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Home for the Holidays...

December 23, 2012
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.


Let's meet at home...

December 22, 2012

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 time I asked her where we were going to meet in our dreams?  She replied, "Mama, let's meet at home".

Lucy doesn't know this yet and neither do our other kids, but we were given the best Christmas present ever this morning...Dr. R is sending us home for Christmas!!

Her dream is about to become a reality,  Lucy's fever came down early in the morning, along with her heart rates, and her need for vapotherm.  IV antibiotics are doing their job!!!  Lucy is not great, but she is better, and for that we are so grateful.

There are so many people working to make this happen for us today!! We are so blessed to have all of the people in our lives that we have, without them we could never do this.

We'll be home for Christmas, tomorrow!!!!

PS We are not going to tell the kids just yet, we know better, we are going to surprise them tomorrow afternoon when we pull into the driveway.  It will be the best Christmas present EVER!


December 21, 2012

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 on the Vapotherm, she is breathing easier and is not as noisy of a breather today as compared to yesterday, this is as a result of the assistance from the Vapotherm.

Lucy is experiencing some withdrawal symptoms as a result of cutting way back on her pain meds.  When things were going badly yesterday afternoon we had no choice but to decrease the amount of narcotics she had going through her.  We switched her patch to the lower dose fentanyl patch and tried really hard to space out her PRN doses of dilaudid from every two hours to as long as we could.  Lucy is jittery and very jumpy today, but is doing better than I thought she would on the lower doses.  We talked about increasing her clonidine dose to help with the withdrawal symptoms, but today we were on sepsis alert and were watching her closely for any drops in her blood pressure.  Clonidine causes hypotension and when you go into septic shock your blood pressures drop, we did not need any confusion if this were to happen today so we held off on increasing her Clonidine.

Lucy was awake for a few hours today and wanted to play despite her barely being able to hold up her head.  She was and continues to be very out of it.  Tonight, however, her heart rates are lower than we have seen in the past 48 hours, her temps are still there but not as high, and her pain is not quite as intense.  I am hoping and praying that the antibiotics are starting to do their job.  Cultures remain negative, as well as her viral panel, but something is causing our girl to be sick and now that her fevers are coming down after 24 hours of being on gentamicin it is looking more likely that this could be urosepsis.  We continue to have to irrigate Lucy's bladder and pull out blood clots to prevent her suprapubic catheter  from clogging, this causes intense bladder spasms which in turn causes her pain and discomfort :(.

My brother has been with us this week which has been so great for all of us.  He cooks, he cleans, he makes great sushi, and even does laundry too.  He and I had lunch together this afternoon outside in the hall so as not to disturb a sleeping Lucy.  I am hard pressed to remember the last time he and I have had lunch was nice even if it was at a desk in the hallway.  The kids came to see us tonight as it was our monthly family meeting night.  I shared with them that it isn't looking like we are going to be home in time for Christmas...this was so hard to tell them.  Instead I told them that we were going to have two Christmas' one at home and one in the hospital.  Jack asked if that meant that there were going to be twice the presents and without hesitation I said yes...parenting guilt, it's huge!!  In all honesty, I think the biggest present of them all will be that we are all together on Christmas day!

Thank you so much for all of your thoughts and prayers, love and support it means so much to us!!

Our night...

December 20, 2012

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 was having a difficult time keeping her O2 sats up it was because of the accumulation of all of the narcotics in her body, narcotics suppress the body's respiratory drive.  When we woke her up her O2 sats rebounded which was what we expected would happen.  This time when waking Lucy up her O2 sats did not rebound, in fact they continued to plummet.  This is not what we expected.  A stat chest x-ray was order bedside to rule out a pneumonia. Dr. R reviewed the film personally with the radiologist and they both agreed that things looked normal for Lucy.

While the respiratory therapist was setting up the Vapotherm she was asking questions about Lucy's respiratory health, both Dr. R and I said that ironically respiratory function is Lucy's strength.  She is a shallow breather, uses O2 regularly, and has had her fair share of pneumonias, but overall she breaths on her own with little need for assistance, until now.

Our girl is sick and we don't know yet what is making her so sick.  However, there is a suspicion that she could be experiencing urosepsis.  Her body has been fighting hard all of her life, but in particular these past few weeks.  She is still febrile, IV Tylenol is not doing much to bring down her temps, but the combination of Tylenol and dilaudid seem to be helping her pain as her heart rates have come down a bit.

There is a steady stream of doctors and nurses coming in this morning, each relieved that she stayed stable overnight, but all with the same look of concern.  Our girl is a fighter, such a fighter...

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. R came by around 8pm to check on our girl, I told him to go home because he was making me nervous hanging around.   He said he is nervous and told me that he will be available tonight in the event that we need him.  We are adding another antibiotic to her already comprehensive list of meds.  We are concerned that she may have a reaction to this antibiotic so we are pre-medicating her with Tylenol and benadryl just to be safe.    We also applied a Lidocaine patch around Lucy's incision site tonight, hoping that by providing pain relief directly to the site we can cut back on some of her dilaudid use.

None of us are sure what is causing Lucy to be so sick, prayers for clarity are once again appreciated.

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 our prayers...

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 us at 6 this morning to flush the blood clots out of Lucy's bladder.   Yeah, it sounds as painful as it was :(  Toradol causes bleeding in our girl, we know this from past experiences, but I guess the team thought that it was worth trying yesterday.  I sent Dr.H an email around 1am describing what we were seeing in our girl.  Lucy's suprapubic catheter clogged with blood clots last night thus causing it not to drain.  After pulling out some sizable blood clots this morning, Dr. H whisper to me, "no more toradol", agreed!!

I am not sure if I am more tired or more hungry,  that's the kind of week it has been.  Lucy is moaning in pain while she about breaking her mama's heart.   Dr. R came in this morning and said, "this reeks of a line infection".  I looked at him and said, "isn't that what we originally thought when we were first admitted five weeks ago?".

If we stay here long enough who knows what else could happen...just to cover all of our bases we are going to run a respiratory panel on our girl to rule out viruses,  you know since the hospital is the best place to come in contact with germs!


December 19, 2012
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.  

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.  Drew and I were quick to tell her that if she pulled that out she would hurt more, poor baby was not happy.   She keeps telling me, "Mama, it hurts"!  This too shall pass, but at the moment I feel awful that she hurts and that I am once again telling her, "...we are going to try and make it better baby"!  After receiving PRN doses of dilaudid practically every hour after the topical anaesthetic wore off yesterday, it was decided during rounds this morning that we were going to increase her fentanyl patch dose, increase her dilaudid dose, and add in toradol (the IV from of ibuprofen).  Toradol really seems to be helping the incisional pain,  dilaudid is keeping her somewhat comfortable, and the increase in fentanyl will  take a good twelve to sixteen hours to become active in her system.  Distraction isn't helping today, distraction is usually my first choice for pain relief if that doesn't work than I know we are in for it.  We are in for it today!

Lucy is growing EVERYTHING in her g-tube bile culture, apparently this is a first for Dr. R, he has never had a patient grow EVERY type of bacteria and yeast on one culture.  Bile should contain bacteria and yeast, but not the amounts that Lucy has and not all the types that Lucy is growing.  What can I say, our girl likes to stand out, she is a record setter, a true one in a million...What has us most concerned is the amount of bacteria and yeast.  We just finished treating Lucy with three types of very broad spectrum antibiotics and also with a systemic anti fungal to treat the chronic thrush that Lucy is plagued with.  We need to decide what we are going to do about this most recent finding, specifically what we are going to do about all of the yeast.  We are waiting on the specifics of what types of yeast she has growing in her intestinal track.

I am getting anxious as Christmas is a week away.  We are hoping and praying that we will be able to come home for holidays.


December 18, 2012
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...

December 17, 2012

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.  We are expecting Lucy to experience a fair amount of pain after the procedure, but not as much pain as she has just experienced.  In an effort to come back to the floor and avoid the PICU post-op we were aggressive with weaning her off of some of her pain meds so that we have room to go up today. I have to admit that I feel badly that we are going to cause more pain today for Lucy, she is finally starting to feel better.  I realize that this needs to be done and in the long term this is going to be better for our girl, but in the short term she is going to be uncomfortable.

Your thoughts and prayers are appreciated today as our girl undergoes anaesthesia for the third time this month.

Better days...

December 14, 2012
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 off her PCA of dilaudid yesterday and went back to PRN doses, she only required three PRN's yesterday.  We are leaving her fentanyl patch alone for now.  Yesterday she was sporting that post transfusion glow that we so look forward to after giving her blood, today she still has a bit of the glow remaining in her cheeks.  Even better than all of this, Lucy has some of her spunk back!!!

This morning during rounds she wanted to participate, so everyone piled into Lucy's room.  She allowed Dr. R to lower the right side crib rail, this is usually a big NO NO in Lucy's world.  She has learned from her countless hospital admissions that doctors examine patients on the right side of the bed, as a result of this Lucy has a strict rule that the right crib rail must stay up!  If you have any hope of examining Lucy you'd better follow the rules.  Exceptions are only made to those she loves and believes will not hurt her.  Lucy and Dr. R have what I would describe as a love/hate relationship, she loves him but hates when he has to do stuff to her and vice versa.  Last week Dr. R was getting on me to moisturize Lucy's feet, she was clearly not in the mood to have this done.  Although she needed this to be done because her skin has cracked from all of the edema,  I was choosing my battles carefully.  I had to replace Lucy's Foley catheter and give her an injection of Risperdal, moisturizing her piggy toes was at the bottom of the priority list.  I told him if he wanted it done to do it he did.  He took half of a jar of Aquaphor and literally coated her feet with it, and then proceeded to complain to me that he could not wash it off.  Seriously, I should know better than to allow him to do stuff to her :).  Back to this morning, after allowing him to lower the crib railing she then asked him to put lotion on her feet.  He practically fell to the ground and then told the resident to, "order a head CT stat, something is wrong with Lucy she is being cooperative".

Getting better is exhausting!   


Change of plans...

December 12, 2012
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 the schedule for Monday :(.

Surgery again today.

December 11, 2012
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, telling me that it is the worst GI pain.  I can not imagine that type of pain, but looking at my girl I agree that this is awful.   Nephrology was consulted yesterday to help us try and figure out a cause for Lucy's hypercalciemia.  We attempted to add a smaller amount of calcium back into her TPN over the weekend and immediately Lucy's levels shot up.  We are continuing to pump our girl full of fluids not just to flush the calcium out of her body, but also to help control the inflammation in the pancreas.  Lucy is so puffy, it is like we attached a garden hose to her central line and left it running for the last month, yep that's just about right.  She is positive almost three liters of fluid during this admission, her skin is so stretched it hurts to touch her.

We have finally achieved a level of pain control that is keeping Lucy somewhat comfortable,  anymore pain meds and she will be sedated.  We are ok with this for now as we are about to make things worse by punching a hole in her bladder today.

Many of our mito friends are struggling at the moment, please say a pray for all of these little heroes of the medical world.  I will never understand the suffering, but I have faith that God has a plan.

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

Still here...

December 10, 2012

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 to her fentanyl patch.  I am going to take the high road and just say that it was not easy to come up with this plan, and I hope that our experiences can help make it better for others who are in a similar situation as ours, having a child who lives with chronic pain coupled with acute pain.

Lucy had a little breathing episode while sleeping that had us all scared on Friday afternoon.  Her O2 sats fell into the low 80's and would not rebound even on five liters of O2.  Fear and concern ensued, but after waking Lucy up and arousing her her numbers rebounded nicely and we were able to turn down her O2 to her usual one liter, just in time for Dr. R to come by and see our girl.  Ever since Friday we have been watching Lucy's O2 sats like a hawk.  She has had a few very brief episodes where she has gone into the 80's but rebounded on her own.  In any case Vapotherm is on standby in the corner of her room, in the event that she needs it.

Lucy is scheduled to have surgery on Tuesday to place a suprapubic catheter in her bladder.  This surgery is so necessary now, but of course we are concerned about the risk of anaesthesia again.  Ideally we would have liked to combine this surgery with the surgery to remove her gallbladder, but we are not certain when the gallbladder surgery is going to happen and we can't wait another few weeks, this needed to happen yesterday.

I went from avoiding Christmas to embracing it this weekend.  I had lunch with a friend on Friday who remind me that no matter where we are we need to embrace the holiday.  Thanks for the reminder, I needed it!  The kids and Lucy decorated a gingerbread house on Saturday to enter into the annual gingerbread house contest they have here at the hospital.  It was fun to be able to do this as a family, all of the kids participated in the decorating.  I think Sophie may have eaten more candy than she decorated with, she left here Saturday night with a tummy ache.  We opted not to get fancy with our design, instead we went with the more is merrier idea and decorated our house with a mosaic design all made out of different candy.  I looks awesome and smells so good, if I do say so myself.  Thanks Heather for gathering all of the supplies and candy for us!

Drew and the kids brought us a real tiny Christmas tree that we have decorated with various homemade ornaments and ornaments that people have brought her while here at the hospital.  It brings joy to not only us but to everyone who comes into our room.  Our special friends Andy and Faye, Andy is one of the docs here at the hospital but not one of Lucy's docs, came and stayed with Lucy tonight for a few hours so that I could go home and decorate our tree at home with the kids.  I have never gone home once while Lucy has been admitted to the hospital ever, now I know why.  I cried the entire way home and the entire way back, tears of joy and sadness because I know that we need to celebrate the holiday no matter what the circumstances.  It was so hard to leave Lucy tonight even though she was in very capable hands, and it was equally as difficult to leave the kids/home tonight and return back to to the hospital.

We had the honor of meeting the "real" Santa today, the one in the Macy's Thanksgiving Day Parade.  At first we were not sure if we were going to be able to have Lucy see Santa as he was only going to the meet children in the child life center.  Drew went down to assess the situation with the other three kids and came back to tell me with tears in his eyes that we HAD to take Lucy to see him,  that he was the "real" deal.  A little background, we have always wanted to take Lucy to see Santa at Christmas time but never have for a variety of reasons.  Last year we attempted to take Lucy to see Santa at a local community event that was close to home, when we arrived Drew and I were appalled at how unrealistic looking this Santa was and knew that there was no way that we were going to be able to pass this guy off as the "real" Santa.  I was a bit emotional and perhaps a little unrealistic myself over this, but I wanted to have the memory of my baby girl meeting Santa for the first time.  We never had another opportunity for her to meet Santa last year so fast forward to this year.  Drew and I were speechless when we saw Santa today, partly because if we attempted to say anything tears would have flooded from our eyes, and also because this Santa was the "real" deal!  We saw all of our kiddos gaze at him with wide eyes, even our eleven year old.  Jack noticed the tears in our eyes and latter on said, to us, "that really was the real Santa...huh mom!?!"

Getting by...

December 7, 2012

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, I know, I love Christmas decorations, love, love them, just not this year.  I guess it's a good thing that we have been staring at the same four walls for weeks on end, there is nary a Christmas decoration in sight, except for the few things Lucy has made.  I don't have the energy to focus on all of the "stuff" that accompanies the holiday, but I do have in my heart the meaning of season, and am so grateful for the true meaning of Christmas.

We hung this on the door...just in case Santa walks by :)

Medically speaking, Lucy is dealing with full blown pancreatitis, her lipase is close to 4000!  For those of you who know these lab values, this is insanely high!  In other words, she is in a lot of pain:(.  We have shortened the time between her scheduled doses of dilaudid in addition to changing her fentanol patch every 48 hours.  This combination has kept us on top of her pain for the most part, she only required a few PRN doses of dilaudid in between scheduled doses yesterday.  The amount of pain meds that our girl requires is "impressive", everyone keeps telling us this!  We know her body metabolizes meds differently, but if you or I were on what Lucy is on we would be out cold until the year 2014!

So much love...

Lucy's bladder issues are huge, we are not sure we are going to be able to wait until her next surgery to fix them, they are that bad!  Lucy's bladder spasms are awful, we can not keep a catheter in place, unless we use a Foley.  The Foley balloon is irritating the urethra thus causing more spasms.  Her urine is full of sediment that keeps clogging the catheters, requiring us to change her Foley every couple of days.  In fact, while we were up at Jefferson this happened to Lucy.  After her procedure we noticed that her Foley bag was not as full as usual, and that her bladder was distended well over her belly button.  We tried flushing her catheter , but it was clogged, nothing was able to go in or come out.  We had no other choice but to replace her Foley.  Lucy has a large hypospadis, tear of her urethra, that makes cathing extremely painful and difficult, this will never heal as long as she has an indwelling catheter going into her urethra.   Our urologist came to see us yesterday and she is recommending that we move forward with the suprapubic catheter placement sooner rather than later, as in next week.

Friends young and furry...

We are taking things one day at time, I really can't think much further into the future than that.  We want to thank all for your thoughts and prayers, love and support.  We love hearing from you and visiting with you.  Sorry we missed you yesterday Kristina and Emily, she loved her Elmo balloon and ladybug :)
I love my daddy!


December 6, 2012
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.  Lucy watched everything with wide eyes, she looked scared but was so brave.  The transport team was so kind, chatting with our girl to help make her comfortable with all that they had to do.  Our night nurse prepared everything that Lucy would need med wise and supply wise to get through the day yesterday, her preparation was amazing, she thought of everything!

When we arrived at Jefferson we had to do the usual paperwork stuff which went quickly since we arrived late and they were anxious to get Lucy into the OR on time.  We met with the anaesthesiologist and doctor who was going to be preforming the surgery.  They were very kind, listening to all of our girls ridiculous requests for blood pressure cuffs for her baby, blue sticky notes, a blue pen...and the list went on and on.  They were amused, thankfully, and very accommodating.  The doctor explained to us that he was going to insert a scope down through Lucy's esophagus, through her stomach, into the opening of her small intestine where he would make a small incision to access the common bile duct.  Once in there he was going to decide whether or not he was going to place a stint.  His hope was to be able to dilate the bile duct and not have to place a stint.  If he did have to place a stint than Lucy would need to come back to have the stint removed in the next month or so, his hope was to not have to put her through this procedure twice.  


There was some difficultly accessing Lucy's common bile duct, this is what took them the longest.  Her gj-tube had to be pulled in order to make room for the scope.  The scope was big, they don't make pediatric scopes, but he told us that he had performed this procedure in a baby as young as 11 months old.  Once it was in position, they discovered that her common bile duct was huge 15mm, "the largest dilation he had ever seen!".  When he opened up the stricture they discovered at 7mm stone, lots of sludge, sediment, and "crap" his words not mine.  He explained to us that he felt that Lucy's issues were likely as a result of her severe dysmotility.  He was successful in dilating the stricture and cleaning out her bile duct without having to place a stint.  He was uncertain if her bile duct would shrink back to down to normal size, but he felt confident that the dilation would hold, as the stricture was not a result of a tight muscle, and that she would be able to drain bile once again.

Once awake Lucy was irritable and in pain, she was transferred to the PACU where we waited for a few hours for the transport team from DuPont to pick us up and bring us back.  We were able to keep Lucy on track with her med schedule because the amazing nurse we brought with us from DuPont was allowed to go into the OR with our girl and infuse all of her meds all the while they were working on her.  This was a huge blessing because as you know we run a very tight med schedule.

Once we arrived back at DuPont around 4PM we met briefly with Dr. R.  Her ordered lab work and assessed our girl.  I showed him the report from the procedure complete with pictures, told him that we needed to increase her pain meds as she was clearly in more pain, and then headed down to IR to have a new gj-tube placed in Lucy.  This was a tough ending to a long day, Lucy was in pain and uncomfortable from not draining much out of her belly all day.  We were able to place the tube with some effort but not too much difficultly, and then came back upstairs to rest.

Lucy was running a slight fever most of the day yesterday, we really didn't need to know what her exact temp was as we were already doing everything we could possibly do to treat a fever.  Lucy's lab work came back telling us that she now has pancreatitis, this was the biggest risk of doing the ERCP.  There is not much we can do to treat her pancreatitis, all we can do is provide pain relief.  After coming up with a pain plan for the night, I was able to go to sleep and sleep peacefully, really I did,  knowing that we were going to stay on top of her pain.

Thank you so much for your love and support, thoughts and prayers.  We could really use a break today from all of the medical chaos.

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.


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 think my mommy is a wreck, but she is strong just like me.  It's a good thing that daddy is with her.  Please keep praying.

Dear God...

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


December 5, 2012

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 Dr. R told me that we would continue her on Vancomycin as he suspects that the bacteria that is causing her cholangitis is not being covered by just Cefepime.  This means that about half of our daily med schedule is now taken up with just infusing the Vanco.  Miss Lucy has a bad case of Red Man Syndrome which means that we need to pre-medicate her with IV benadryl and IV Tylenol thirty minutes prior to infusing the Vanco, then we run the Vanco infusion over two and a half hours.  All of this is in an effort to keep her airway from swelling shut and turning her into a tiny red tomato.  The risk is worth the benefit, however, as we run the risk of Lucy getting sepsis if we don't control the bacteria.  We have six points of access coming off of Lucy's central line, even with all of that we are running into issues, mainly compatibility issues with which meds can be run with her TPN and which meds are incompatible with her TPN.

Our day consisted of working out ALL of the details for tomorrows about a logistical nightmare.  I have faith that everyone will do their job well and have Lucy's best interests at heart.  We are going to be transporting Lucy to Thomas Jefferson Hospital in Philadelphia via ambulance.  I will be able to ride with her, along with the transport team, and one of the wonderful nurses from the floor.  Drew will follow us in our car.  This afternoon I spoke with the nurse who will be in charge of our girl once we arrive, she seemed like she had been well informed about our special girl.  She calmed my nerves a bit by telling me that they were looking forward to meeting Lucy and her wonderful family and that they take extra special care of their littlest patients since Jefferson is not a pediatric hospital they try and go above and beyond.  Lucy is scheduled in the OR at 8:30am.  I'm not sure how long the procedure will take, but Dr. R said that as soon as they could wake her up they were going to work at transporting her back "home".

Our wonderful night nurse has the massive job of getting all of Lucy's meds and supplies ready for tomorrow.  We are taking everything we need with us including packed red cells in the event that she needs them.

Many of the people who know and love our girl, who work along with us to give her the best life we can possibly give her, have come by to see Lucy and wish us well tomorrow.  It means so much to know that so many care!  We are nervous, the unknown is the worst part of this journey, but we have faith.  Thanks for your love and support, thoughts and prayers they mean so much.


December 4, 2012
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 line decided to give us grief today when it did not want to draw back any blood for lab work this morning.  It progressively got worse throughout the morning, her pumps kept alarming "occlusion patient side".  We TPA'd (yes, this is a verb in our world) her line this afternoon to get things flowing again.  This evening her temps went even higher along with her heart rates which meant a stat EKG was ordered.  We started our usual fever protocol and ramped up our antibiotic coverage all in an effort to bring down her fevers. I think we are now running a daily med schedule that is longer than 24 hours, how is that even possible!?!  Lucy is scheduled for surgery up at Jefferson in Philadelphia on Wednesday morning at 8:30am, we'll just have to see if that will happen now.  Ugh...

The weekend report...

December 2, 2012

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 are continuing to pump Lucy full of fluids, followed by three doses of lasix daily, and multiple infusions of albumin, all in an effort to flush the excess calcium out of her body.  Her levels are coming down, but still not low enough to where we can cut her fluid rate back to her norm.  She is so very very puffy, her feet are so swollen that it is difficult to separate her toes enough to wrap her pulse ox probe around her toe.  The extra doses of lasix are causing her acid base balance to be thrown in her body, she is experiencing metabolic alkalosis as a result of this.  We are noticing that as Lucy's calcium levels start to come down so too is her irritability and lethargy.  We are continuing to search for a cause for her hypercalciema.

Pain continues to be an issue :(.  Lucy is requiring more PRN doses of dilaudid in addition to the fentanyl patch.  I have a feeling that the fentanyl patch is wearing off prematurely, all patch medications seem to do this with our girl.  It is just the way her body metabolizes these types of meds.  Pain team is being brought in to help us with these issues.  We are going to need to set up a plan for Lucy post operative.  Here's hoping that we can keep our girl as pain free and comfortable as possible.

Today we finally heard back from GI.  We have a date for her surgery at Jefferson, it is scheduled for this coming Wednesday.  Several have asked us why the GI doc could not come here to DuPont to do the surgery.  There is specialized equipment that is needed to preform the procedure that is not available here at DuPont.  Otherwise, I agree it would be a lot easier to grant a doc special privileges for a day than to transport Lucy to another hospital.  We'll discuss the details of all of this on Monday.  Now that we have a date for the surgery, I admit that I am nervous for our girl.

Lucy is going to require a second surgery after she recovers from her first to have her gallbladder removed.  This procedure is complicated by the fact that it will most likely not be able to be done laproscopicly.  While she is under for that procedure we will have our urologist place a suprapubic catheter in Lucy's bladder.  Lucy has had an indwelling catheter for too long, it has damaged her urethra and as such it is causing her a lot of pain in an area of your body where you don't want to have pain, ever.  Poor girl, she just can't seem catch a break right now.  Six months ago this would have been a difficult decision for us to make, today it was quite simply a quality of life decision.

It is December, already.  I am avoiding all things Christmas at the moment, let's just see how long that will last.  My mom is coming to help us next week with the kids, we are all looking forward to that.  The kids are craving a sense of routine during the week,  my mom is very good a providing that for them, and quite frankly for me as well.    

The kids and Drew have been by to see us every night since Thursday, gosh do we ever miss them!   Both Megan and Sophie lost a tooth here last night, Sophie has a big toothless grin and Megs has a big gap in the side of her smile.  Good thing we have a lot of soup at home.

Speaking of home, when Lucy went to bed I asked her where she would like to meet in our dreams...tonight she said "home".

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

Stay strong...

December 1, 2012
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. Thank you so much for all of the wonderful cards, we have close to 200 hanging in her window!!  I have read each and everyone to her!  

P.P.S. Thank you Auntie Amy for sending her the moon and the stars, it gives her an incentive to open her eyes.