It has been an up and down day. She slept fairly well and we spent most of the morning watching DVDs, reading books, and making our "rounds" both inside the hospital and out on the play deck. Taking the morning meds (oral) was still a battle. No pooping yet but I have heard a few toots.
Our best part of the day came around 3 PM when Charlotte got a special visitor: ELMO! One of our Romp n' Roll families (the Murphys) have an Elmo costume leftover from their daughter's birthday party and they stopped by to visit with an Elmo balloon as well (pics to follow). Charlotte seemed to enjoy Elmo's antics although she was a little reticent about hugs. She did talk to Elmo a lot about all his Sesame Street friends as well as her friend Dora. Then Elmo even got to visit with a few other kids on the unit. Thanks so much to the Murphy family! You really brightened her day...
Then we went to "Sunday School" and Charlotte made a butterfly, got a puzzle, and heard a few stories. The event was enjoyable enough but I just had to laugh at the concept of trying to share heaven/hell theology with a bunch of preschoolers. We were treated to a good ol' Bible tract and the concept that "There are only two places to go when you die: Heaven or to live in the fiery pit". [This is LITERALLY what the woman said to these kids]. I don't think Charlotte or any of the other kids (all but one were under the age of 5) really got that... The person sharing the experience was nice enough but as she was telling Bible stories, she kept saying things like, "Remember the time that Jesus was crucified and all the priests in the temple were against him?" Her "verbage" was not really for the pre-K set and I found it amusing that she would even consider the fact that these kids would "remember' theses stories, let alone have heard them before.
Anyway, I digress. Charlotte had a good enough time and that's all that matters...
At the moment I am trying to wipe "sauce" off of the cheese and bread that makes up the pizza. Apparently the cheese and bread are good; just not the sauce in between. And then when I wipe off the sauce it's "too soggy". We really need a grilled cheese option on the culinary menu (sadly there is none).
So here is the really bad news of the day: we were returning from Sunday School and had just stopped at the nurses station since her line was beeping and she needed a new flush of Leucovorin. Her nurse checked the line and sent us on our way. I got us back to the room, proceeded to lift her out of the stroller, and her line went in the other direction. Yes, Ladies and Gentlemen, her Central Line literally fell OUT of her chest!
Fortunately, I didn't panic and Charlotte hardly reacted at all. I asked her if her chest hurt and she said "not anymore". I called the nurses and they all came in and looked at it...shocked, to say the least. Also on a good note, it didn't bleed as some central lines do when they are "unplugged". My personal theory is that her body has rejected the line (rather than accepting it and forming scar tissue on the inside to hold it in) and it just kinda pushed itself out. That would explain the lack of blood.
So the ped on call said that we probably can't get surgery done to repair the line until tomorrow (apparently surgeons ascribe to the don't-work-on-Sunday motto that Chick-Fil-A and Ukrops ascribes to as well...except in cases of extreme emergency...which this isn't). BUT we have to keep fluids pumping through her to flush the methotrexate AND she still has to get some of the Leucovorin SOOOOO....the nurses had the extreme pleasure of putting an IV in her left arm. Plus we will need to get blood draws at 3 AM to check all her levels. More fun. It was not a pleasant experience but the nurses were (of course) awesome and got her IV in on the first stick. Hallelujah.
Just another bump in the road. But it still sucks.
I feel like lately, all the "little" bumps in the road are magnified. When you're driving down the road in a 2009 Cadillac Escalade (Hybrid, of course), it's smooth sailing and even if you hit a pothole, you can keep cruising along OK. But we're riding in a beat-up 1978 Chevy Nova with a rebuilt transmission, 200K miles, and we're barely passing inspection. We feel EVERY little bump in the road and we're on a cross country trip. So lately even the littlest thing (something that in the grand scheme of things is probably not that important and certainly not high priority) can upset me and ruin my day/week/month/life.
Charlotte has developed a few "odd" behaviors and sayings in the last few days. One is that she now LOVES the lemon cleaning wipe that comes with the silverware on every food tray. She has to clean her hands and face after every meal with it. The other is that she has said a few things like, "Kittens don't die" when looking at a picture of kittens. When I ask her about it she expands, "Kittens don't die because they're babies." Not sure where this stream of logic comes from or why she's suddenly obsessed with it butI find it fascinating. She really has such an interesting perspective on the world.
So daddy is on his way here and I'm very happy to give up the reins for the evening. Please pray for a quick fix to this central line mess as well as a quick flushing of this methotrexate from her system so we can get on with the rest of the chemo.
Update from Roger:
Please join me in wishing strength to the Porterfield family as they mourn the passing of their little girl, Leah. We met them the second time we came to the hospital. Leah was admitted after they were involved in a car accident.
I'm not sure if you can view their website but here's a link...
Love to all,