January 2011 – The New Home Routine

Momma gives kisses before surgery

Packed up & leaving hospital

Lil’ Sophie’s surgery for her Broviac line went well. She now has a what looks like an IV tube coming out of her chest. The nursing staff and home care nurses, have spent hours going over all of the details of her care instructions. We have been taught how to administer her nutrition/meds through the line, change her dressings, sponge bathing (no more baths for the next several months), and how to prepare the nutrition bags.

We’re learning more than we ever wanted to know about syringes, vials of chemicals, Heparin flush/locks, and flushing IV tubing. I’m pretty sure we now have enough antibacterial hand sanitizer and alcohol swabs to clean the neighborhood.

For the last 3 days a nurse has been coming to our house for a couple hours in the AM & PM, to help get us set up with a new home routine called TPN (Total Parenteral Nutrition), which we’ve now learned to administer without help. Every night Lil’ Sophie’s Broviac line will be hooked up to a tube and pump that will slowly give her nutrients directly into her bloodstream over a 12hr period. In the morning we disconnect her from the pump, and start a fairly normal day. The nurse comes still to draw her blood through the Broviac line, so Sophie does not have to deal with any more needle sticks.  We still give Sophie bottles whenever she acts hungry, but most of her needed nutrition is coming in through the line overnight.

We were afraid that Sophie would pull on the line since it’s now a fairly semi-permanent part of her body. It’s secured with stitches and taped down pretty well with dressings, but the connector (clave) is always hanging inside her shirt. On occasion, I see her trying to hold it but for the most part she seems to have accepted this new appendage and usually leaves it alone.
The nurse provided us with a scale, and with regular weight checks and lab draws we will be monitoring her very closely to see if this course of action is working. Her GI specialist said that we will know within the next 3 months what will happen next.

Please pray this TPN treatment works and her body starts to grow. We need to get her out of such a high risk state so the liver transplant surgeons will be willing to put her on the transplant list. Thank you for all the encouragement, love, and prayers you have given us and Lil’ Sophie.

Chilling at home after surgery

See my new appendage!!

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~ by Jenny Bagwill on January 9, 2011.

6 Responses to “January 2011 – The New Home Routine”

  1. Thank you for taking the time to keep us updated. With your busy routine, I know it can’t be easy. Sophie is in our constant prayers & with the Lord’s help – we will pray her CHUBBY in the next months!! Thanks for the pictures, too – she is soadorable. Hugs to all of you & God Bless, Lee

  2. Thanks so much for the update.We were wondering how you guys were all doing.we are thinking of you always.I appreciate the love and concern you show for our family too.

  3. Hi Jenny…

    I marvel at all the changes Little Sophie has brought to your lives…I know she must bring you so much joy. I pray that God continues to give you the minute by minute strength to press on and that He grows your marriage in ways you never dreamed possible.
    Wishing I could give you a hug…I love your updates and pray for you daily!

    love,
    Emily

  4. We are praying for you each day!

  5. Every time I read one of your updates I get so emotional! You two are truly amazing parents and Sophie is so lucky to have you! God Bless your adorable child and I will pray that she thrives! – Jennifer Loyd

  6. Thank you so much for the Sophie updates. Continued prayers for all of you. Take care.

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