WEAR MY SHIRTS TOMORROW!

Tomorrow is my transplant day, 4/23/08. I'm gonna make a new big poster and I'm gonna watercolor it. On my transplant day! And I'm gonna be in the same room like now on my transplant day! My sister is my donor and that means part of her bone marrow is gonna go inside my body and the bone marrow is if you have seen a dog chewing on a bone and you see the red stuff inside the bone and the red stuff is the bone marrow. My sister's gonna come tonight and her harvest is gonna be early in the morning to get just part of her bone marrow. Enough bone marrow inside her body for her to live still.

If you have a superstar shirt, wear that on the transplant day. If you don't have a superstar shirt, at least wear a blue shirt. Bye, bye! See you later!

surgery yesterday

I got a PICC line yesterday, 4/21. A PICC line is a tube going inside you and you have a bandage on it. That tube goes into a big vein. It starts to your arm and it goes to your body. It's the vein that's inside your arm and there's lots of veins connected to it, little veins of course, and then it goes to your heart. My Broviac got taken out and it got taken out 'cause it had an infection and if you are wondering when it got put in, my mom will tell you right now. [Tuesday, 4/15--stinkin' thing didn't last long!] At my surgery, nurses were nice. When they gived me the medicine out in the hall and they put me in the surgery room I got dizzy 'cause they give me the sleepy medicine.

using the it-could-be-worse trick

It's a favorite little mental game of mine. Certainly it helped me feel better in the light of day. The dark of last night and the midnight surgeon (residents, I'm sure) visits left me heartsick and using tissues in the parent's lounge. This photo is really a good summary of our day. Calm and good in many ways: phone calls from darling friends, quiet crafting and stories, and the first food Marian was interested in eating since we arrived (potato chips and ketchup, of course!). She was feeling good enough to be this goofy...but you may also notice her sweet hand carefully held to her central line. It was sore for longer than it should have been, and, sure enough, is infected. The discharge-and-redness signs finally showed up last night, and she's on antibiotics to slow it, but the line has to come out tomorrow morning. They'll place a PICC line during the same anaesthesia, and that should suffice to keep the transplant on course while what next? is decided. We had a may-or-may-not be related blood infection on Thursday that reared its very ugly head with rigors and cyanosis (that's shaking like a leaf and turning blue in the lips and fingers for you lucky non-medical folks) and broke my heart right in two. The shaking preceeded a fever that was caught by antibiotics and Tylenol, and only lasted an hour or so. We did find out that (1) they respond quickly if it's an emergency, (2) 20 people fit in one small room, and (3) their swish-boom arrival doesn't scare Marian. Sweet soul. I was trying to soothe her and she worriedly told me, "I trying to settle down, Mom, but I just can't!" Wanted to make sure I knew she was "good". Oh, very, my dear.

The sweetest thing

beading

I like beading. I make cool stuff. I made a microscope. I made slides that go with the microscope. I made one slide with a poopie slide, one slide was a wet slide, one slide was a blood slide, and that's what the scientists need to look at to make sure you don't have any germs in your poop, wet, and blood. And I made a stethoscope, and I made a formula bag (formula is what I eat), and I made a bottle of pills and a shot, and I made tubing for a blood test. And I made a bottle half full of blood and a pill bottle I talked about. The medicines that I made were I made two little pills of endocort, I made synthroid that I take. Two hours after my feeding my mom gives me my synthroid. And I also made another blue pill that was light blue, not dark blue, and I made two green pills. And I'm making another pill bottle and I will show you all the pictures when we are done. Bye-bye for now!

t-shirt orders

I'm placing the last-for-awhile T-shirt order on Wednesday. E-mail me with special requests or questions: three_goats@yahoo.com.

Pre-ordered shirts will arrive in about 3 weeks: 2 week turnaround at the online shop I order from, and a week of shipping.

thank you, NBC 10

for posting Marian's segment online. You can see the video story on our "Little Superstar" right here!
http://video.nbc10.com/player/?id=240730

We might even get to watch it tonight if the hospital wireless suddenly has a warp speed moment... (edit: it was really slow, but we watched anyway, and loved it!)

and so it begins

Marian's having a bit of a nap now, recovering from surgery to place a double lumen Broviac catheter (as she explains it, "it's 2 tubes that go to my heart and now no more pokes!") and a very late night in the ER. We were scheduled to come in this morning and start our BMT adventure with the surgery, but crazy intestine action this weekend had the powers that be concerned that she was dehydrated, not really the way to start before fasting for surgery. So Nathan finished up taxes and I finished up all the unnecessary packing that made me feel better and we rushed out to Philly. Except it all took us forever and we didn't get here until midnight :). Into the room by 4:00 am, though, which actually exceeded my expectations. We've been coping via games this visit, with Settlers of Catan in the ER and Nertz (a card game) in the surgery waiting room. I was giddy with lack of sleep and panic, but have been able to keep it silly instead of sobbingly so. Such a fine line :). I think the worst part of being at the hospital, other than the REASON, is all of the sad parents. The waiting room vista is seriously sobering, and slipping through the ER to our triage room (our doctor arranged for us to skip the soaking in germs part) almost brought me to tears (granted, a rather easy feat). Luckily, our room overlooks the ER because, for some reason, the ER waiting lounge has a 9-story vaulted ceiling for our viewing enjoyment.

But we are safely settled and the princess is resting well. So far we've only dipped into the Legos in her treasure bins, but great things are in store! Thanks for checking in with us.