Feb. 2, 2009

A sleepless night

A little calm before the storm.
We woke up at about 2:00am and worked through some pain. She was asking for mommy the whole time. Finally got back to sleep around 4:30 and slept until 8 or so.
CJ sat on my lap for breakfast and seriously wolfed down a waffle, sausage patty, and scrambled eggs. No movement so far but everyone with a stethoscope says they hear "good movement" in her belly.
Today should be a big day. The "Army Of Darkness" has decended: Speech therapist, OT, PT, myriad of other Ts. Gotta go join the fun.

Another busy night

Another very quick post before I head in to the hospital for night duty.
20K hits! Once again you all (since I got harrassed and ridiculed for saying "y'all" last time) blow my mind.
I've also seen what is, so far, my favorite card for Charlotte. The Giles family gave it to CJ and on the front is cartoon of a couple of bears hugging. Open it up and there are lots of Disney stickers and the saying,
"If I hugged you every time I thought about you...
You'd be squished!"
Thanks Samantha, Megan, and Karen. Make sure you come back next week to make your volcano erupt!

Date Night, Shout Outs

Date Night

I second Roger in apologizing for very little update yesterday. It was a very busy day all around and as mentioned, there were internet issues.
Roger and I enjoyed a wonderful "date" down in Shockoe Bottom. It was so nice to be in a non-hospital setting and talk about everything. We had a great time and a great meal. To continue the "dealing with a newborn" analogy, we defintely felt like that first time when you leave the baby with the sitter and go away for a few hours. You have that strange feeling of joy, worry, and relief all at once and you tell about a million people "call us if you need anything". Much thanks to Grandpa and Juanita for entertaining CJ and Phyllis for chauffering us around.
When we returned, Charlotte was still awake (watching videos!) and a bit whiny. she did get a new dose of morphine but it took a little while to settle down. She keeps complaining of itching at her incision site (understandable). Once she fell asleep, though, we both slept very well. I only remember waking a few times last night and almost immediately went back to sleep. She slept almost straight through till 7 am.
Awoke hungry and has already eaten almost 3 packages of graham crackers. Waiting for breakfast!! Now she's dozing again.
We look forward to our Sunday visitors. Get here before the game starts! I personally don't have a "favorite" this time so I will root for the commercials.
I am sure Monday will be a busy day. All our therapies will come to visit plus we await a visit from Dr. Khan and his crew with news about an oncology plan.
All for now...
Rachel

SHOUT OUTS!

Thanks go out to CiCi's Pizza in Glen Allen for providing us with food the other day. We have a great working relationship with them. We send them lots of customers and they make us look good when pizzas come to Birthday Bashes. Jeff and Nicole and everyone there are "da bomb."We also got another couple of meals from the Yahoo dads club (Todd I WILL call you today, I promise!) and I got to meet another dad to whom I've only talked online (The internet still amazes me).The Virginia Music Therapy Association provided some seriously good (and big) dinners all last week. You also fed some other families with loved ones on the floor. A wonderful bonus.The families of Hanover Montessori School, besides buying us a new freezer, also filled it up this week. My special ice cream cake, or what's left of it, is in there too. Thanks Horn family!The gifts keep coming in from all over and we're doing our best to keep track. It's becoming part of our therapy to go through cards, bags, boxes, etc... and keep track of who gave us what. Your generosity will be major plot point in the Lifetime move that will have to be made some day.I very much enjoyed the birthday date last night. I had the rarest of all delicacies, at least for me, lobster! Actually, the meal combined multiple favorite foods - lobster, trout, and pasta all on the same plate.We then walked around the Slip for a while and experienced a great cross section of "interesting people" who frequent entertainment/dining sections of urban downtown areas. I believe alcohol played a factor in a great deal of it. Lots of fun! I really love Richmond.One of the bigger shout outs goes to Aunt B (Becky) for coming out from New Mexico. She left for home yesterday and, I assume, got back safely. (no need to call) It was great having her here and CJ loved having her around.Hey! It's Super Bowl Sunday! Believe it or not, It keeps slipping my mind and then creeps back up and pounces on me. I'm all for the Cardinals. I want Kurt Warner to win a Super Bowl with two separate teams. I don't think a starting QB has ever done that. CJ is still going to root for the Broncos.

St. Judes?

About that St, Jude's Childrens' Hospital thing...I probably misspoke when I posted that. When we were having a meeting with the docs about possible future plans, St. Jude's came up as an option and I thought they were recommending we go there. It seemed strange but I went with it.The truth is, as wonderful as St. Jude's is, we've been getting the best treatment in the world right here and we can't see uprooting everyone and traveling far away to a place where we don't know very many people.Odds are we'll stay right here for now. I WAS looking forward to camping out at Graceland but I guess that can wait for another day.Now just watch us move to Alaska or India or something.

Going Wireless at the hospital

This update is brought to you courtesy of the brand new Eee PC which was very generously donated by yet another family. And our AT&T wireless card has come in very handy as well since the internet at the hospital is sketchy. Still getting used to the keyboard so forgive me if my spelling is worse than usual.
We had a little adventure today. Charlotte has become a victim of her own success. They have had a rash of critical admissions so they moved Charlotte down the hall to another less critical (and slightly lessroomie and comfy) room. We are lucky that it's a "private" room where all the other beds are separated by curtains. No private shower anymore. We'll all survive but the move was kind of sudden and we had to scramble to get all of CJ's gifts packed and moved. Thanks to Dad and Heather for schleping everything. We've now had two trips to take stuff home. We're getting close to our space limit for CJ gifts so although we hugely appreciate all the things filling up CJ's room, it's becoming a possibility that any gifts you bring to the hospital may be re-donated to some of the other children here. Some could really use them.
There are others here who could use your positive energy tonight: Sarah, the adrable red-haired girl has been having a rough time and on top of that, her mother had a mild stroke this morning. She's already been released so it's not life threatening but it's one more thing they didn't need. There was also a baby that "coded" as we were moving CJ to her new room. The amazing staff here at MCV brought her back pretty quickly but she's not out of the woods.
Speaking of doing things in the woods, CJ hasn't released her bowels since the last monumental event so I believe they're going to force another one. Fun fun fun! She's also still itching and they're trying to minimize the morphine.
I'm actually in the lounge waiting for the Super Bowl kick off so I'll post this for now. As Rachel said, GO COMMERCIALS!!!


Rachel needs to rest...

Tired....
I'm very, very tired so I will keep this short. What a crazy few weeks it has been. I have spent the evening playing some "catch up" at home and will be off to RnR tomorrow to keep things rolling (and romping).
I think my house is cleaner now than it has been since before the holidays (thanks, family!) I haven't cooked a meal in two weeks (thanks to SO many) and I am so grateful for all that we have been given because I know that I would not have had the strength or ability to do anything domestic with all the emotional energy I have had to procure and use. I am learning how to delegate better. Please do not be offended if you ask me what you can do to help and I say, "I don't know." I'm learning too.
The words of wisdom, strength, hope, and peace that have come to me through phone calls, emails, caring bridge messages, visits, and in so many other ways have helped us through. I think Roger and I are now addicted to this "blog"...a good thing because I think we have sucked in a few fans! This journal has become my therapy so despite my fatigue, I must complete at least one entry a day...
Yes, as Roger mentioned, we are now on the "step-down" unit of the children's floor. We are still located on the 7th floor and you will still follow similar procedures to see us/meet up with us BUT the direct phone number to the room has changed so please call our cell phones if you need to reach us. We can receive text messages fairly easily too (if that works for you). She is now in room 707. While we did not want to move, we were lucky enough to end up in a "semi-private" area of the unit and the nurses seem wonderful already. Hopefully, the next week or so will mean quick progress for Charlotte and we will get ready for the next step of the journey. I am sure that there will be more meetings with Dr. Khan (our oncologist) now that Dr. Tye is happy with how she is progressing post-op.
Her left side continues to be weak so we know PT and OT will be a part of her future. Rumor has it that there will be a speech/language evaluation too. Mommy thinks it should go fairly well (wink, wink!).
I will really sign off now. Maybe I'll actually catch the last 30 seconds of the super bowl. Sounds like it was a good game...
Rachel

IV Fun

Quite the evening. Charlotte slept for a good long while after PT came to visit. She did finish most of the chocolate milk before drifting off to sleep, though.
We had a few visitors later today including "Dr. Dan", Auntie Retta, Uncle Kolbey, and Fred & Abby.
She woke up later in the evening complaining of pain. My guess is there are some "bowel" issues as we haven't had much activity in a few days. Trying to "move things along" (so to speak). The tylenol didn't work so nurse Ann did manage to get her some morphine (God Bless her...and morphine...)

Then it was bathtime. Well..............

We lifted one of her stuffed animals up to clear off the bed and the tape latched on to the animal. Unfortunately, it pulled her IV out. Blood started going all over the bed (yikes). She really wasn't in any pain at this point but mama sure was shocked! Nurse Ann quickly put pressure on the site and got everything cleaned up BUT we had to put in a new IV in the other arm. NOT FUN!!! The nurse missed on the first try but got it the second try. Crying all the while. (CJ, not the nurse). Well, needless to say, after that she definitely needed a bath. The sponge bath cleaned her up very nicely. I think Rompy is going to need a bath too. The nurse is seeking out some H2O2 to clean him up.

After the bath, we sat her up in the chair (on my lap) to watch an episode of Caillou. Then she was ready for bed again. Sleeping soundly (snoring even...)

Time for mama to get some sleep too.
Rachel

There's Good News and Bad News (deep breath...)

Good news is that the tumor is what they call a PNET (Primative neuroectodermal tumor) which means it's operable. Malignant but operable. The "level" designation we were talking about earlier doesn't really apply to these types of masses.

The bad news is that it's in a really bad place due to what it is pushing up against. They have to go in again on Thursday and try to get as much of the rest as possible. Dr. Tye said that since the pathology report has shown him that she has a fighting chance, he wants to be much more aggressive this time (even though he's still fairly sure that he can't get it all) which means that CJ might possibly have much more serious physical deficits than with the first surgery. Fortunately, she's very young and can recover very well if not completely.

She will also probably need a shunt installed to help with drainage from the brain and a "port" of some kind implanted for the chemotherapy that is almost assuredly in her future. The shunt is completely under the skin and permanent and who knows how long the chemo port would be in. Dr. Tye wants to get another MRI done Thursday morning before the operation which will minimize the anesthesia she'll have to have. They'll put in all the hardware during surgery as well.

Then another period of recovery where she'll be evaluated and all that stuff. They may want her to go through a period of rehab before we start chemo/radiation but it kinda depends on how she is post-surgery and what type of treatment Dr. Khan wants to pursue.

While this is certainly not "good" news, it is pretty realistic with what we have been expecting. We have been warned that the process will be long from here on out. Probably year's worth of treatment and rehab. (probably at St. Jude's) We are preparing ourselves for that.

Thanks to everyone who continues to step up to the plate for us: our romp n' roll staff, the folks at the other area stores, our customers, friends, and family who have offered help wherever needed.
Charlotte continues to sleep peacefully and we will keep you updated.

Thanks to Emily Starrett for lunch today and to all the visits from our friends and family. I think cousin Jeff is bringing lunch tomorrow. His daughter, Savannah is another absolute beauty.

The big card from St. James The Less was delivered and sits nicely under the T.V.

Uncle Vance got off fine yesterday. Dad and Juanita Bonita will be coming in soon.

Babz, looks we need RNR2Go covered again Thursday if possible.

Rachel & Roger

PS She did get a sip or two of chocolate milk today! Didn't want much more than that but it's a start!

Physical Therapy

Doing physical therapy and Charlotte is being soooo brave! She's not enjoying it at all but the PT is really good and CJ is doing everything asked of her.

It's interesting to see who of the staff can get the most out of our extremely strong willed child. Dr. Tye and Nurse Joanne just came to tal about the pathology report. I'll update everything asap.

Rog

Progress and Reese

A Good day so far! She is needing less medication than expected and they actually want to fade the morphine doses now and just get by with tylenol. So far so good. She was up and out of bed, sitting in daddy's lap and watching TV. Speech came by and gave the OK for food. She is starting slowly and the NG tube will stay in for now (just in case) but she ate some graham crackers and drank some water. Very happy!

Her color and demeanor just look so much better today. She is napping right now.
We actually should get news on the pathlogy report today (this afternoon) so we are waiting anxiously for that! Let's get this ball rolling!

On a related note, we just found out that one of our Romp n' Roll families is going through a similar experience right now here at MCV. Her older daughter (she's 6) is a few weeks post-op from tumor surgery and they are getting ready to go to Kluge for rehab treatment before radiation begins. We lift Reese up in prayer as well. It is so good to make contact with these families and share stories. It's crazy how the world works sometimes.

I'll sign off for now but hope to have an update by the end of the day!
Rachel

January 25 Updates: Post-Surgery

6:47 AM, CST

A good night for Charlotte. Not so good for mommy...

She slept very well and only woke up at 4 AM when they had to draw blood. Not a fun experience but we sang some songs. The nurses did as well as they could.

The doctor did come by about 6 AM to take out the hemovac. This was draining the blood from her brain and had slowed down considerably so they just removed it. No pain at all with that and now her hat can be "off" if she wants. They are going to try to wash her hair a little today. They said the incision looks VERY good. Nice work, Dr. Tye!

On a more personal note, I ate something that didn't agree with me (not sure what) and had some stomach cramps all night. I did sleep pretty well but felt kinda on the verge of vomiting. Yay. I'm sure everyone wanted to know that. On the other hand, I think whatever it is is passing through my system and I am already starting to feel a little better this AM. The nurse was sympathetic to my plight but, of course, they can't give me anything. She did bring me some ginger ale. Nurses are so good!
On a really good note, I finally got to see LOST last night (hooray for abc.com and a fairly fast internet connection). Oh how I missed my show! Now I've just got to listen to my podcast to figure it all out! Got a few theories if you want to chat...my favorite Sawyer nickname so far: Frogurt!! :-)
We are expecting a steady stream of visitors for Charlotte today and that is great. Visiting hours are 10 AM-9 PM and you just come to the 7th floor of the main hospital. You will need to show ID and they will page me.

All for now. Charlotte still snoozing away. I am so glad she can rest!

12:53 PM, CST

Charlotte has had a busy morning!

Some very good news: They have removed the Hemovac cord (blood drain from her head), the catheter, and one more IV so she only has one IV in her hand right now which should hopefully allow her left foot to move more. We got her out of bed and sitting up in a chair with all the stuffed animals propping her up.

She had a great visit today from a therapy dog named Riley. He was a 9 year old irish setter that did tricks, licked her, and let her pet him. He also jumped up into her bed! (She was in the chair at the time).

Visits today so far from Aunt Meg, Anna and Madison, and Miss Jan. I think she's kinda tired and not saying a lot but her eyes are very expressive. She wanted to watch a lot of Dora today. All for now. Roger is now here. I'm feeling better but tired.

Rachel

6:46 PM, CST

As the day has gone on, we were blessed with many visitors. Thanks to all who came by. Charlotte has been much more quiet today and as the day has waned, she has complained more of pain. They upped her dose of morphine (she was on a really low dose) and will now give it to her on a regular schedule rather than only when she complains. It is not unusual for the pain to increase in situations like this.
At the moment, she is laughing at daddy's antics. That is good to see.

I am feeling much better. I had an extra nap today and then made a run to Target for some organizing bins (for all her goodies) and Aunt B and I got a drink at Starbucks (chai tea for me). That and an ibuprofen made all the difference in the world. I feel 100% better!

We haven't really said this yet in the journal, but we want to give an extra shout-out to Dr. Weber and all the folks at Pediatric Associates of Richmond. We are so impressed with his judgment call to send Charlotte on to the ER. With as few symptoms as she was displaying, I think it would have been very easy to dismiss our concerns and/or miss the problem. We also appreciate the fact that they continue to check on her progress. In the 3 years we have worked with this practice, we have had very good experiences, but this one "takes the cake". Thanks so much!

8:04 PM, CST

CJ has had a bath, bedding changed, fresh morphine and is enjoying a Charlotte's Web video. Auntie 'Retta and Uncle Alfred came buy with a new cool toy that kept CJ's attention for a good 20 minutes. They sang her their nite-nite song again and all was well.

Excitement on the floor...a new "admit," as they say here. Not sure of the circumstances but there were lots of police and they worked on the child for a very long time after admittance. One more add-on for everyone's various paryer lists and such. I have no name or even gender for you. Just another anonymous kid who doesn't deserve whatever happened to him/her.

10:29 PM, CST

As usual, can't sleep but CJ is out like a light.

Sorry for any/all who have tried to contact us to provide meals and services. We're having communication troubles. We're still scheduling meals and receiving meals for three or four people to freeze in the big new freezer so if you'd like to help, please call my cell..

On a very sad note, the child brought in earlier with all the police did not make it. It will probably be on the news. Another sensless, stupid shooting.

If you must have guns in the same house with children, please PLEASE keep them disassembled and locked up in separate cases with ammo in yet another location. Or better yet, don't have guns in the house with kids. This was so preventable. Hearing a woman right outside our door having to A: deal with her (I assume) baby's sudden and violent death; B: explain it to the authorities, and then; C: face the legal consequenses is not even remotely pleasant. I've not felt myself a particularly sheltered person but these last few days I'm learning so much about real life...

Please hug your children once more.