October 2010 – And so it begins

 

Um, yes...I'll take a bottle to go with my sugar packet. Thanks.

 

Well, I’d have to say this is the week I personally have been dreading. In the morning I will take lil’ Sophie into St Louis Children’s Hospital. The specialists will start a day or 2 of infusion to prepare Sophie for heart surgery.

The infusions have become a routine procedure for us. Narrowed veins and raised pressures through out Sophie’s circulatory system cause leaks. These leaks pool blood in her abdomen (ascites). Based on a previous very bad experience (that landed her in the PICU at another hospital), we’ve learned that the ascites needs to be drained prior to surgery. So the hospital staff will start an IV line with powerful diuretics to flush out this extra fluid in her body.  We’ll do this for a couple of days and get all of our pre-op testing, and meeting the surgeon done during this visit.

Interestingly, over this weekend Sophie’s belly miraculously starting going down here at home. It actually looks pretty good. So I don’t expect the infusion to last more than 2 days, in which we will be released.

Then Sophie can come home, get some good rest and be ready for her open heart surgery this Friday Oct 22nd. The surgeons will be replacing her pulmonary heart valve. We’ve been told that because of her size its common for them to leave her chest cavity open as she recovers in PICU. Once the swelling goes down after 2-3 days they will close her up.

In an ideal situation, recovery is 7-10 days in hospital, and 2-3 weeks at home. So we are asking for prayers, for her, the doctors and us as we start down this road. This first step is to fix Sophie’s Pulmonary Valve Stenosis, and is the beginning of a series of surgeries that the specialist have outlined for lil’ Sophie.  She will still need a liver transplant. Another heart procedure. And a life time of medications and maintenance to keep her healthy.

But for now…. let’s just focus on step 1.

 

I just want to sit here a little longer...

 

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~ by Jenny Bagwill on October 17, 2010.

12 Responses to “October 2010 – And so it begins”

  1. Thinking and praying for you and your sweet little Sophie. Big hugs to you.

  2. We will be praying extra prayers for Sophie this week! Many thoughts and prayers are with you all.

  3. Please know that we are all praying for Baby Sophie and you all this week. Wish we could send you all hugs as well.

  4. Sophie is in my constant prayers and so are you and Bryce. This morning I ask my church to pray for her as well. Prayer is the most powerful thing we can do & we all know that God is listening and making the way ahead for Sophie’s surgeries. God Bless, Lee

  5. You all are always in our prayers, and I’ll be asking everyone I can to pray with us this week. We love you guys.
    The McClures

  6. Praying for complete healing… love you guys

  7. Thinking of you and sending peaceful, healing thoughts your way.
    Sophie is such a beautiful girl!

  8. What beautiful red hair she has!! We wish all of you peace that only comes from God’s compassion. As always – praying, praying, praying…

  9. We are right there with you in Spirit and prayer. Peg and Chuck

  10. Hangin little treasure we love you and God will see you true – always remember we are an army praying for you, mom and dad. Lots of hugs Monique

  11. My love, thoughts and prayers are with you all. What a journey you are on. Sweet little Sophie is God’s child. She is here to teach us all. Karen Adderton

  12. Thank you for all the encouragement and prayers!! They mean so much to us!

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