Movements and fevers

First post of the day

NOT having a good night (again). WARNING: DO NOT READ BEFORE OR IMMEDIATELY AFTER BREAKFAST...
She went to sleep around 10:30/11 after eating a LOT of food. By special request, she had chick-fil-a french fries, chocolate ice cream, and some apple juice. She had a nice bath and settled down for some movies, including Monsters, Inc. and Lion King 1 1/2.
Around midnight, I was up and she was complaining that her tummy hurt. I asked her if she needed to throw up but she said no. Her belly felt warm. Otherwise she was ok and fell back to sleep.
The fun began about 3:30 AM. I heard some coughing and thought maybe she needed some water. I woke up to find her covered in vomit, most of the food pretty undigested from earlier. All the nurses came in and we got her cleaned up. Then she vomited some more. Got her back in bed with an order for zofran and they were going to monitor her. Less than 15 minutes later, she vomited again. Her belly is VERY warm and we are thinking (hoping) this is mostly GI and a result of not pooping everything out. There might be some kind of blockage keeping everything from going in the right direction. They are probably going to order an x-ray as well as another enema to flush everything out (if they can).
Sigh...no sleep for mama again...
I hate to see her like this. Will update more in a bit.

Fever concerns

The interns were kept at bay for a little while. She awoke at about 6 am and felt really warm so I called the nurse in to take her temp. Fever of 101. She said that she was holding the interns back. It cracks me up. The intern said she needed to "see her patient and check her breathing". I wonder if she missed the lesson on how patients are hooked up to telemetry so you can monitor their breathing, heart rate, and pulse. She's sleeping and her mom is in the room monitoring her progress. Give me a break! How many medical students does it take to check a patient's vitals in a 2 hour period? (Apparently more than I ever imagined).
I understand it is a teaching hospital and I love the fact that it is. I hope these students are learning a lot from Charlotte's condition and situation. I just don't understand the lack of efficiency in all of it. Do they think they are "cheating" if they all come in together to do their checks rather than coming separately and all finding the same information? I also understand that we can say "no" to the med students. At this point, I either have not had much energy to pursue that or I fear I will just be really rude and B*$%chy (sorry for the slur) and I'm trying not to go down that road...
After Nurse Princess left, the doctors saw their "in" and descended in due order around 7:30/8. She has been sleepy all morning and I have done my best to minimize any intrusion on her rest. The overall concern now is infection. Her left side also seems much weaker which could be a combination of the infection or other factors. Dr. Tye wants to do another CT scan and figure out if she may need a shunt after all. They may do another lumbar puncture under general anasthesia too. It also looks like her central line may now be infected as the area around her line is getting red.
Did I mention that it has not been a good day so far?
She did try to get up and eat. Ate a cup of applesauce and two bites of pancake and then wanted to go back to sleep.
I am WAY over staying at Hotel MCV. Today marks three weeks that we have been on this journey. The way things are going, I anticipate that we might actually be here a whole month before all is said and done. And this is really just our first "tour of duty". I totally understand why they need to keep her here and appreciate this situation more than going home and then having to come back, but it still sucks. No other way to put it.
I'm off to seek out coffee...

More news of fever

And now your moment of Zen...
A moment of peace in what has been a blustery day. The day really did zoom by and I can't believe it's already 4:30 PM. As bad as it's been, I guess it's good it went by fast.
Charlotte's preschool teacher here at the hospital (Ms. Rasberry) and the art therapist stopped by earlier in the day to check in on her. As she was "out of it" with the fever, they offered to take care of mom and brought me a yummy coffee. So sweet! (and so needed!)
Charlotte's fever spiked at about 102 degrees sometime before noon. They told us early on that they are trying to determine the source and specific type of infection. She is now on a stronger antibiotic until they can determine the specific cause. Blood and urine samples have been collected and cultures are being done as we speak. She went down for the head CT and no official news but they did let her eat again until midnight so I guess that means that if they are going to have to do any kind of surgery, it will be tomorrow.
She slept for most of the morning and then once the fever broke, she was alert and talking. She worked very hard in PT today and Shaaron continues to be impressed with her performance and progress (through the tears!).
We got our application for our handicapped parking permit. Yay! Who wants to ride with us to Disney World? The outlet malls? Sports Arenas? We get dibs on the good parking spots!
Thanks to everyone for the moral support during this "setback". Yes, it feels like a step backwards and I sometimes feel my mental health fading but we are (in general) standing strong on the shoulders of EVERYONE's prayers, words of comfort, and help.
More news as we know it.
Rachel

A very long day

What a lovely end to a crappy day. She slept and slept and slept. I tried to rouse her around 6 PM to eat something and she just kept slipping back to sleep. What's that rule about sleeping babies??Anyway, around 7 PM I figured I needed to get her up for 2 reasons: if she was going to be NPO after midnight, I needed to get some food in her tummy AND I didn't want Roger to be up all night with a well-rested child. (You're welcome, honey!). I finally got her up and while her appetite was not as RAVING as it has once been, she did eat some peaches, a little spaghetti and broccoli, and some chocolate pudding (yum). One of the neuro docs came in to check on her while we watched Jeopardy and he even evoked a laugh in her. You can tell he has young kids at home himself. THEN Auntie Retta arrived and as usual, there was the godmother/goddaughter exchange of the "knowing looks", thoughtful smiles, and a few giggles. They have such a sweet and special bond and I am so happy for that! THEN, just as we were getting miss princess back into bed, Daddy arrived. Then the real fun began. We started talking, sharing stories, experimenting with play-doh, and singing funny songs and the antics between mom, dad, and auntie Retta had miss Charlotte in fits of giggles. It was so great! Our current "monkey trick" is that we are trying to teach Charlotte to say a certain phrase in response to any doctor's questions: "Look it up in my chart!". Our other new mantra is: "I expect to be home by Sunday!" I also think it would be great for Charlotte to learn how to execute the "pull my finger" trick for every time the docs ask her to squeeze their fingers (part of their neuro checks). Hey, if we're going to be stuck in the hospital, we might as well work on her show business act and comedic timing. My current hypothesis is that much of her pain in the past week has been GI-related. Now that she has emptied herself and had a full day of rest, I think she is well on the mend. She had NO pain medication from 8 AM this morning until after I left and very little complaint of head pain. While there may be some kind of infection lurking in her, I am hoping that she will prove to be the quick healer that she normally is from infectious type things and fight, fight, fight. Hopefully her port will be able to come "clean" as well. Let's all focus our positive thoughts in a weekend release (or sooner???) and mom and dad will be MOST happy.On another note, I am continually touched by the kindness, thoughtfulness and poignancy of Charlotte's peers. Children are so spiritually minded...I think it is just a natural state of being for them. And I'm not even talking about religion, per se, but a heightened sense of that greater Spirit that envelops us, guides us, and protects us. It hearkens to mind the Biblical allusions where we are called to come to God "like a child". Perhaps if we all looked at our life situations through the eyes of children we would find greater strength, peace, and understanding. Children trust inherently that their caretakers will provide for their every need. They trust in the wisdom of their parents as omniscient beings (at least until they become tweenagers) and they instinctively know that their parents will protect them in times of danger. I think as grown-ups, it is so much easier to let the cynicism and hard realities of life create negative energy. We forget to trust God, especially when it matters most. Most children, on the other hand, are just naturally positive. Maybe that's what keeps me going these days. I certainly feed off that energy when I'm at Romp n' Roll or get to see Charlotte's other friends.Ok, I have waxed poetic quite enough for one day. I will close and run off to bed...Rachel

Roger's post

Dad on the nightwatch, here. Charlotte did complain a little about her head hurting but it was pretty minor and she was so tired, I just distracted her with stuffed animals, the nurses gave her a bath, and now she's out. After the difficulties I know Rachel went though, I feel I'm getting off pretty light. It was so nice to see and hear CJ laugh tonight. We filmed a little of it. I'll download sometime this century.
Need to take advantage of the princess snoring.
Nighty-night