I thought I would post a couple of pictures of our sweet girl and a little update. Last Saturday Bella got sick. She is still sick – but still home. So long as she is on Pedialyte, her tummy is OK. But she just isn’t ready to go back to normal feeds yet. Today she is acting like her head is killing her. I do understand because being the sweet thing that she is, she shared her sickness with her Mama. At least I understand what she is experiencing, so I understand why she doesn’t want to be held or isn’t enjoying her bath. Last night she remembered how fun it was to brady – a new way to worry this Mama’s heart. She is requiring more suction and breathing treatments than normal.
The good things – The doctor says this is a good opportunity for us to have a “dry run” while she is sick, but not in an emergency situation. Agreed. We learned what hospital 911 would take us to for stabilization before transport to TCH. We learned the system for calling the after hours doctor. It’s just a bug and will run it’s course. She does not have the flu, RSV, or RetroVirus. Her blood gas came back good, so she is ventilating well.
I’ve been asked why do we travel by ambulance. Well, her nursing agency has her condition listed as guarded. When we went to the doctor on Monday and had to go from the 17th floor to the 8th floor for an x-ray, the doctor wanted our paramedics to travel with us. She told the nurse that there is no such thing as too cautious with Bella. She is home, but she is a delicate little thing.
I’ve been asked if it’s easier to be home. It’s getting easier. It has been an adjustment – that’s for sure. It can be pretty intense around here.
Jason and I have big hopes for this little one. One day……. One day she will not be on a vent. One day she will not have a trach. One day she will run around the house. One day she will go to school with her sisters. One day. Until then, we just love on her and live for those sweet smiles!