Days 14-16

What a difference not having a fever makes! I have actually been able to get out of the room (Mommy's still making me wear a mask, though, regardless of the fact that my ANC is higher than the average person's), and I want to play. The doctors have started taking away antibiotics - Gentamicin and Ambizome yesterday, and Vancomycin today. The only one I have left is Zosyn.

I'm tired of taking the oral meds, though. I'm fighting it every time, and the past few days, I have actually vomited right after taking medications by mouth. The mix of Bactrim and Tamiflu came back up two days in a row, so it's good that I'm finished with the Tamiflu now.

The bottom line that you're all wondering about... when do I get to go home? Well, Mommy asked Dr. Pope this morning, and she said that she's a pessimist, and she's looking at Monday as our discharge date. She said that if I surprise her, we might be able to go home earlier. AWESOME! Here are the things that need to happen:
  • I need to be without a fever for 48 hours - check!

  • My counts need to be high enough - check! They are super-high: platelets at 842,000 and ANC at 7,110!
  • I should be eating and drinking on my own, rather than through TPN (my PICC line) or maintenace IV fluids - well, they're working on giving me a larger window of time when they take me off TPN so that I can get hungry, and they have dramatically cut my IV fluids. Yesterday, I wanted to eat and drink during that window, and I did eat a little. Unfortunately, not all of it stayed down. I think I'm not used to moving around so much or eating, so now that I'm doing it, my body is telling me I'm moving too fast.

  • I need to be off the antibiotics - (almost) check!
I've been staying busy... going to PT, OT, and speech therapy, and the music therapist (Beth) has been stopping in to sing with me. I've also been heading to the play room and taking walks more often the past few days. It really makes it nice to take a walk or to go to therapy without being tethered. When they give me a "window" during the day that I'm not on TPN, I'm not attached to anything (Daddy calls it not having a "tail").

Please continue to pray for all of those bullet points above. I really want to go home and move forward with being a "normal" two year old!

1 comment:

Emily said...

Hi Becca,
I love the pictures from this post. You look like you're having a good time. Anja likes looking at the photos of you on your blog and on Snapfish. We are rooting for those numbers and counts to cooperate so you can go home!
Emily, Bjorn and Anja