Home for the Holidays...

We are home!!! We are so tired!!!! We have so many things that needed to and have to get done, but for right now I am going to sleep in my bed, next to my husband, with all four of my kiddos sleeping under the same roof. THANK YOU SO MUCH FOR ALL OF YOUR THOUGHTS AND PRAYERS, BEING HOME AGAIN IS INDEED AN ANSWER TO MANY PRAYE...

Let's meet at home...

Whenever I tuck my kids into bed I say to them, "Good night, sleep tight, I'll see you when you wakey wakey, but not before I see you in our dreams".  Then I ask them where we are going to meet in our dreams... Disney World is often a popular location for us to meet, or Hershey Park, and for Lucy she will often  say, "in Mama's bed". This afternoon while tucking Lucy in her crib for nap...

Today...

Our day was pretty much the same as our night, no real changes, but no declines either.  We used the word stable to describe Lucy during rounds this morning.  Stable as in she is still febrile, tachacardic, requiring Vapotherm, experiencing pain but not worsening pain, and neurologically about the same - a bit delirious but still responsive.  We are slowly trying to wean her down...

Our night...

It was a relatively quiet night, so very very thankful for that.  I went to bed just before midnight and slept until around 5:30am when I heard Lucy complaining of pain.  This is so hard...we are in difficult spot when it comes to pain control, too much and we are in jeopardy of suppressing her respiratory drive even further, too little and then she is in pain. Last week when Lucy...

A Bedtime Update...

Thank you so much for all of your thoughts and prayers...I whispered into Lucy's ear  and told her that so many are praying for her .  She is sleeping with heart rates in the 170's to180's, she continues to have a high fever, and her O2 sats are 100% on the Vapotherm.  Lucy girl please keep your O2sats up tonight, mama is tired and needs to sleep and you need to keep breathing!  Dr....

All Pray for Lucy...

Lucy is very sick and is in need of your thoughts and prayers.  This afternoon she went into respiratory distress.  We transferred  her to Vapotherm, a high flow oxygen delivering device, in an effort to help support her respiratory need.  We are all worried, everyone that knows and takes care of our girl is concerned.  Cultures are negative, still.  God please hear...

The view from here...

Lucy continues to be febrile...her temps are around 104, her vitals are all telling of a kiddo with a fever.  She looks sick, is in pain, but is so sweet.   I had our nurse set the alarm limits on her heart rate monitor to alarm when her heart rates are closer to 200, otherwise our ears would be ringing all day long to the sound of Lucy's alarm bells. Our urologist Dr. H came to see...

Fever...

Dear God...Lucy could use a break!!  Currently Lucy has a fever of 103.9...ugh.  Her bladder is draining bright red blood, her urine looks like Merlot.  Cultures were drawn and are in the lab, we are going to start her on antibiotics soon and wait to discuss a plan with the good doc in the morning. &nb...

Two steps forward, one step back...

Lucy is in pain, she is not sick and in pain, instead she is dealing with incisional pain.  This is a very different type of pain than what she has been dealing with.  She is down right grumpy and irritable about the whole thing, but she looks good!  When she woke up from anesthesia yesterday and realized where her pain was coming from she attempted to pull out her new catheter out....

"Super"pubic...

It's in and all went well today, thank you so much for all of your thoughts and prayers!!!  Urine is flowing like a river our of the new14 french Foley catheter that was placed in the stoma(hole) in her bladder.  Dr. H came out of the OR to inform us that things went well and that she discovered bladder stones in Lucy's bladder, a rare and unusual finding, anyone surprised!?!  Lucy is experiencing some pain, but we are staying on top of it with PRN doses of dilaudid.  I am tired and have a sweet baby girl laying on my lap so I will write a more detailed update tomorrow.  

Surgery today...

Lucy is scheduled, again, to have surgery today at 12:45pm to place a suprapubic catheter in her bladder.  She is in better condition this week to undergo anesthesia, unlike last week when she was experiencing apnea episodes as a result of the accumulation of narcotics in her system.  Over the weekend we weaned her down to a lower dose fentanyl patch so that we have room to go up today....

Better days...

It all began yesterday, but I was too afraid to write about it for fear that I would jinx it.   I do believe that we have begun to turn that infamous corner :).  Lucy's lipase is in the hundreds, not eight thousand!  After receiving a blood transfusion on Monday her hemoglobin is WNL - within normal limits and her white cell count is below normal limits, that's her norm.  We turned...

Change of plans...

Apparently Lucy has too much going, anaesthesia doesn't feel comfortable putting her under today.  Along with pancreatitis Lucy is having some apnea episodes that has everyone worried.  We have had to turn down her PCA of dilaudid to keep her breathing as the culmulation of narcotics is too much for our girl. To quote the good doc, "breathing is good not breathing is bad".  We are on...

Surgery again today.

Lucy is scheduled in the OR at 1:00pm today to have a suprapubic catheter placed.  I just finished talking with the anaesthesiologist who will be putting our girl to sleep this afternoon.  The first thing she said to me was, "um...Lucy has a lot going on", agreed!  Yesterday, when discussing Lucy's pain with the GI attending he told me that GI docs refer to pacreatitis as suicidal pain,...

It's beginning to look a lot like Christmas....

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Still here...

We're still here, as in the hospital.  It has been a busy weekend of activities and chasing pain...ugh.  Lucy's lipase doubled over the weekend making pain management even more challenging, not only because her pancreatitis worsen, but pain management over a weekend means you are at the mercy of the on call doctors.  Long story short, Lucy is back on a PCA of dilaudid in addition...

Getting by...

All of the e-cards that you have sent us...we hung a 6th string yesterday! How are we doing?  We're getting by with a little, more like a lot, of help from our friends.  Long admissions, especially during the holidays, are tough.  I am in total denial that Christmas is just around the corner.  I really do wish that all of the decorations would be put away this year.  Selfish,...

Yesterday...

Yesterday was a long day!  The transport team from DuPont came up to get us around 5AM to take us to Jefferson.  Just getting Lucy transferred from her crib to their stretcher took awhile.  All of her fluids and TPN had to be transferred to 60ml syringes so that we could infuse them with syringe pumps during the ride because we could not take the large hospital infusion pumps with us....

On our way "home"

I wanted to quickly update you to let you know that we are on our way back to DuPont.  Things went about how we thought they would go today.  Lucy's bile duct was full of sludge, stones, and to quote the doctor that did the procedure "crap"...nice, huh.  I will update more later about the details. Lucy is uncomfortable and very druged up at the moment, we have had quite the adventure today.

Surgery...

Mommy, kissed me good night at 9:06AM and left me in the very capable hands of the team of doctors and nurses who are going to try and fix my belly.  One of my favorite nurses from DuPont is with me, which makes mommy and daddy feel so much better. At 10:30 they told mommy and daddy that I was resting comfortably but that it was more difficult than they thought it was going to be.  I...

Dear God...

Dear God...It's me Lucy, please watch over me today as I undergo surgery to fix my belly. &nbs...

Details...

Life is in the details... if I wrote about all of the details of our life your head would spin!  My head is spinning this week just thinking about all that needs to happen to get our girl on the road to better. We are a go for tomorrows surgery.  Lucy's fevers have come down since ramping up her antibiotic coverage last night, praise God for antibiotics!  During rounds this morning...

Today...

Today Lucy spiked a fever despite being on antibiotics, as I type this the halls are ringing with the sound of Lucy's heart rate monitor alarming everyone that she is tachacardic.  We increased her fentynol patch dosing and shortened the duration between patch changes to every 48 vs. 72 hours.  Clearly after 14 PRN doses of dilaudid yesterday she was in need of more pain control.  Lucy's...

The weekend report...

As promised here is an update on where things are with our girl at the moment.  She was more awake today than we have seen her in weeks, not only was she more awake but she was less irritable, which is a much preferred way for her to be when she is awake.  She was still very tired, but is such a fighter that she tried everything she could to stay awake as much as possible today. We...

Stay strong...

I'm too tired to write a long post tonight....we have a lot to process, I'll write an update tomorrow.  It is rare these days to see our girl awake, I thought it would be nice to share this photo with all of you.  In case you didn't already know, our girl was born with a double dose of perseverance.   Stay strong Lucy Grace, we along with so many are praying for you. We love you! P.S....

Bear Mail...

Thank you so much for ALL of the wonderful cards, they have been amazing to read!  Our friends in patient relations told us that Lucy backed up the system yesterday :).    Your thoughts, prayers, love, support, and beautiful words of encouragement mean so much!!!! It has been an emotional past few weeks and I have not had the time to let it all out so to speak...until...

Clarity...

Monday afternoon Dr. R came to our room to discuss a finding that one of the GI fellows brought to his attention.  The fellow spent some time looking over Lucy's entire radiology history, and as you can probably imagine it's extensive.  She discovered that Lucy's common bile duct was significantly enlarged, which is a rare but serious concern.  Not only was it grossly enlarged, but...

E-cards...

During our last admission Lucy received an e-card from friends we met here at DuPont who are in our Chronically Cool Families support group, a support group that was started by another amazing family that we met here at the hospital when Lucy was a teeny tiny baby.  Lucy loved getting "mail", she held on to that card all day. http://ecard.nemours.org/welcome.act;jsessionid=dHj2sk77FBkCCpT1kZ-S7Q** The...

An Answer to our prayers...

Be careful what you pray for because you just might get an answer, and that answer may not always be what you want to hear.   Lucy is scheduled to have an MRCP, an MRI of her liver, pancreas, and gallbladder at 2:30 this afternoon.  Please continue to pray for clarity, Lucy's comfort, and that Lucy tolerates the procedure well.  Whenever Lucy and anaesthesia come together we get...

Not much change...

Things with Miss Lucy have not changed much, including her pajamas.  She has barely been awake all day, really all week. When she was, she clearly needed to go back to sleep.  Sadly, she was not sporting the post transfusion glow this morning that we look forward to after she receives a blood transfusion.  She is the color of paste, with freckles and really messy hair.  The...

Sleeping beauty...

Sweet Lucy had a bit of a spa day today, complete with rinse-free shampoo, heated bath wipes, lotion, a blood transfusion, and an extra bolus dose of dilaudid.  We along with so many are praying for a turn around in our girl....