Shortly after my parents left, the holiday passed, and B's ANC continued to improve, we were able to go home. Bailey hadn't been outside in a month, felt the fresh air on her skin. She was very exited to go home, but with this brought new challenges.
{B, mommy & daddy outside and headed home.}
When these kids are released from the hospital, they are very sick. Their immune system is still completely wiped out and slowly fighting to gain back strength. She was discharged on several medications and TPN. She still wasn't eating solid food and only drinking water occasionally. She kept it in her backpack. It's 24hrs worth of fluid, so it's heavy. I usually carry it as much as I can though, until it's easier for her.
Because of the chemotherapy, B was going to need blood and platelet transfusion on a regular basis, usually every other day. So while we weren't sleeping at the hospital, we were up there everyday. This became emotionally draining, as I was further in my pregnancy and B needed so much care. I couldn't just pick her up and carry her when she wanted, but I tried. She suffered from separation anxiety as well. B was very quiet and closed off to her family. She spent a lot of time in bed, listening to a show or music. Always alone. It was a challenge for her to re-adjust, she had been confined to a bed and lines (8 at one point) for so long.
{We had a home nurse visit the first few days. She brought this super cool iv pole for B's fluid bag. It made it much easier to get around.}
I was happy to have her smiling, walking, laughing and just at home though. We made the adjustments she needed and carried on...like always.
No comments:
Post a Comment