When I first learned that an MRI detected a mass on my daughter's brain, I was in shock and disbelief. I literally felt that all of the air in my body had just left me. The nurse practitioner who was delivering the news of the brain tumor was so compassionate. At a time when I felt so bad for not noticing all of the warning signs earlier, this medical professional said, "You did a good thing Mom. Many parents would not have taken her to the doctor when you did." She really lifted my spirits and gave me the courage to make all of the twenty million phone calls to family in friends over the next few hours.
Less than an hour after my conversation with the hospital's nurse practitioner, I was told that the neurosurgeon wanted to see me. My husband was at work that day so I talked to him by myself with no support. He was kind, gentle and compassionate as he explained where the mass was and what our next steps were. I honestly did not expect him to be telling me that he and his team would be removing part of my daughter's skull in order to operate on her brain the very next morning. He exuded so much confidence as he described everything in detail. This kind soul did everything he promised he would and then even a bit more. My daughter was in the hospital eight days. He saw her every single one of those days. One day in particular stands out. It was a Sunday. I know from past experience that many doctors don't see their patients on Sundays so it came as no surprise when my daughter's neurosurgeon, Dr. McMiracle, sent one of his partners to check on my girl. This doctor was a bit concerned with how my daughter was progressing. He felt she might require a CT scan or another MRI. He left my child's bedside in order to call Dr. McMiracle. In less than 30 minutes, this wonderful doctor appeared before our very eyes. He double checked on his star patient, but ultimately declared that she was doing just fine. Our family is grateful that this doctor truly cares about his patients and goes the extra mile.
Another group looking out for my daughter was a team of certified nursing assistants (CNA's) assigned to care for her during the first few critical days following her surgery. These "sitters' stayed in her room and attended to her as if she was their own child.
The first CNA who was assigned was not a good fit for my daughter. She did not know how to calm a frightened child and only added to my child's confusion. Thankfully, she was only with us for a few short hours on her first day post surgery. The next CNA was completely the opposite. She had experience working with children with autism. She knew exactly what to say and do to help her. She established protocol that all of the CNA's who followed her kept. It was so cute to hear each CNA tell the next CNA how things were done. Little tips and tricks that seemed to make caring for my child's unique needs a little easier.
My daughter on the road to recovery
Still another CNA took it upon herself to get my daughter up and moving. She was able to get her to walk down to the play room. Later on she took her out for some fresh air, her first in a week. I believe she was also instrumental in getting my daughter to actually eat something. Granted it didn't stay down, but it was a start.
My daughter has been home just over a month now. She's made remarkable progress in walking and talking during this time. She has built upon the efforts of the hospital staff. My family and I are grateful for the care that she received while she was a patient at CHOC Children's Hospital. So many of the staff there really went above and beyond the call of duty. We are indebted to them.
The first wheelchair my daughter used. I have a similar one in the trunk of my car that sits mostly unused now.