat about LOST for a bit. One of my favorite activities ever these days.
She has been quite the couch potato today despite everyone's best efforts to get her up and moving. We did go to the playroom one time and she got up to walk and ride in the wagon. Besides that, we've been coloring, watching movies, and reading books. She's also talking everyone's ear off. I guess she comes by it naturally. I, on the other hand, at least got some activity by going downstairs a few times and taking the STAIRS up on the way back. Seven flights up each time. My only exercise for the day so I'll take what I can get.
So now I'm just counting the minutes until Roger gets here. Should be relatively soon. Then changing of the guard and home to a full day of Romp n' Roll tomorrow. It seems based on everything going on that we will probably be here through Sunday.
A happy birthday to Ian. We are sorry to miss his party tomorrow, especially with the weather as it is.
Oh! A big plug for Megan Blake. Many of you know her from pics of our head shaving party. She's the fabulous woman who gave Charlotte her Bald Chicks Rock t-shirt. She also has her own Caring Bridge page and posts frequently in our Guestbook. Anyway, she was nominated for Supermom of the Year on Richmondmoms.com and totally deserves to win. Please go HERE to vote for her. You don't have to live in the Richmond area to vote for her. She gets a fabulous prize package (including stuff from Romp n' Roll!!) We have a great network here on Caring Bridge so I think if everyone who follows our page votes for her (and get some of YOUR friends to vote for her as well) she has a great chance!!
That's all I have to say for now.
Rachel
It's amazing the effect music has on some people.
We have been playing music for Charlotte since before she was born (surprize!). She was listening to Miles Davis "Kind Of Blue" in utero.
Throughout the tumor journey, we've been trying to keep music going most of the time one way or another whether it's a CD, videos, or me playing Frosty and Battle Cry Of Freedom on the "kitar." Just lately, though, we just haven't had as much straight music going and I wanted to remedy that. I also wanted to play something "normal" for her and in my experiments, I've found two ladies who have captured the ear of the princess.
One is Maggie Drennon (http://www.maggiedrennon.com/). I think she's only OK but we were listening to her CD on my iPod the other day and CJ got quite irate when I wouldn't repeat one of the songs for her.
Another singer with whom CJ has fallen in love, and the best example of "huh?", is Angelique Kidjo, an African pop singer with a seriously edgy voice who can sing intensly rhythmic tunes and beautiful ballads equally well. I played it for her the other day telling her it was her "Happy Music" and she just loved it! Tonight I put on a Kidjo CD and the effect was almost immediate. She settled down and went right to sleep and it wasn't during a slow, soft song either. It was during one of those intense, rhythmically driving songs.
So she's asleep and I thank Angelique Kidjo (http://www.kidjo.com/).
Both Mommy and Daddy are pretty worn out. I had a full day of absolutely WILD classes at Romp n' Roll along with a very fun Birthday Bash. I think there are pics and videos of today's events on Facebook. Lots of fun!
Well, as usual, it has taken me a very long time to get this done and I now need to sleep. See you all in the morning.
zzzzzzzzZZZZZZZzzzzzzzzz!!!
At least we are back on 7 East this time. It's so much quieter here and it's nice to be with a crew of nurses who really seem to know how to work with younger kids and really know how to interact with Charlotte. Such a difference!
I actually gave myself a "home manicure" last night. I had a fabulous coupon from Bath & Body Works and treated myself to some good stuff, including a manicure kit. Then it was off to CVS for buy 1 get 1 free nail polish. Can't beat it. I offered to paint Charlotte's nails but apparently that's only Miss Heather's job.
It seems that Auntie Retta and our friend Lauren will both be stopping by for a visit today. We will definitely be here through tonight and, of course, we just take it one day at a time. The view from the room is beautiful so I hope everyone enjoys the day!
I realized last night that we (meaning Charlotte) has spent more nights IN the hospital than OUT since January 20th. We've actually been in the hospital over 45 days and out for only 40. And during about half of those 40 days, we have been to clinic or therapy....quite a life!
Well, my tummy is grumbling so I need to round up some breakfast...
Rachel
Overall, it's been a very exhausting but OK day here at Camp MCV. The highlights:
She keeps getting a fever although it is taking longer for her temp to go back up each time after the tylenol. That should be a good sign but it's still frustrating that she's still having fevers.
She is on heavy duty antibiotics and she had her last dose of Vincristine for this cycle today. No poop yet today but we're definitely hoping for one. She's due. Her "bum bum" is still very irritated and we had the doctors take a peek just to make sure we don't need to be more concerned. Right now we are just watching it and slathering with cream. Her cultures have not come back with anything positive and her counts are a little better since the transfusion. They just took more blood/cultures this afternoon.
Her appetite has been very hit or miss all day. Not eating much at all. Her color is better since the transfusion but it seems more hair is falling out. We've been noticing the eyebrows and eyelashes thinning out a lot this round. It really stinks when the lashes get stuck in her eyes. Frustrates her a lot.
Thanks to Auntie Retta for coming to visit for a while as well as Lauren (one of our Romp n' Roll buddies) for bringing mommy lunch. Sweet potato chips....yum....We also got to chat about LOST for a bit. One of my favorite activities ever these days.
She has been quite the couch potato today despite everyone's best efforts to get her up and moving. We did go to the playroom one time and she got up to walk and ride in the wagon. Besides that, we've been coloring, watching movies, and reading books. She's also talking everyone's ear off. I guess she comes by it naturally. I, on the other hand, at least got some activity by going downstairs a few times and taking the STAIRS up on the way back. Seven flights up each time. My only exercise for the day so I'll take what I can get.
So now I'm just counting the minutes until Roger gets here. Should be relatively soon. Then changing of the guard and home to a full day of Romp n' Roll tomorrow. It seems based on everything going on that we will probably be here through Sunday.
A happy birthday to Ian. We are sorry to miss his party tomorrow, especially with the weather as it is.
Oh! A big plug for Megan Blake. Many of you know her from pics of our head shaving party. She's the fabulous woman who gave Charlotte her Bald Chicks Rock t-shirt. She also has her own Caring Bridge page and posts frequently in our Guestbook. Anyway, she was nominated for Supermom of the Year on Richmondmoms.com and totally deserves to win. Please go HERE to vote for her. You don't have to live in the Richmond area to vote for her. She gets a fabulous prize package (including stuff from Romp n' Roll!!) We have a great network here on Caring Bridge so I think if everyone who follows our page votes for her (and get some of YOUR friends to vote for her as well) she has a great chance!!
That's all I have to say for now.
Rachel
It's amazing the effect music has on some people.
We have been playing music for Charlotte since before she was born (surprize!). She was listening to Miles Davis "Kind Of Blue" in utero.
Throughout the tumor journey, we've been trying to keep music going most of the time one way or another whether it's a CD, videos, or me playing Frosty and Battle Cry Of Freedom on the "kitar." Just lately, though, we just haven't had as much straight music going and I wanted to remedy that. I also wanted to play something "normal" for her and in my experiments, I've found two ladies who have captured the ear of the princess.
One is Maggie Drennon (http://www.maggiedrennon.com/). I think she's only OK but we were listening to her CD on my iPod the other day and CJ got quite irate when I wouldn't repeat one of the songs for her.
Another singer with whom CJ has fallen in love, and the best example of "huh?", is Angelique Kidjo, an African pop singer with a seriously edgy voice who can sing intensly rhythmic tunes and beautiful ballads equally well. I played it for her the other day telling her it was her "Happy Music" and she just loved it! Tonight I put on a Kidjo CD and the effect was almost immediate. She settled down and went right to sleep and it wasn't during a slow, soft song either. It was during one of those intense, rhythmically driving songs.
So she's asleep and I thank Angelique Kidjo (http://www.kidjo.com/).
Both Mommy and Daddy are pretty worn out. I had a full day of absolutely WILD classes at Romp n' Roll along with a very fun Birthday Bash. I think there are pics and videos of today's events on Facebook. Lots of fun!
Well, as usual, it has taken me a very long time to get this done and I now need to sleep. See you all in the morning.
zzzzzzzzZZZZZZZzzzzzzzzz!!!
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