Our Days Here...

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How We Spent the Weekend…

I just finished editing what I am going to assume to be one of several revisions of Jack’s science fair project.  Long distance homework…we’re getting good at it!  I’m a mom, no matter where I am or what the circumstances, my job is to be “there”, to encourage, to crack the whip when need be :).  Drew emailed me an update on the project and what Jack has finished.  Not bad, not...

Today...

Today was much better than yesterday, so very thankful for that. Sleep is scarce for me these days, I am looking forward to getting some tonight. Praise God for antibiotics,  they are lifesaving!  Infectious disease has officially been added to our team of specialists, we are in a difficult spot when it comes to all of the bacteria and yeast Lucy has growing in her body.  We...

I'm so tired...

I am going to keep my words short and sweet and just say that it was a difficult day!  We finally have Lucy back on the correct antibiotic, her pain is more under control, she has not retched or vomited since noon, and her fever is all but gone.  Things appear to be heading back in the right direction, again.  We are still waiting to hear back from the doctor at Hopkins.  We are...

It's 3 AM...

We're awake!  Lucy woke terrified, shaking, in pain, very tachacardic, retching, and with a fever of close to 105!  We are making yet another change to her antibiotic coverage.  Labs and cultures are done.  We are waiting on orders for an increase in her pain meds.  This screams cholangitis to me again...still.  I am looking forward to talking with our main doc later...

A little Q & A...

People ask questions because they are seeking knowledge, information, understanding...I fully respect and GET that.  I like to do the same thing, just ask any of our docs :).  We often get asked questions about this, that, or the other.  I thought I would share a few of these questions and answers with you.  Perhaps it will help you to understand, give you some incite, or possibly...

Here we go again...

Fevers, retching, vomiting, tachacardia, increasing abdominal pain...here we go again!!!  God, my baby could use a break! On Friday we changed Lucy's antibiotic coverage and discontinued her antifungal, much to my dismay, all in an effort to keep her from becoming resistant to any more broad spectrum antibiotics or antifungals.  I have a feeling that we are going to be making the switch...

T.G.I.F.

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Hurry up and wait...

Things with Miss Lucy have been somewhat...sorta...kinda... stable this week.  We are continuing to try and figure out her hypercalcemia issues.  Not sure if that is possible, but we have all the best minds working on it.  Despite all of our efforts to lower her calcium levels, her serum calcium as well as her ionized calcium are continuing to rise.  Our best guesses at...

Priceless...

Her Expression when she heard "the kids" were coming to see us tonight ...priceless!...

How was your day...

Today we saw a lot more of these baby blues! We did a lot of hanging out today.   We are in the hurry up and wait mode, waiting to hear back from the two GI docs who are reviewing the results of Lucy's most recent MRCP to make any decisions about what we'll do next.  Unlike the past few weeks, Lucy struggled to find sleep today.  We are weaning her down on some of her dilaudid...

Where things stand...

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,...

Tomorrow's another day...

So very, very thankful for another day...Lucy showed us that she was still in there today!!! We have so much that we need to figure out, but to see this face so full of life today was an answer to so many prayers!! ...

She's back...

We are back up in our room on our regular floor, I suppose someone should cancel our reservation in the PICU. Lucy is breathing on her own, with the help of a litter of O2...huge sigh of relief!  Dr. R commented to me when I told him that she was breathing on her own, "...of course she is, breathing is her strong suit", then I saw him take a big sigh of relief too :). We have too much to try...

Update...

Lucy just got out of the scanner at 2:45pm, it took a little longer than expected because they wanted some more imaging studies.  We are going to keep her sedated and intubated while our urology team changes out her suprapubic catheter.  They are even throwing in a shampoo and hair do for us. We are praying that our girl will go back to breathing on her own once extubated.  Thanks...

MRI...

I left our sleeping beauty in the wonderful and capable hands of the doctors and nurses in the MRI suit at 11:31am. We added an MRI of her brain in addition to an MRCP...we are praying that the information we receive today gives us the ability to make the best decisions for our girl. Thank you all for your thoughts and prayers, love and support!  Please, please continue to pray for Luc...

Our girl...

Our girl is in the fight of her life...please keep praying for Lucy, for all of us.  Our hearts are hurting as we continue to watch our little girl decline. We are desperate for answers, Lucy is scheduled to have another MRCP tomorrow morning around 11am.  Our hope is that we will get some definitive answers from this test so that we can make the most informed decisions for our girl....

Our day...

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...

Details...

I think I'm pretty good at writing about the facts and details complete with a bit of emotion, but not recently...for that I apologize.   The facts and details are not as easy to process and understand, and as such I am struggling to write sentences that make sense of all of this. Lucy has ascending colangitis again, a serious potentially life threatening infection in her common bile...

Even tougher times...

Our goal for Lucy has always been to give her the best longest life.  This goal has helped guide us through the toughest of times. Today very difficult conversations were had about whether or not we could fix Lucy...and if we should fix Lucy. Drew and I believe that in order to give Lucy any hope of "getting better" and improving her current quality of life we need to move forward with the...

E-cards...

I have received several emails form friends asking if I could please post how to send an e-card to Lucy again.  Here is the link and the information about how to do that.  I can' tell you how much your thoughts and prayers helped carry us through our last admission.  Lucy received over 200 cards from friends, family and blog readers all over the word.    http://ecard.nemours.org/welcome.act;jsessionid=dHj2sk77FBkCCpT1kZ-S7Q** The...

TImes are tough...

Things are not looking so good for our girl today.  She is still febrile, has not been awake at all today,  and clinically is worse than she was yesterday.  She is a mess, one hot mess!!!! Lucy's labs came back this morning looking worse than yesterday.  All of her electrolytes are off, in particular her renal function labs, alerting us that she is renal failure.  She...

Mommy, Lucy is Sick....

(This photo was taken on New Years Day.  Oh how I love these girls!) While eating dinner on New Year's Day Drew and I were talking to the kids about life when Megan said to us.... "Mommy, my nose is dripping." "Why?" "Because I need to cry." I looked at Megan and told her that is was OK to cry and then asked her what was making her feel like she needed to cry. Her response,...

A quick update....

Currently Lucy is one sick little girl.  We are in the right place, she needs to be here right now.  Her labs look about as bad as she does.  She is non-responsive and has been sleeping pretty much for days.   When we brought her home for Christmas, she was not well but our hope was that things would improve.  Sadly they have not. It is suspected that Lucy has cholangitis...

Happy New Year?...

It was good while it lasted...we are packed up and getting ready to check back in to the "hotel DuPont".  Things with our girl are not looking well, and we're not sure what is going on with her.  She has a fever, heart rates are higher, and she is very lethargic.  Overall, she just plain looks sick.  Lucy is scheduled for surgery on Monday to have a cholecystectemy, her...