Our home away from home...

We have been admitted to "our home away from home" yet again, and so close to the holidays.

What is it with Lucy and being in the hospital for the holidays?

In case you've lost count, there are only 8 days remaining before Christmas, 8 days!

Here's hoping for a miraculous recovery for Lucy, and also that UPS pulls through for us.

Lucy has a pretty severe case of pancreatits as well as an infection somewhere.  Where, we don't know that just yet.  There is some speculation that it could be in her urine, her urinalysis looks suspicious.   There is also a fear that she has bacterial pancreatitis, meaning that it's an infection in her pancreas that is reeking havoc on our girl.  It could be both... or something else...you never know with Lucy which is why we are here.

Lucy's white blood cell count is very elevated for her, this has us all scratching our heads because she has not elicited a fever from all of this.  This is not the first time we have seen her do this, she had sepsis in September without a fever.  We made another change to her antibiotic coverage, ramping up our gram negative coverage.

(Poor baby would not let go of the bucket, she's even sleeping with it tonight)

Pain control was priority number one when we arrived to the hospital at around 4:45am!  Lucy was in so much pain it literally made her sick.  Vomiting is not something Lucy does often, nor is it something we want her to be doing.  She doesn't have the muscle strength to bring it all up or move her own body to get it out (sorry to those of you who are weak in the stomach), we worry that the infected bile that she is vomiting is flooding her lungs which can potentially cause an aspiration pneumonia.  Poor baby struggled until we got on top of her pain.

(Yikes, a heart rate of 181 bpm, and an elevated blood pressure to boot)

The cocktail of pain meds that we are giving her appears to be helping.  Pain team is so familiar with our girl, dare I say it was easy coming up with a multi-phase plan for pain management should Lucy's needs escalate over night.  There was even a time this afternoon while infusing her plethora of her pain that we all were able to enjoy a silly, very chatty Lucy.  Hey, we'll take the good times whenever we can get them.    

We are so grateful for the amazing team of doctors and nurses who know and love our girl! They help to make our life livable, and that's saying a lot!

I had all of twenty minutes of sleep last night…at least it was something, right!?!

Wrong!

Lucy's meds are all ordered and timed correctly and we have a fabulous nurse working with us tonight.

Translation, I am planning on sleeping ALL night.

Thanks for your thoughts and prayers, love and support.

ED...

Lucy woke in the middle of the night with increased abdominal pain that was way above and beyond her normal belly pain.  She's shaking, retching, vomiting…and just plain miserable.

Not sure what's going on but everyone is working hard at trying to figure things out.

Packing Lucy up quickly…it should be an Olympic event.  I think I have what we need to keep her on med schedule until orders can be entered into the system and pharmacy can begin compounding everything.

This life, our life, it's not for the weary or faint of heart.  If you could please say a prayer for comfort and clarity for our little one we would very much appreciate it.

Secured...

We are home, safe and sound.  By the time we left the hospital this evening the snow had stopped and the roads were better.  The big kids are nestled all snug in their beds, while Lucy and I are snuggled together in my bed - infusing meds, what else is new.

Today's procedure was not quite as simple as we were hoping it would be, but then again is it ever really simple!?!

Our surgeon and IR doc came out to tell me the good, the bad, and the ugly.  Basically, the stoma tract has stretched out considerably, and as such it's becoming increasingly difficult place and keep a tube in it.  Our goal is to keep the tract open, but not necessarily draining because as long as Luc has a stent in her bile duct there is an outlet for bile to drain.  The benefit to keeping this tract is so that we have a back up for if and when there is ever a problem with her stent.  This tube serves as a window or a porthole into the area of her body that is a huge cause of concern.  It's very simple for us to inject a little contrast through her tube and see just how things are flowing without having to subject Lucy to repeated MRIs.  

While  attempting to suture the tube securely to Lucy the tip of the suture needle broke off causing our surgeon to have to make a small incision in our girl's abdomen to retrieve the broken piece of the needle…seriously.  To add insult to injury our surgeon accidentally dislodged the tube while all of this was happening and another tube had to be placed.  In his defense the tube does not stay in place without it being sutured.  Does anyone else see the irony in this?  As unbelievable as all of this sounds, it was humorous to hear them both tell me what had happened.

Unfortunately, Miss Lucy has had to deal with the brunt of all of this.  She was experiencing quite a bit more pain tonight as a result of all that she had to endure today.  Pain meds are a good thing.

When all was said and done another Malecot tube was finally sutured securely in place.  Here's hoping that it stays in place well into the new year!

I am declaring tomorrow a snow day for Lucy and I!   We are going to cozy up together and maybe make some gingerbread men... her favorite kind of men.

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

Rinse, Lather, Repeat…Ugh!

It's snowing, and as such our kids have their first official snow day of the school year.  They had a two hour delay yesterday, but that doesn't count according to Jack.

Snow is not wheelchair accessible…just saying.

When I heard the weather report last night I didn't want to believe it.  They predicted Sunday's storm incorrectly…less than an inch turned out to be almost a foot of the white stuff.

This morning I had a bit of a panic attack when I looked out the window after receiving a call from the school district at 5:30am alerting us that school was canceled.   You see, Lucy is scheduled today to have surgery to replace her cholecystostomy tube…again.  Yes, you read that correctly!  Rinse, lather, repeat…ugh!  Less than twenty-four hours from the placement of her tube on Friday night this tube came out because it was not sutured in place.

Not only did I have to pack and prep Lucy to get to the hospital by 11am, I had to find a place for the kids to hang for the day.  Never-a-dull-moment in our life e-v-e-r!

So very very thankful for amazing friends.  The kids packed up all of their snow clothes, sleds, and a few snacks and were on their way to frolic and play, while I prepped and and primed IV bags and meds  to take our girl to the hospital for the day.

After discussing the ins and outs (pun totally intended) of how we are going to keep this tube inside of Lucy, we kissed our girl good night at 12:45pm and left her in the the very capable hands of our IR team and surgeon.  The plan for Lucy is to suture the heck out of this tube…really!

Your thoughts and prayers, love and support are greatly appreciated.  

Update...

Thank you for your prayers, they were able to get a tube back in…whew!!!  Our urologist was also able to take advantage of Lucy being under general anesthesia and did some work on her bladder, Luc has been having some issues with sediment and blood clots clogging her catheter.  We also took the opportunity to change her GJ tube while she was under, we considered it an early Christmas present.

Say a little pray please...

This time last week we were here…

Today we are sitting in the waiting room, waiting for our little one to come out of surgery…again.  Lucy's gallbladder tube came out sometime during the course of last night, not sure exactly when.  By the time I realized this her stoma, or the hole that the tube comes out of, was closed shut.  I could not insert anything into the hole to try and open it up.  This discovery set several balls in motion today which ultimately ended with a team of doctors and nurses working together to try and reinsert a new tube into Lucy's gallbladder site. There is a very real fear that we may not be able to get a tube back in…if this is the case we will need to weigh the risks vs the benefits of putting Lucy through another gallbladder tube surgery.  

If you could say a little prayer please that our wonderful team of docs will be able to reinsert a wire and dilate Lucy's stoma enough to get a tube back in, we would be ever so grateful.

So very thankful for another year….

Last year at this time…

our girl was in the fight of her life.

She was so very very sick!

Our life has never been the same since she was born, even more since this time last year. 

Despite it ALL, we are trying our best to live life.

This time this year…

we are in Disney World, celebrating life...

and making memories!!!

 Hola Handy Manny, meet Lucy.  Bet you didn't know this, but you just so happen to be the LOVE OF HER LIFE (at the moment).  We thought it might be nice for her to meet you in person :).

We are all about seizing the moment, and boy have we had some moments this week.  I will write later about the story behind this story, how we decided to forgo any sleep and stress over how on earth we were going to do ALL of this in "the happiest place on earth".  But the ending goes something like this… life, it's all about the memories.

(To all of those who know and love us and had no clue that we were planning this, we didn't really know either until last week :).