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Our day...

January 8, 2013
The Mount Rushmore of Doctors...that is how our wonderful social worker referred to the meeting in Lucy's room this afternoon.  Three of DuPont's finest came to see us, all at about the same time, to discuss the good, the bad, and the ugly.  There were a lot of tears, and also a lot of laughter.  Laughter mainly because these docs are down right amazing and childish all at the same time, that is what makes them awesome pediatric docs.  If you knew the serious nature of the issues we were discussing, I'm not sure you would laugh, but these guys know how to lighten the mood.

I am going to revert to a list format tonight to touch on the topics of our day.  Things are not looking so good at the moment and I am too tired to try and write about all of it in nice paragraph form.

Here goes...

Lucy's calcium levels are finally coming down, which is helping to contribute to her lucidness.  She is having brief moments in which she is not sleeping.  I hesitate to use the word awake to describe her as that is not befitting, more like aware is what she is.

We discovered last night quite surprisingly that Lucy is unable to see.  She can see light but is unable to see things.  Ophthalmology has been consulted and after discussing things with them, we suspect that Lucy is dealing with cortical vision impairment.  Yes, this is quite shocking, and no, we don't know why this is happening.  We can only speculate that she has suffered a set back neurologically.  I will write more on this in a later post as I am only just beginning to process this.

Her kidney function is not great but improving slightly ever since we started flushing her with extra fluids, reducing the volumes of her medications that are known to cause renal issues, and cutting back on the use of vancomycin.

Lucy underwent a HIDA scan today to see if we could get a better idea where in her biliary system things are backing up.  We were hoping for clarity with this very long and very difficult study, I think the results have caused more confusion.  We are going to repeat some of the imagining studies again tomorrow to see if we can get clear picture of things (pun totally intended).

Lucy received a blood transfusion yesterday. Sadly she was not sporting that post transfusion glow that we so look forward to, she just looked puffier today with liver numbers that indicated that she was having a difficult time processing all of the new blood she received.

We are continuing to assist her kidneys by pumping her full of fluids and then emptying her of fluids.  All of this is in an effort to flush the dangerously high calcium out of her body.  This process has resulted in some even more serious electrolyte issues, Lucy's potassium was critically low again today which had us making yet even more changes to her TPN and fluid bags.

Dr. R has a theory as to why Lucy is hypercalcimic, we are going to be doing some blood studies checking her iron levels.

Like I mentioned above, I had the opportunity this afternoon to discuss "things" with three of the most amazing doctors in this hospital.  Each of them has their own unique approach to how they see things, but all of them share the same desire to give Lucy the best quality of life.

Our afternoon meeting lead to a serious evening meeting with our main doc...which concluded with lots of tears.

(I can't imagine being any place else at the moment...)

Drew is here with us tonight, we need time to process all of this, together.

Thank you so much for your thoughts and prayers, love and support.

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Susan said...

I simply can't imagine what you are going through. Praying...

... kinda wish we were stuck in the same hospital. At least that way I could give you a hug!

Susan said...

You don't know me but I haven been following your blog for sometime. I want to tell you that I am crying too for you all. I will be sure to pray extra hard for Lucy, you and your husband, your other children, and the doctors. Your blog has showed me how to be stronger, how strong love can be, what an extraordinary family you have. And Lucy has shown me to fight and never ever take health or life for granted.

Sara Eaton said...

I have followed you blog for some time now. And left the blogging world after our sweet Mylee went to heaven in June. We have been keeping all 6 of you in our prayers!!

Lots of love,
The Eaton's
"Never Give Up"

Laura Rosenthal said...

My heart literally breaks for you. I know far to well what those "talks" are about, as I had to have the same talks myself with the amazing Dr. R while in the hospital with my sweet Bailey. Talks a parent should never have to have about their precious child. I hope through this most difficult journey you can find some sort of peace an comfort, knowing that you have done everything in your power to do what's best for your little angel. I will continue to pray for your family and especially for sweet Lucy. xoxo!