Until I get to go to the real heaven someday, this home feels pretty close to it tonight. My king size bed is calling my name, but Dave and I are staying up to do our next dose of Cefepime via his port at 11:30. Tomorrow we are going to work on a better schedule for this, but tonight we have to give it late. I have successfully already given my first dose of the antibiotic via his port and we both did great!!
The big news of the day was that Miss Priss Hope Madeline went to preschool at the hospital today with Haley! They were the only two little girls in the class and she LOVED it. I am so impressed how less shy she is becoming. She had to be "checked out" by a nurse and then she got a sticker on her dress to say that she was safe to be in school. She went from 9-11:30 and then went back again from 2-3:30. She loved it and here is a terrible picture. I was trying to be sneaky and get a picture where she could not see me and it turned out terrible:) I am so proud of our shy girl who branched out to be with a new teacher today. That is such a WONDERFUL service at the hospital. Patients and their healthy siblings can participate in school at the hospital. The other miracle is that she painted a huge picture and we managed to get it home unharmed in the car! Ha!
These weird looking bottle things are all over our fridge because this is his medicine that we have to give via his port. A nurse came and educated me right before discharge and frankly we did okay:) Because his infection was pretty serious he will need to be on this medicine through 2/7/12.
Here is sweet girl in her own bed and snuggling with her new "alvin" that she made at Build-a-Bear. The hilarious part is that she thinks that this Chipette's hair looks like David's now! She said "wook Mommy-her hair is wike Dave's" I just about rolled in the floor. She also calls the elevators at the hospital "Alligators" and is obsessed with riding in them.
Tomorrow my youngest babes and I are going to cuddle, snuggle, and rest up. I am weary tonight from a long day today. I am so thankful to be home even if we have to return Thursday for a check up and port change. The doctors are hopeful that his nutrition will kick in better at home. He was on TPN (liquid nutrition) in the hospital but that is not a great long term alternative. Since we have been home tonight he has eaten some oatmeal and some Hershey kisses. He is painfully skinny but now that his counts are rising and he is home we are praying he will start eating better. We are trying to avoid the feeding tube via his nose.
The other problem he is having on a regular basis is severe back pain. He cries often with his back hurting and the pain is attributed to the GCSF shots. They do cause back and joint pain and thankfully a heating pad seems to help. Poor pumpkin.
We are so thankful to be home. I hate the packing and unpacking part of the hospital, but we are so blessed that Camp Pendleton has laundry. I mostly brought home clean clothes that I can repack for next week. David and I will be sticking close to home since he is considered neutrapenic due to his low counts. No public places, school, or Walmart for this Rock Star anytime soon. We are going to have school at home this week and enjoy our time resting up.
Thank you dear friends for praying us through this last 8 days in the hospital. The Lord protected our Little Rock Star and we are so thankful. Good night from Camp Robinson!!