Thursday, October 31, 2013

Ever feel like this...



Happy Halloween from a yo-yo, an angel, Little Red Riding Hood, and a little mermaid not to be confused with The Little Mermaid (pictures soon to follow, just as soon as I actually take some :)

Pumpkin courtesy of Drew, the master carver and creator of all things jack-o-lantern in our house.

Tuesday, October 22, 2013

Still here...


The past few weeks have been a blur...



Today we're spending the day at the hospital filling Lucy's tank with some blood product.  Blood transfusions take a l-o-n-g time! Once the blood actually hangs I know we have about four hours to go.  Before that it can take hours to get her type and screen back and have the blood bank process the blood.  I'm not complaining, just sharing a bit about the process.  I'll gladly sit through hours and hours of transfusions if that's what it takes to keep our girl going.  Thank you to all who donate blood, we appreciate you!

I have so many things I want to document here.  I am just going to have to sit down sometime in the very near future and write a random "here's where we are in our life at the current time post",  but today while I watch blood drip every so slowly into my little one's body I am working on a post because I want to share something with you about something special coming up in our life.

Stay tuned...

In the mean time thanks for checking in on us and for your thoughts, prayers, love and support!

Friday, October 11, 2013

It's In...


Our surgeon was running behind today, 


Lucy waited patiently for him,


and then fell asleep.

Lucy is the proud owner (whether she likes it our not) of a brand spanking new 7fr double lumen central venous catheter placed in her left subclavain vein.  In other words, she has a brand new line coming out of the left upper quadrant of her chest with two points of access.  Our surgeon, whom by the way we love, love, love, reluctantly took out, in his opinion, the perfectly placed PICC line.  Perfectly placed if you don't ever want to wear pants, that's what I told him.  He was a good sport about the whole thing.  He can be so stubborn, but then again so can I.   Seriously, the jokes and sarcasm have been flying around here all day, it definitely helped to lighten the mood which is always welcome when your child is in the operating room.

Luc is a bit cranky and tired, she tends to wake up from anesthesia on the wrong side of the bed, and she did just that.  We are going to let her sleep it off for a while.   I am however packing us up, we are going home tonight!  The doc at Hopkins who placed Lucy's stent is out of the office for the next few weeks. When he returns we will have to make arrangements to go back down to Hopkins for another ERCP to clean out the debris in her biliary stent.   As for now we are going to go home and resume living life. 

Thanks for your thoughts and prayers, love and support!

Thursday, October 10, 2013

Location, Location, Location...

Everyone knows the most important rule in real estate....


location, 


location,


location! 

Our main doc and I agree, we don't like the current location of Lucy's temporary line.  Our surgeon is not necessarily in agreement but is going to move the line back to her chest, aka prime real estate.  Cultures have remained negative in both her blood and her urine which means we can head to the OR. 


Lucy has an OR time slot for 11:30 tomorrow morning.

Wednesday, October 9, 2013

A pretty boring day..

When I woke this morning I saw an email from the good doc that read "Stopped by early everyone asleep.  Will touch base later today.  Otherwise pretty boring day."  I thanked him for letting us sleep in (sad but true, I get more sleep in the hospital than at home) and told him that we were looking forward to a pretty boring day.

Our room was dark, quiet, and dare I say peaceful despite being the loudest room on the unit.  Lucy slept pretty much all day, she has that look about her that says I'm not really here even though I'm here.  Yesterday's procedures took a lot out of her.  I was sad to see her like this today because, like I mentioned, we have had some pretty amazing days with her recently.  We savor the good days when they come and look forward to them returning when they are gone.

Blood cultures are still negative for growth as of 24 hours, which is a good thing.  Urine analysis looked pristine, also a good thing.  Lucy's labs are indicating that she is trying to fight off something, her white blood cells are elevated for her.  If I had to guess where the possible source of infection is it would be her bile duct.  Her liver function labs are not great, but that's nothing new.  We are waiting to hear back from Dr. O at Hopkins as to what he wants to do about the occlusion in Lucy's biliary stent.

Drew and the kids came for dinner tonight, it was good to see them.  Lucy woke for a little bit while they were here but then went back to sleep.  The kids showered and put on their pajamas and then went home to go to bed.   Tomorrow's another day, kind of glad I'm not the one who is going to have to wake the kids in the morning.  They are going to be tired cause they left here kind of late.  Good luck with that honey:).

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

Tuesday, October 8, 2013

Settling in...

Seconds feel like minutes, and minutes feel like hours just ask any parent who is waiting for their child to come out of surgery.  Whenever Lucy is under anaesthesia for any procedure I look at my watch at least a million times.   When all was said and done two hours had gone by and lots of new tubes had been placed inside our little one's body.  Her chest is line free at the moment and I couldn't resist rubbing her bare chest when I saw it.  They placed her new temporary PICC line in her right femoral artery, aka her groin area.  Not the best location when you wear a diaper or if you want to wear pants.

We had the dreaded conversation about line access with our surgeon today.  There are only so many places in the body that you can place a central line, preserving vein access is huge in our world.  Lucy will have a scan of her upper extremities sometime tomorrow or the next day to look at all of her veins so that we can strategically locate a new spot for her new central line that we are hoping to have placed on Friday.  Our surgeon was urging us, however, to consider keeping the PICC for as long as possible, but in the same sentence did say that he would keep our OR time slot on Friday.  We understand the need to preserve line access, but we also need to consider Lucy's quality of life when it comes to having to live with all of these lines and tubes in her body.  Where the PICC is placed is a terrible location to have a bunch of tubes coming out of your body.  Lucy woke briefly tonight and started pulling at her new line.  She's not happy with where it is and wanted it out.  She's still pretty out of it tonight, hopefully when she is a little more alert in the morning we can talk her into not pulling at it.  

As for her gallbladder tube, after cauterizing the granulation tissue that was growing around the stoma they were able to successfully place a new tube with relative ease.  One of the reasons we choose to keep Lucy's gallbladder tube is so that we can use it as a potential pop off drain if the stent were to become occluded.  Last week Lucy put out more drainage from that tube than ever.  When I told our surgeon this it prompted him to look further.  When injecting dye into her stoma site they discovered that her stent is partially occluded with sludge and debris.  The stent is draining, albeit not as well as it could.  Our surgeon is going to call Dr. O at Hopkins and find out if he can clear the occlusion via ERCP.  Our IR doc said that she could go in and try and clear the occlusion, but that would require having to make an incision in Lucy's liver.  We all agreed that undergoing another ERCP, as big of a hassle that it is, is the better way to go about clearing the occlusion.  Seriously, if it's not one thing it's her bile duct!

We are settling into our home away from home.  Labs and cultures were done when we arrived on the floor tonight, please pray for negative cultures.  I am choosing to look on the bright side of things, at least I will be able to get a full nights sleep for the next few nights.   

We just can't seem to stay away...

We are packing up and heading to DuPont today.  On Sunday just as we were getting ready to leave for an event at our favorite place, Longwood Gardens, we discovered that Lucy's gallbladder tube had come out and was literally hanging on by a thread.  This prompted a quick email to the good doc in which I simply said, "Now what?".  There has been some debate as to whether or not we should keep this tube for Lucy now that she has a permanent stent in her bile duct.  However everyone agrees, including us, that there is merit to this tube and as such we are going to try and keep it.

Last week when drawing labs from Lucy's blue lumen on her central line, aka her life line, we discovered that the line was ballooning whenever we flushed it.  This is no good, it is on the verge of breaking, and as you can imagine a broken line would be a disaster of epic proportions in our life.  This particular central line has been in Lucy for 14 months, that's one year and two months people!  That's a record for us! This line has also had the heck TPA'd (yes, that's a verb in our world) out of it too.  Due to the duration and wear and tear on this line Lucy's going to have this line pulled and a brand spanking new line placed, but not all at once.  Nope, that would be way too convenient.

To complicate matters, Little Miss has been dealing with intermittent fevers for the past week or so which has us all wondering if the almost broken line is harboring bacteria.  Our surgeon believes because the line has been in her for so long that it likely has bacteria on the outside of it that has colonized and taken up residence there.  When we go to pull it there is a fear that Lucy will be showered with bacteria.  Not good, so we are taking measures to ensure that Lucy stays infection free.  Her old line will be pulled today and a temporary PICC line will be placed.  On Friday we are planning on heading to the OR, if blood cultures are and stay negative, to have a new double lumen Broviac placed in Lucy's chest.

Since the placement of her biliary stent, Lucy has been feeling better, praise God!  She has her ups and downs all-of-the-time, but the past few days have been pretty great days for our girl.  Here's hoping that we keep her well and that things go according to plan this week.

Lucy is currently under anaesthesia having ALL of her plumbing replaced: central line, gallbladder tube, gj-tube, and suprapubic catheter - that is if our urologist has time, if not that will be replace on Friday.

As always, thanks for your thoughts and prayers, love and support.