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...

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...

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'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...

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...

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...

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...

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...

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...

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 kid...

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...

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...

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 Monda...