We Are HOME!

Charlotte had a great day yesterday. She was moved off the PICU to the regular peds unit (7 East) and spent most of the day entertaining herself and everyone else. By the time I got there in the mid afternoon, she was singing and just looking her adorable little self.

She has had two good sized poops in 24 hours (yay) so we are all pretty happy with the way things are moving (so to speak). She is also eating and drinking pretty well. We took her for a few walks and she was very motivated to go. In fact, we had to almost run to keep up with the IV pull coming behind her! She visited one of the playrooms to do some watercolor painting and we also had some visits from the hospital preschool teacher.

If all goes well, she should have a CT scan again sometime today (just to be sure everything is fine) and then she will go HOME. Hooray.

We still don't have official word from Dr. Khan yet about the next steps but I spoke with our nurse practitioner yesterday and she is in communication with him about where we go from here. Hopefully we should have some answers soon. I am guessing radiation will be the next step so it's just a matter of picking a date and starting talks with the radiation oncologist.

Gotta run and get ready for a busy day!

Rachel


Update: We are HOME!

She had a good night and we FINALLY got a CT scan at about 3 PM. Dr. Tye had basically given the clearance to go home before then but they had to do the CT just to be sure.

In the meantime, she had a productive afternoon that included a visit from Ms. Nodra, the Pre-K teacher on the unit. Ms. Nodra has had a chance to really get to know Charotte over the past few months so she brought some great activities. In about 45 minutes, Charlotte worked on letter sounds, letter names, puzzles, counting, writing (numbers and letters) and a few other great skills. It was good exercise for her brain.

We came home to a welcome home dinner over at Granny Dot's and now it's storming like crazy (yay for rain). Oh, she also called Gramps in Florida to wish him a Happy Birthday!

Grandpa and Grandma Bonita leave tomorrow to go back to TN. MUCH MUCH MUCH thanks to them for all the help this past week. We couldn't have done everything we've done without them.

We will go by Qdoba tomorrow to pick up our fundraising check from Lisa. No word on the final total but we are excited. Speaking of which, they are doing ANOTHER fundraiser at the Willow Lawn store tomorrow for an organization called Noah's Children. There is no burrito contest but it is another "portion of the proceeds for every meal goes to the organization" deal. If you are in the Willow Lawn area tomorrow, please come out to support them. They are a great restaurant with good food and they do a lot of good work for the community. I think the fundraiser is basically all day.

My good friend (make that GREAT friend) Amy will be flying in from Ohio on Friday to help us for a few days. Then Aunt Phyllis will come for a turn. It will be a busy few days with the Strawberry Faire on Saturday and a Southern Horizon gig for Roger. Not to mention our normal busy stuff. Hoping to make it to the church picnic Sunday too. We shall see!!

It will be nice to be home for a bit. I hope we hear from Oncology in the next few days with some answers.

Signing off...
Rachel

A Lot of Adventure

Well, we've had a lot of adventure since the last post. After she got settled, she was talking up a storm but then she started some erratic behavior. Her tongue kept protruding out of her mouth and she was making some very jerky movements. It was difficult to keep her still and she kept trying to pull out her lines going straight into her head (!!!). They gave her some benadryl and morphine with no results and then took her down for a head CT just to check for no additional internal bleeding. The CT scan looked clear. Finally about 9 PM they decided to try Atavan and that gave almost immediate results. She was much calmer although she was still talking with her tongue out of her mouth and wiggling all over the place.

The short story is: she hasn't slept (at all) since waking up from the surgery about 4 PM yesterday and she is definitely not talking as much. At one point, the neurosurgeon was thinking she was having seizures but the neurologist thinks it's probably more just swelling and the combination of meds. They had her on a different anti-seizure med than they used during the last two surgeries so they have since changed back to the original med. We are just in a waiting game. Her BP was a little elevated and she got some blood last night but otherwise her levels seem ok with everything.

I got very little sleep last night (some but in fits and spurts). The most I got was from about 6-8 this morning. We've had visits from Auntie Retta and Grandpa and Juanita are here now. I'll be going to work in a little bit. Yay for caffeine.

So to make a long story short, we just keep monitoring everything and make sure there aren't any erratic changes in the next little while. As the swelling goes down, we should see her return to a more "normal" level of everything.

She will have a full head and spine MRI tomorrow morning so we'll get lots more information then.

Now time to seek out some food for me...

Rachel

UPDATE:
After almost 21 hours of wakefulness and restlessness, Charlotte finally fell asleep about 1 PM. Dr. Tye had been by to see her and concurred that she probably was not having seizures but was more likely just feeling the effects of surgery, medication, etc. He was happy with her blood pressure and how she looked and just advised us to "hang in there".

I went home to refresh before work and managed to get in an hour or so nap on our new (and much needed) mattress. Hooray!

Then I met up with Roger at Romp n' Roll and took over the evening shift while he headed up to N. Va for an Uptown Gig. The work allowed me to at least clear my head a little and get some much-needed paperwork done.

Now back at the hospital and it seems that she has been asleep the ENTIRE time. Of course, I joked with my in-laws, "oh, so you kept her asleep so now she can be awake all night" but I have a feeling she will sleep for a while longer. Her BP level is great and everything else looks good. She has been resting peacefully. Of course she hasn't eaten much so I'm sure that she will wake up HUNGRY. Hopefully she will either wake up briefly before midnite and be able to eat a little or she'll just sleep straight on through till her MRI tomorrow. Tomorrow is a full head and spine MRI with and without contrast. She hasn't had one like this since her initial diagnosis. They will be checking her up and down (literally) for any signs of the tumor spreading as well as getting an idea of what we have left to fight.

More to report later. For now, I am going to seize the opportunity to get some rest.

Rachel