January 24, 2011 - There's No Place Like Home! Day 31

Hi everyone!

Well, we are home! YAY! It was a pretty uneventful day. We spent most of it just waiting for the prescriptions to be ready. Alex came home on about 12 different medications. These vary is the times they need to be taken in a way that should be ooodles of fun for everyone. She has meds due at 2am, 8am, 10am, 2pm, 4pm, 6pm, 8pm, and 10pm. See why I wasn't so hip on bringing her home. This doesn't include the IV TPN liquids that we have to prepare (injecting vitamins into the bags) and then run through the pump. I've had to cut back my wine to a level where I can accomplish all this :D And none of these meds are anti-nausea or pain meds that can be taken every four hours. I'm trying to decide between the cleaning schedule and the med schedule, when I am going to sleep? I am sure it will mellow out as a few days past.

Well, let's talk blood counts today. These are EXTREMELY good!

Hct (hematocrit red blood cells) 28.0

Platelets - 46

ANC - 1,300

These are incredible counts. Her platelets have been steadily climbing so the docs tell me this is because those have engrafted as well. These are usually the last to engraft and take most patients a LONG time for this to happen. Her ANC was actually 1,800 yesterday which is on the very low end of normal! That is so awesome. They've dipped again today, but this will be common as all her meds are designed to suppress the immune system so things don't go crazy inside her marrow.

We had packed up most of Alex's room last week. We had very little to do today in order to blow the joint. It was a very peaceful discharge. We had many people come back and congratulate Alex... some with tears in their eyes. It's a wild feeling to walk outside those doors with Alex after such an ordeal.

Right now we are waiting on the home health team to stop by. They don't come until 9pm because I don't start the bags until 10pm. They will run over 12 hours. I have never ran a pump system before although I have administered my share of IV meds. This will be a new experience and I am a little nervous about it. I am sure once I learn it will all be OK. The entire bottom of the fridge has been designated to IV nutrition. I will take a photo of the bags tonight and post later.

Alex has been saving up for an Apple MacBook since the beginning of last Spring. Dan, my mom and I decided to throw in a bit of money for a "Welcome Home" present today. She has actually been 'up' playing on it. It's been nice to see her distracted by something. This kid that LOVES to read, hasn't read a thing in 41 days. She just doesn't feel well. I hope that will change soon. Even a homecoming like this is bittersweet because you can just see by the look in her eyes that she doesn't feel well. It took a LOT out of her just to walk down to the car, the ride home and deal with walking into the house and into her bed... didn't even stop to go to the bathroom... did not pass go, and did not collect two hundred dollars :D I gotta say though... as I look down and see her resting on the couch with Dan on his computer next to her... the dog sleeping at her feet... It's good to be home!

Alex is outside! After 41 days she is in the car and ready to go home!

Alex playing Phase 10 with her dad

One of our favorite nurses - Boston Kathy - Hilarious woman that has just joined roller derby. I can't wait to go watch her. She's a riot! (Alex wants everyone to know she is smiling under her mask:) Alex loves the "LifeFlight" hoodies. Her dad bought her one for Valentine's Day before he left.

These are Alex's daily meds

I.V. supplies