Well, let me start off by saying that Charli's port was successfully removed!!
Now that I have said that and put any fears aside, let me tell you about our day. Wow, today was probably one of the hardest we have had...at leaset it seems that way now.
We got up and on the road as scheduled, no problem. Charli didn't sleep much on the way down, which didn't surprise me a ton. She is big into watching out the windows now, so she gets wrapped up in that and forgets that it is too early to be up! We arrived at Children's at 7:00 on schedule and things proceeded as normal! Charli was taken back for her CT/surgery shortly after 9:00am.
At 10:15 the surgeon came in and confirmed that the CT report was favorable. Charli's tumor has shown no change. He was on his way to remove the port. In the beginning we were expecting her to be done around that time, so I was a bit surprised. No biggie though. Around 11:00 he came back and and told us that she was done and that everything went well...no problems! She could be a bit sore, but nothing too terribly bad.
At 11:30 Charli arrives in the CARES room. She was a bit shaken up you could tell, but she just had surgery so it was expected. She was very concerned with the oxygen monitor on her finger. In fact, when she woke up the first thing she did was hold up her finger and say "uh-oh" and she discovered the foreign object on her hand! I rocked her and loved on her while she drank a glass of juice.
A few minutes later she started to get very fussy. I tried moving positions, standing up, etc. We moved the oxygen monitor and took the blood pressure cuff off, as she tends to be very annoyed by them. I should also mention that when they brought her back in the room, she was very cold - with a temperature of around 95.6 or so.
She was getting more agitated as the seconds went on, and we noticed that her lips were turning blueish, her oxygen was dropping...but I assumed it was because she was crying so hard. Soon enough her oxygen level dropped to 50 (should be at 100) and she was cold as ice, lips were silver/blue, and her skin was just a dusty grayish color - hard to explain. Looking back on it, I should have been very scared. After a minute or two of receiving oxygen her color came back to normal and the oxygen level raised back to normal as well. However, the fits and the crying were just beginning.
Charli was like a child I have never seen before. Keep in mind that this behavior went on for a good 30 minutes, taking Chad, a nurse, and myself to truly keep her from harming herself. She was grabbing handfuls of my hair and yanking them...pulling chunks of hair out (it hurts now!), scratching herself and us, hitting, pinching, pulling, and moving all over. She would thrust her back and yank her head all the way back as her eyes would roll back and she would just scream. There was nothing we could do. We both tried holding her, we tried offering her a drink, cartoons, toys...nothing worked. Finally, I think she just tuckered herself out. Now that I think of it, it was like she was possessed. I didn't have a lot of time to truly think about it at the time, which is good because I would have lost it. She was like nothing I had ever seen before, and if I didn't see it with my own eyes - I would NEVER believe it. We were told that it happened because of a reaction to some medication. After she woke up from her 30-45 minute nap she was completely back to normal. I would never want to experience this again, by far the hardest thing to see. If this would have happened on our first visit...I don't know what I would have done. Luckily for us, we were a bit "seasoned" to watching Charli "suffer", as sad as that is to say.
But, after it is all said and done - she is doing well. We will not use the medication used today, so we should never have to worry about this happening again. THANK GOD, not sure any of us could handle it. Her face is all scratched up. Chad, a strong-grown man could not even hold her alone, it was just terrible.
When she did wake up and was feeling better the nurse said it was time to take the IV out, at that time Charli perked up and said "uh-oh" like she knew it wouldn't be fun! But, she didn't know the difference!!
We discussed the option of removing the remaining tumor, and it was suggested that unless there is a relapse or direct pain associated because of it...it would be best to just leave it as is. We will go back in three months for a follow-up CT as usual.
We left at 1:20 and came home! She ate and drank well tonight, and played just like normal! Grandma and Grandpa Borg came down and she did a lot of showing off for them, which they loved of course! We didn't give her any pain medication, she is truly the toughest person I know! She had surgery today...and no pain meds. I take pain meds for such silly things in comparison.
Thank you for all the phone calls, emails, prayers, and well-wishes. What a great way to start '08, and the start of a new chapter in life for Miss Charli. Although today was a tough day for us, it is a day to rejoice. The "freedom" we are able to feel after today compares to nothing I can think of. Knowing that cancer will never be far from our mind, and it never should be, but knowing that it is not attacking our daughter anymore...there is nothing I can say that is better than that.
It is late, and I am tired - so I am going to go now. I am sure there is more I should say and more I want to say, but will post it later this weekend. Thank you to everyone, you really have no idea what all of you mean to us.
PS. A BIG hi goes out to Julie and Vicki from Children's!!! It is so GREAT to have your faces there to greet us when we arrive for these types of things. And, having your familiar faces care for our baby when we are not able to, means the world to us! You do a great job, and we want you to know that you are appreciated and thought of often!