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Cook Hospital Day 6 - Update 8:58am

Tuesday, November 17, 2009

This update is written by Breck as Brian has returned home to continue school work for now.

Bennett has been so comfortable for the last 7 hours.  He's sound asleep right next to me, resting so peacefully.  He has had no feeds since 2am (7 hours ago) and the only sound in the room is the ticking of the IV pump.

A new nurse is here for the day.  Bright-eyed and ready for her shift.  I am feeling terribly sad and anxious.  I will do whatever it takes for neither Bennett nor I to experience what we did last night.  I gear up to begin a fight.  It always happens at the beginning of the shift.  The new nurses think I'm over-reacting and that Bennett is just a fussy baby.  I must begin sharing our story - why we are here, what we have been through, why what seems like a good idea has already been done and hasn't worked.

A nurse that I have been pretty fond of (she was our nurse a few days ago) came in a few minutes ago.  She's the charge nurse (the nurse over all of the nurses during the shift) and probably feels some ownership of us.  She came in to let me know "the plan."  "The plan" - her plan - is to start Bennett back on his feeds as normal.  I protested stating I was willing to try but was hesitant knowing that it is the feedings that are so painful for him.

She persisted, explaining he needed to get better and that there is no point in waiting since he needs to gain weight.  I broke down.  I am at my breaking point.

She didn't much respond to a mother's tears of pure desperation to keep her child well but most of all from hurting.  I swallowed the tears realizing she wasn't "hearing" me.  I nodded in agreement that I would go along with "the plan" - her plan.  She walked out and shut the door.  Satisfied, I suppose, that she was in control.

I completely lost it.  Feeling alone and so lost.

I will not watch my baby be tortured.  We have not solved the problem and we are in the middle of trying different interventions.  I am willing to *try* anything.  I am reasonable and unequivocally want what is best for my son.  But I will not continue to sit back and watch my infant squirm, squeal and thrash in pain. 

Nurse, you can join me or you can fight me.  But it's time for Momma Bear to set limits. 

God, give me the strength to fight...the ears to listen...the wisdom to follow...and the heart to feel. 
Most of all, God, be near us, Momma Bear and her baby cub.

5 Responses to “Cook Hospital Day 6 - Update 8:58am”

  1. Breck, I'm so sorry that you have to continue to watch Bennett in pain. I pray they find a solution quickly. Has he increased in weight at all? Please keep us posted. It's so hard to not physically be there to support you. This blog is our lifeline to feeling connected, so post as you can, my friend. All our love to you.

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  2. Just wanted you to know that I am faithfully reading and praying for you. You are on my mind all the time. As much as we can across the world, we are walking along with you.....in our thoughts and prayers. Hang in there, Mama Bear.

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  3. Breck - As always, we are praying for Bennet and for your family, but today, I'm praying for you: for strength to stand voice your concerns for your child, for wisdom to know what choices to make, for endurance to make it through the day, and run this race laid out for you, for peace that God is bigger than CF and has a plan to work this for your good, and for joy in spending time with your precious little boy today. -Devin

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  4. :-( I wish I could come sit with you today.

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  5. Breck, I just hate the thought of Bennett in so much pain. I can imagine how you feel! We are all praying for all of you; including Bennett's nurses, his doctors, and the other sick babies who need our prayers. God will take care of it. We just wish he'd hurry, don't we? So good to see your mom and dad in the pictures. Love, Ms.Ann

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