June 2011 – Digestive Issues

Lil’Sophie has been on the floor for over a week & a half and is having trouble following directions. She was given specific instructions by her Liver Transplant Nurse Practitioner that she better not see any “funny business”. Sophie defiantly spiked a fever that sent us almost packing back to the PICU. Thankfully, it lasted only 24 hours. She must have overheard the liver team say that if she didn’t straighten up they might have to take her back in for surgery. She has since ‘straightened up’.
It’s looking like we’ll be here for a while though as Lil’Sophie’s digestive system is running extremely slow. Part of this is due to the low dose of pain meds that she is still taking. They are weaning her as much as they can without sending her into ‘withdrawal’.  Each night Sophie is hooked up to a feeding pump that sends a tiny trickle of formula through her nasal tube into her tummy. And each night has resulted in LIl’Sophie screaming in pain after several hours. We end up stopping the pump and waiting till morning to revise the plan. No one really knows why this is happening as mathematically the dose is so minor her body should handle it. We’re trying a different method today, but if we can’t get her body to accept the formula then she’ll have to have a GI test to image the path of her digestive tract to detect if there is an explanation. We won’t be able to go home until we find an agreed upon solution for this issue.

Other than that, Sophie is doing extremely well. Her body has seemed to make friends with her new liver and they are playing nicely together. Her labs continually look good each day. We have physical therapy with her daily, pushing her to sit up, stretch and reach for toys in various directions. She’s not quite where she was before surgery but she’s definitely getting stronger each day. Her personality is coming back and her liver team has now witnessed her playing peekaboo with her blanket complete with smiles and giggles.
Child Life heard that she enjoys playing with drumsticks so they brought her a brand new drum that included several shakers, and noise makers inside. She loves it. She’s also visited by Music Therapy as you can see in the above video clip.
Nell has come by and visited her twice, but each time she’s been fast asleep. Maybe Monday Sophie will get to see Nell in her wacky attire. I wonder what she’ll be wearing…..

Lil'Drummer Girl

Gotta LOVE Nell!!


~ by Jenny Bagwill on June 16, 2011.

3 Responses to “June 2011 – Digestive Issues”

  1. It looks like she is loving the music therapy.We hope that she continues to make strides even if they are little ones.Hope you get the digestive issues sorted soon.Keep up the good work Sophie.

  2. This is so awesome! So glad to read and see how wonderful this baby girl is doing! My 6 yr old never says a Prayer without mentioning “lil Sophie”. God is amazing! Keep up the good work Miss Sophie, mommy, and daddy! Big Prayers and hugs from KY!!!


  3. I love the clip of the music therapy and the picture of her playing the drums. 🙂 We pray for all of you each day! 🙂 Hugs and prayers!

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