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Where things stand...

January 14, 2013
We are not quite sure where things stand...we are living one day at a time at the moment.  Trying desperately to figure out Lucy's new baseline.  The results from Lucy's MRCP found that "there is persistent significant dilation in her common bile duct. The distal common duct again tapers markedly just above the Ampulla of Vater".  In other words, the MRCP detected that there is a blockage, again, lower down in her bile duct this time.  This narrowing is in a different location than her first stricture that we discovered in November.  The findings from her most recent MRCP have been sent off for review to two separate GI doctors who preform pediatric ERCPs, the one at Jefferson who recently preformed an ERCP on Lucy, and another at Hopkins in Baltimore who apparently sees more pediatric cases as well as many of the liver transplant kiddos here at DuPont.  Our hope is that one or the other will be willing to take a look at Lucy's case and make recommendations that will hopefully improve Lucy's current situation, be it repeating an ERCP, placing a stint, surgical options, or all of the above.  We are seeking as much information as possible so that we can make the best medical decisions for Lucy's life.

The MRI of Lucy's brain did not show us much of anything we didn't already know, mild atrophy blah, blah, blah...most likely related to progression of her mitochondrial disease.  They did find that her left jugular has no blood flow which may or may not be causing some issues.  We are going to do an ultrasound on Monday to investigate this further.  Seriously, this kid is an anomaly, everywhere we look they find something "remarkable" about her.  But we already knew this about her, that is that she is remarkable :).

Lucy is holding her own :).  It turns out that intubating her and putting her on a ventilator for a short period of time helped to improve her lung function by inflating her lungs fully, something she doesn't do well because she is such a shallow breather.  Antibiotics finally started doing their job on Wednesday, Lucy has not had a fever since that time!  Her vision issues are just that, still an issue.  Although she is still pretty sleepy, she has had more periods of time in which she is awake and interacting with us more than we have seen in awhile.  This is so amazing when you consider that we have been discussing "end of life" issues with our medical team since the day of admission.

I don' t think I need to tell you that things have been difficult, we have had to discuss the unimaginable, the way we envision our little girl's end of life.  What we do, the decisions we make, the choices we are presented with, ultimately will determine how long or short her time here on this earth will be.  Medicine can do a lot to keep the human body alive, but the question we are faced with is how much medical intervention should we allow to keep her body going. There is no easy answer to this question.  You can not imagine what it is like to be in our position until you are faced with it personally.  I would never wish for anyone to be in our shoes...

We have had a quiet, boring, non medical drama weekend...just what we were hoping for!  The week ahead brings new hope and lots of decisions.

Thank you all so much for your thoughts and prayers, love and support, it means so much to know that so many care.
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~Jana~ said...

I cannot imagine what you are going through. My heart is so torn for you. Many many prayers for peace comfort and answers.

Debbie said...

Thanks for the update....I am sure it is draining to relive and repeat it all. My heart breaks for how our mito kids suffer so....and how we as parents are faced with deciding such horrific decisions. My prayers are with you for peace, comfort and wisdom.

eckman fam said...

you are right. i don't ever want to be in your shoes. you are handling yourself beautifully in the midst of such stress and exhaustion. hang in there and please know that there are more people than you even know of that are praying for you and lucy....and my lucy always prays for sophie too....

Stephanie Paulsen said...

you don't know me. I found your blog a while back and check on how Lucy is doing ever since. I hope you do not mind! Just wanted to let you know that Lucy and your whole family are in our prayers. May there be peace and comfort, good answers and many smiles in your future! Best wishes from the other end of the world and a big, warm hug for Lucy from the Paulsen-family

natb said...

It is very hard when you are in a position like that. When my mom died, making that decision to no longer medically intervene was very difficult. I agree that I wouldn't wish it on anyone. I am praying that God would just pour his peace and mercy on you and that He would guide each decision you make.

Sara Eaton said...

Always in our prayers!! Praying for peace and comfort.

Hope -

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13 ♥

Lots of love,
The Eaton's (Mylee's mommy)
"Never Give Up"