Friday, July 26, 2013

Quickly...

A quick update to let you know that our IR team was able to place a new tube back in Lucy's gallbladder! Everyone, and really I mean everyone, is so surprised that it went back in.  Thank you God for another answered prayer! I was told that it was tight and very tiny, but they were able to dilate her stoma and suture a new tube, the same type of tube, to her skin.

Our IR doc has had many extensive conversations with our surgeon about our girl, in particular her bile duct issues.  In fact she called him on his vacation to let him know what had happened to Luc and asked him his opinion about what he wanted to have done.  Yeah we know, we are so so blessed to have the medical team/family that we have!  If Dr. K couldn't be the one to replace the tube then the person I trusted the most to do it was her.

Lucy is sore, and tired, but she is sleeping peacefully.  We are making plans to go home tonight, we can manage her pain at home.

Thursday, July 25, 2013

The long and short of it...

The long and the short of it is we waited all day to get an IR time slot and we did not get one.

That pretty much sums up our day.

That and Dr. R (I was wrong he is on vacation starting next week :) came by this afternoon to discuss "what if" scenarios with me.  What if we can not place another tube?  What if we have to repeat the gallbladder tube surgery to place another tube?  Would we be willing to take that risk again?  What if when attempting to place another tube bile and bacteria from her biliary track leak into her interstitial tissue in turn making her very sick? What if we learn even before attempting to place a new tube that there is fluid that has leaked around her stoma site?

What if...these are all difficult questions that Drew and I need to consider.   Tomorrow morning we are going to do an ultrasound around her tube site area.  We are specifically looking for fluid.  We started Lucy on IV bacterium today to cover the unique gram negative bacteria she grew on culture last week.  This particular bacteria is only susceptible to bacterium, bacterium has proven to be a difficult med for our girl in the past.

The catheter that I originally placed to hold the stoma in place came out this afternoon.  Oh the drama!  We replaced it with another one, only this time we could barely get the tip of it in her stoma.


We were told that Lucy has a procedure time of 3pm tomorrow.  Apparently the delay is due to the fact that Lucy needs to go under general anaesthesia, and anaesthesiologists are not in abundance at the moment.  Surgery came by tonight, I think they are going to try and move things up for Lucy in the morning.


I am wiped, I have not slept since Tuesday night, Lucy too is wiped despite sleeping most of the day.

Today is one of those days that go down as frustrating!

Tomorrow's another day!

Oh, our life...

Our life is not for the faint of heart, or for those who can't pull an all-nighter, or several all-nighters in a row!!!

While changing Lucy into her pajamas tonight at 10:45pm we noticed that her gallbladder tube had pulled out!!!



When did this happen, we are not sure.  Her stoma, or hole, where the tube came out was practically non-existent.  Knowing what I know about stomas, we quickly thought of the smallest sterile tube we had on hand (an 8fr urinary straight catheter) and pushed it oh every so gently but with a little force into the hole so as to try and keep it from closing entirely.  One of our fears is that there really is no stoma tract to her gallbladder and the catheter that I placed to keep the hole open is just holding a hole open to the inside of her body, but not necessarily to her gallbladder.

I called the on call service, however our beloved Dr. R is on vacation go figure.  Lucy has an uncanny knack for needing him whenever he is on vacation.  It was quickly decided that we needed to get to the ED.  Surgery has been consulted, and we are waiting for a bed upstairs.

Irony of all ironies before we left the hospital on Thursday we met with our surgeon to discuss Lucy's gallbladder tube.  He kept saying over and over how he can't believe that the tube has not fallen out yet...you want to bet he's going to be eating his words!

Thursday, July 18, 2013

We're going home!

We are making plans to go home this afternoon!

When we were admitted last week I told our main doc that we needed to get home by Friday, we have some serious partying to do this weekend. We are throwing my grandma a 93rd birthday party and most of my family is coming for the weekend!  Dr. R said it wasn't up to him when we were going home and said to talk to Lucy about it :).  Well, she listened!

Lucy's labs are stable and our girl is holding her own.  Pain is still an issue with her new gallbladder tube, we are negotiating with our surgeon as to what our options are for our girl.  For the moment we have her new tube draining to gravity, we want to see how that works before we go and make any changes.  We can monitor all of that and manage Lucy's care from the comforts of our own home, so home sweet home we come. 

Once again our wonderful infusion company is working fervently to get us everything we need delivered to our home and to the hospital so that we can go home and resume living!  It takes a village and we are so very very grateful for the people in ours!  

Tuesday, July 16, 2013

A quiet day...

Lucy slept a majority of the day today, which is exactly what she needed.  Her labs are not too bad, pancreatitis does not appear to be an issue.  We stirred the pot so to speak as Lucy's white cell count is elevated for her, we switched antibiotics last night so here's hoping that they do their job and keep the infections at bay.

Pain decreased throughout the day thankfully.  Lucy does, however, continue to complain to us that her gallbladder tube hurts her.  We are still negotiating with our team as to what are options are for our girl.

Lucy's cultures grew a very rare gram negative bacteria form her gallbladder tube drainage, anyone surprised, we are waiting to get the susceptibilities back to see if we are going to make any more antibiotic changes.

We had several visitors today, some tiny babies and some furry friends.  My phone and computer are not playing nicely together tonight or I would show you some of the pictures from our day.  Drew and the kids came for dinner tonight, it was so nice to just be together.  Everyone looked so tired, here's hoping for a good night sleep.

Thanks as always for your thoughts and prayers, love and support.

Deep Breath...


After a very long and trying day, we are back in the comforts of our "home away from home", another prayer answered!  When we learned from Dr. O that the stent came out with relative ease you could almost see the huge weight of relief come off of our chests.  We took a deep breath, and have been breathing just a little easier ever since.

We have learned to plan for the worse and hope for the best, its just they way things happen in our life.   Our preparations paid off once again, bumps happened along the road all day today, but miracle of all miracles we were able to keep Lucy on med schedule including arriving back at DuPont in time to change TPN at 8:30pm!  Those of you who have had the pleasure of assisting with Lucy's care have to be amazed by this cause I know I am :).

Lucy's pain has increased as the night has gone on, we are going to do our best to try and stay on top of it throughout the night.  Labs are ordered for the morning, we are going to be monitoring her closely for pancreatitis.

I really want to shout out to all of you who have helped our family during these oh so many trying times and say a very heart felt thank you!  Thank you for loving and caring for our family like you do, and for taking care of our children like they are your own.  Thank you for all of the meals and groceries, and for offering to do what seems like the smallest gestures that make such a HUGE difference in our everyday life.  We thank you for your love and support, thoughts and prayers!  We could NEVER do this alone and we are so very very thankful that we do not have to.

Monday, July 15, 2013

It's out!

So good news, the stent came out with relative ease, so very very thankful for that!

Dr. O was quite pleased with how things went, he even managed to maneuver the scope around her GJ tube leaving her tube in place.  We were fearful that Lucy would restenosis immediately upon stent removal, that did not happen.  Her bile duct stayed open and is draining, for now.  We are not expecting it to stay this way forever which is why we have a drain in her gallbladder.

Lucy is comfortable and sleeping like a doll baby.  We are waiting for our transport team to come and take us "home" where she will recover where everybody knows her.

Drew and I are sitting quietly by Lucy's bedside typing away on opposite sides of her bed.  Every now and then we look up simultaneously and just smile.

Thanks again for all of your thoughts and prayers, love and support.

She's sleeping...



All of our preparations are paying off, our day has only had a few glitches...

Aah...I had to give away our first born this afternoon in order for us to keep one of the infusion pumps we took from DuPont, sorry Jack.  I asked if they wanted Lucy instead, but they told us that she's a little bit too complicated :).  Don't worry I have the pump in my possession so we can keep Jack :).

We kissed Lucy goodnight at 3:00pm and will hopefully see her in about an hour.

Thanks for all of your thoughts and prayers, love and support.  Our prayer is that at the end of the day our girl will be "home" safe and sound.

Have faith...

Everything is going to be alright...I have to keep reminding myself of this, and also to breath.

Tomorrow is going to be a very loooong and trying day, I know this from previous experience. DuPont transport is coming to take us to Hopkins sometime between 7:30 and 8:00 am.  Lucy's procedure time is scheduled for 2:00pm.  Lucy is excited to ride in an ambulance again, they have movies and will turn the sirens on for her.  I'm not sure she really remembers what's going to happen once we arrive.

Our weekend was spent prepping everything we could possibly need to transport our girl to Hopkins.  Pre-surgical labs were done, and a transfusion of packed reds cells was given this afternoon.  Twenty-four hours worth of meds and supplies are being packed up as I type this, and a pile of medical records and paper work have been printed for everyone's reading pleasure.   After having done this a few times already we kind of know what we are in for.  Let me just say that the adult world and pediatrics, two totally different worlds!

Sometimes I wonder if knowing all that I know is a good thing...what I do know is that it makes me a better advocate for our girl.  I will continue to have faith that no matter what, everything is going to be alright.  

Sunday, July 14, 2013

Moments...


No matter where we are, I love moments like these.  
Friday night movie night in Lucy's room, Megan was at her friend's house last night.  Jack was so happy to be able to lay next Lucy, normally it's Megan or Sophie who win that position, but mostly Megan.  Not last night, Lucy wanted Jack.  
Oh how I love these kids!

Saturday, July 13, 2013

Today...


It's finally quite in room 7 tonight, dare I say even a bit serene.  Lucy's music, which we loop 24 hours a day wherever we are home or in the hospital, is playing in the background.  The sound of her oxygen humidifier bottle sounds like a zen like fountain, the suction white noise is even soothing to not just her but me as well tonight, and for the first time in days I can take a deeper breath.

Lucy remains fever free, and as long as she does our plans are to transport to Hopkins on Monday morning so that she can have her stent removed via ERCP.  The risks with stent removal are the same as with stent placement, with one exception, if the stent has become embedded in the wall of the bile duct and won't come out.  We are going to pray for that not to be the case!  If all goes well we are planning to transport back to DuPont sometime after her procedure where she will recover in the comforts of our "home away from home".

There has been a lot of talk about replacing Lucy's existing gallbladder tube with a softer more flexible tube.  Lucy is consistently complaining that her "new tubie" hurts.  It is a bit stiff and rigid and as such it is pulling and very sensitive to movement.   Changing her tube is something that we knew would need to be done, but it's also something that she will have to be put to sleep for and as such it makes it a bit more complicated.  We will evaluate where she is at next week post stent removal and come up with yet another plan.

I am looking forward to sleep tonight while the wonderful nursing staff take care of our special girl for me.  They are going to do round two of TPA tonight (last night was round one) and go after the other lumen on her central line.  Things are building up inside of her lines causing occlusion alarms on her pumps.  We can not afford for he life line to stop working, therefore we are quick to respond to any slowing.

Thanks for all of your love and support thoughts and prayers, we could never do this alone!


Thursday, July 11, 2013

The Plan...

We went to clinic on Tuesday to meet with our main doc to discuss the plan for stent removal.  The plan on Tuesday was to be admitted on Sunday to DuPont so that we could get Lucy prepped for transport to go down to Hopkins for stent removal on Monday.

Apparently Lucy misunderstood the plan...She thought that she would move things up a bit and get herself admitted on one of the busiest nights of the year.  Yeah, last night was crazy!

Lucy slept pretty much all day, I have not slept since Tuesday.

We are not sure why Lucy had a fever yesterday, it could be one of many reasons.  In the end we concluded that her stent needs to go.  Good thing we have that scheduled for Monday :). 

Wednesday, July 10, 2013

Any guesses where we are?


Fever, increased abdominal pain, tachacardia...yep, something's up!

Cultures and labs are done, we are just waiting to get a bed upstairs.

We need to get to the bottom of this soon, Lucy is scheduled for stent removal at Hopkins on Monday.