Thursday, January 17, 2013

The Boy Who was Stuck in the Box

Today we had a port placement scheduled in the wee hours of the morning.
We were there on time; in surgery triage; being prepped for the procedure.
And Bradley had a coughing fit.
And the nurse hooked up the monitor to check out his saturation.
And he was in the 70s with the oxygen going.
And they asked if he had been sick.
And I said he had.
And the nurse shook her head and said she didn't think we could go through with the surgery then. 
SAY WHAT?!?! You mean I don't have to cut open my baby today? I'm outta here!!!
But she wanted me to talk with the surgeon and the anesthesiologist first.
And the surgeon came in. And he looked at Bradley and said he wouldn't recommend it.
I told him I was cool with that and I started packing Bradley's things.
He said, "You don't have to do this Mary. It's purely elective. No one is making you do this."
And I told him I knew that, and I felt relieved.
He told me I didn't have to ever do this if I didn't want to.
And I told him I don't.
He said, "We can wait till forever then."

And the nurse told me to wait, and not to run out the door.
She needed me to sign somethings and finish the paperwork.
I hastily signed it and I walked out into the parking lot
and welcomed the early sun on me and Bradley's faces.
And I came home and picked up the kids. We went shopping with Bradley.
We went to lunch too.
And we all took our turns pushing Bradley around.
And I came home after our fun day, to work.
And right as I was finishing, and starting to think about making dinner,
a dear friend posted that her special son had passed on to be with our Heavenly Father.
For some reason I was the first person of all of her friends to see the status update.
And all I could think was "<3"
And I started to cry an uncontrollable cry.
 I came into my room to check on Bradley who was having his afternoon nap.
And he started coughing.
And he couldn't stop.
And I changed his diaper and held him in my lap and touched his skin in my grief.
And thoughts of my friends special son laced in and out of my mind. 
He and Bradley have a lot in common.
Lots of the same disorders.
Very close in age.
Both boys.
Both the youngest in their families.
They have the same wheelchairs too!
And I could not stop seeing his face as I was touching Bradley's skin.
And Bradley kept coughing.
And then he started to cry with me.
And I realized he was struggling to breath.
And I checked his saturation and it was VERY low.
And I started trying to get a hold of Tom.
And I could not get through.
And we loaded in the car and I dropped the kids with a close friend.
And I drove down to Sunrise.
And I vowed to myself, before I walked in the doors,
that they would not poke Bradley with any needles.
That I just wanted some antibiotics. And that was all we were there for.
And Bradley would not breath for them either.
And they rushed us back to the room and they put a bag on his face to help him get more oxygen through his mouth.
And he struggled to breath for a bit.
And they told me he looked sick.
They took some swabs. Influenza and RSV.
They took some xrays of his chest.
And I asked what they were going to do.
And they said they wouldn't know till the tests came back.
Finally the tests started coming back.
And Bradley started breathing again, for no apparent reason.
He had no breathing treatments.
No medications.
And the ER doc said he'd give me antibiotics but
that he didn't know what difference they would make.
I think it is time to talk more frankly with our doctors.
About what we are doing.
What if I just want Bradley to live a happy life and stop with all these tests and interventions?
What will that mean for us?
What that will mean for the doctors?
Because I'm tired, and I think Bradley is too.
And we don't have to do this if we don't want to.
And I told my Mom tonight that I feel like my son has been stuck in a box for 18 months
and that if he could be free from that box I would feel a great relief.
And me and my Mother cried.
Bradley is so special. And we wish he could stay with us, so desperately!!
But my intuition is telling me that his time to get out of this box is getting closer.
And he and I are tired of him being in it.
So if our Heavenly Father has mercy for us, he will grant us relief.
And let our dear Bradley out of the box.