Today...

Today, we took part in a promotional video for the hospital this morning.  Of all mornings, Lucy chose today to sleep in.  We had to wake her up just before 9am because the CEO of Nemours and the president of the hospital were waiting outside of Sleeping Beauty's room to come in and film/take some pictures.  It all went well, which I am so very thankful for because when it comes to Miss Lucy you never know how these things are going to turn out.  It didn't hurt that the two big wigs gave her a large pack of Post-it notes when they first introduced themselves to our girl(thanks Maggie for setting them up for success :).

Today, we weaned Lucy off of the PCA pump this morning because she only has a mild case of pancreatitis, wonders never cease!

Today, we took a trip down to interventional radiology (IR) to replace her low profile GJ button with a longer GJ tube.  The doctor at Hopkins replaced Lucy's long GJ tube with a low profile GJ button when he did her procedure thinking he was doing us a favor...no thank you, we wanted our long tube back.  Good thing we did this as her J-tube had migrated out of her jejunum and into her stomach, it was like a deja vu all over again.  Poor Lucy she was not in the mood to have to go through a prolonged tube change.

Today, Drew and I had a difficult but good talk with our palliative care social worker and our surgeon this evening.  We are so blessed to have so many wonderful people in our life who truly have Lucy's and our entire family's best interests at heart.

Today, I had a dozen or so e-mails that I should have addressed, but didn't.  I chose to watch last weeks episode of Scandel instead (thanks Jen for getting me hooked on the show:).  It took me twice as long to get through the episode because there were numerous streaming delays.  Sadly, I didn't mind the delays, I have a lot on my mind at the moment and in an effort to try and process it I need to get away from it.  Can you relate?

Tomorrow is another day...

Not too bad...

That is our girl is not doing too badly.  Her labs are indicating that she has pancreatitis but it's not as bad as it could be.  We have NEVER been on top of her pain, never, but it appears that we are doing a fine job of keeping on top of her pain for the time being.  PCA's are a good thing, when they work.  Wonders never cease when it comes to Miss Lucy, what you expect to happen doesn't and what you least expect will.  We'll see what tomorrow brings, as for today, aside from being a wee bit more irritable than her norm this morning, it's not too bad.

Lucy's PCA above...Baby's PCA below

Whatever Lucy has, Baby needs too!  Thanks to Darci for making the most realistic looking cardboard PCA pump for our Girly's baby doll this morning.  The buttons even feel squishy when you push them thanks to some kind of tacky substance placed underneath them...brilliant.  Um yes, Baby also has an NG tube, in addition to a triple lumen central line,  urine catheter, an IV.... play imitating real life, enough said!  

There are so many things swimming around in my head tonight.  Our expectations with Lucy's stent placement are very different from what is our reality.  Tonight I am not going to go into detail about the situation, I need some time to process everything.  The good doc will be back at DuPont tomorrow after saving the world for the past two weeks.  In case I haven't mentioned this before, he is an amazing doc who just so happens to want to share his gifts and talents globally.  I asked Lucy if she has missed Dr. R, her answer "yes, but not really" :).

Just wanted to let you know...

We arrived back safe and sound to our "home away from home" this afternoon.  We are tired and relieved to be back in familiar surroundings, familiarity breeds comfort, and comfort means more sleep for the mama tonight :).  Meds, TPN, and fluids are all up and running and on schedule.  Pancreatitis has set in just as we expected it would, we are staying on top of her pain with a PCA of dilaudid in addition to her fentanyl patch.  I want to say thank you for all of your thoughts and prayers, love and support it means so much to know that so many care!  

Getting ready to go...

We are hanging out waiting for our transport team to come and take us back to DuPont, they should be here sometime before noon.  Lucy is feeling a little better this morning, pain is not as intense, and no more vomiting. 

We played catch up all night with Lucy's meds.  In other words, the mama didn't get much sleep.

Unfortunately, we had to make many compromises when it came to meds and TPN, there was an error on behalf of the admitting team here which meant that TPN wasn't ordered in time for our girl.  Their pharmacy had to mix up a special bag of dextrose with additives, as well as remake many of Lucy's meds to be the correct concentrations.  Hind sight being 20/20, I think we would have been better off transporting back to DuPont in the middle of the night.

 Sleep has been sparse, and caffeine abundant.

I'm looking forward to nap time this afternoon.

We Aren't in Kansas Anymore...

I suppose if we were we would be covered in snow at the moment....but you get my point.  We are missing our "home away from home".  This adventure has been challenging on every level!!  Thank God I have the skill set that I do, and that Drew is with me to keep me clam!!  Our girl is sick, she is not feeling well.  She is in pain and has been vomiting for the past hour.  We have also been waiting for a diaper for the past hour, we thought of everything today, except for diapers.  I assumed that they would have some, you know the saying never assume anything...

We are going to hang a PCA pump for our girl tonight, I hope that this can happen for her soon.  Please pray for comfort and peace for our girl and that Hopkins can handle the level of care our girl needs and deserves.

Stent is in...

The doctor was able to place a stent in Lucy's bile duct, quickly.  The entire procedure was done in just over an hour.  He came out and told us that Lucy had a significant fibrous stricture with lots of scar tissue.   When I asked him about the debris found in her bile duct, he said very politely in his Nigerian accent, "Oh yes, you are Americans you always want to know how much :)".  The only way to keep her bile duct open was to place a stent.  Lucy is in the pediatric recovery unit, awaiting admission to the peds floor.  She was quite uncomfortable after her procedure, but was given a hefty bolus dose of fentanyl to help make her comfortable.  

Johns Hopkins...

When I woke this morning my prayer was simple, "God please give us ALL the strength to endure everything that we will have to endure today... "

Lucy did well during the transport, the transport team did well too.  They only had to infuse about a half dozen meds :O during the ride.

Luc watched her beloved Doc McStuffins, and had the transport team drawing pictures for her along the way.

We arrived at Hopkins around 11 and....

found our way to the GI suit...

where we proceeded to introduce Lucy to the nurses and doctors here.  Lucy was not really interested in meeting anyone, she preferred to talk with her daddy instead.

Our girl has been a bit anxious today, who can blame her, she wanted to sleep in a crib not a bed...

Once they found her a crib, she wouldn't let anyone in to exam her...remember my prayer this morning,  I sent up a reminder prayer just in case God forgot.

Some mamas rock their babies to sleep, I gave ours Propofol.  I left Lucy in the hands of the team of docs and nurses here at 2:25pm.  They are planning on placing a stent, if her anatomy allows.  

All of our preparations have paid off, we are so so grateful to our team of docs and nurses at DuPont, without them this day would be even more difficult!  Thanks Maggie and Meredith for the tutorial on how to use the Medfusion 3500, and for the PB&J lunch packed in bio-hazard bags :).

Thanks for your thoughts and prayers, love and support!  I will post an update later on today to let you know how things went.