lessons learned

As you have gathered from my previous post, B has recently been hospitalized at UCLA’s Mattel Children’s Hospital. What you might not know is that she went back for a re-do as her shunt failed again. This time the abdominal end got obstructed.

All throughout this time, my eyes were as dry as the Sahara desert. Heartless much? I say no. Because deep inside my tears were flowing like Niagara Falls. But through the years I realized that when I involve a lot of crying I seem to lose sight of the goal in hand. My decisions seem to be not as stable as I though they were. This time, my game plan was to trust that the professionals will do their job to do the best they can do to fix whatever’s wrong with my daughter. I, then, have that job to make sure they do their job with high standards. I have to make sure that the decisions I make are for B’s best interest.

Then that time that I brought back B to the ER after being discharged is a whole ‘nother story. I was crying like a kid lost in the woods (say what?). Anyways, she was holed up in the hallway because all the rooms were occupied.

I do not have a problem being holed up in the hallway.

My problem though is that nobody seem to check up on us and that B was in so much pain and she hasn’t received a drop of whatever painkiller that’s appropriate to the severity of her pain (meaning narcotics). Zero! And she kept looking at me and shaking her head saying “you don’t love me because you’re not even helping me”. Now, how am I supposed to keep it together when my child, my firstborn, tells me that. That hurts but what am I supposed to do? Sis told me to pull a “John Q” on them and my hurting self seriously considered that but I though “with what?”. Hay!

Eventually, neurosurg decided to redline her to the OR.

Meanwhile, I waited in Maddie’s Room (Surgical Waiting Room). It was at this time that I thought to myself “this is how it’s going to be like”. Never knowing when will B’s shunt will get obstructed. No warning signs except for those damn headaches. In as much as I do not like any of my kids to be in pain, I know that B’s life will be filled be fear every time she has a headache.

I have now accepted that I have to be ever present, ever available, every time so that if she needs help whenever her shunt fails, somebody’s there for her.

I do love my B. She will forever be my baby girl (even if she tells me a million times that she’s no longer a baby).

Original post Mar 24, 2010