Today...

After a rough night, I'm happy to report that our day was much better.  Lucy is comfortable, which is amazing, considering the amount of holes in her belly.  She slept a lot today, but when she was awake she was pleasant.  Lucy has an On-Q Post-Op Pain Relief System strategically located near her largest incision site which is delivering a local anesthetic, I love that they did this for her.  She also has a PCA of dilaudid running which is helping to keep her comfortable as well.  Once we got on top of her pain last night, it has been much easier to stay on top of it.

Lucy woke this morning with no fever.  She had two spikes in temp last night that we believe was as a result of a shower of bacteria that spread throughout her body.  There was some fear of what antibiotic we would put her on if her temps did not come down, ugh I hate that this is our reality.  Thankfully after two doses of Zosyn,  no more fevers.

Although the procedure did not go as we had hoped, her post-op course is going better than we expected.  We moved out of the PICU and back up to "our unit" late this afternoon.  Once we arrived back to familiar territory an albumin infusion was ordered followed by a whopping big dose of lasix to begin the process of deflating Lucy.  She came out of the OR looking like a balloon.  I'm always amazed at how quickly the albumin-lasix combo works, Lucy looks more like Lucy again tonight.

The FFP infusion worked as well,  Lucy's clotting studies looked better this morning, her lactate was also much lower.  Lucy is in need of a blood transfusion, but we held off on doing that today for fear of fluid overloading her, we'll do it tomorrow.

Dr. R came in to see us early this morning even though he was not the one on call this weekend.  Dr. K called him last night to give him all of the gorey details.  After a discussion about how things went we all agreed to just take things one day at a time for the moment.  After agreeing on this he told us that we have a tentative date for stent removal on May 31st.  One day at a time... right!

Sleeping Soundly...

Some details about today...

Lucy is doing what Lucy does best, she is keeping everyone on their toes.  She is in pain, has a fever, and is down right irritable!  She is where she needs to be at the moment, her care is being managed by the PICU nurses and docs. For me to say this is means that we really DO need to be here, we try and avoid the PICU at all costs.  It's nothing personal with the unit, it's just that we have a place in this hospital where we call home and the people there take wonderful care of our girl. We are monitoring Lucy very closely for any signs of infection, blood and urine cultures were done the moment she arrived to the PICU.   It has been a non-stop med marathon in here since leaving the OR and arriving to the unit a little before 7 pm.  Lucy's body is stressed, she is telling us so, as is her lab work.  She had quite the elevated lactate level when she arrived in the PICU so extra fluids and bi-carb were ordered to see if we could neutralize her levels.  Lucy's blood clotting labs were off  putting her at risk of bleeding,  we are going to run an infusion of FFP (fresh frozen platelets) to help minimize this risk.  Thanks to those of you who donate blood, it truly saves lives.

Dr. K was able to access the gallbladder laparascopiclly, but then had to switch to an open procedure to finish.  Lucy's gallbladder is very diseased, it is small and necrotized we suspect from lack of use, especially since placing her stent.  You know the old adage, if you don't use it you'll loose it.   Lucy has about a 2 inch incision where her new tube is stitched in place.  Dr K gave her a local pain medication that is being administered directly to her incision site, we are being told that this will help her a lot.  I'm hopeful that it is helping, but her breakthrough pain has been tough.  In addition to the local anaesthetic she has a PCA pump of dilaudid running continuously as well as PRN doses every two hours as needed, and she has needed them.   At one point tonight as she was crying she told us that it hurts to cry and even breath...talk about breaking a mama's heart.  On the other hand I was so proud of her for telling us this because more often than not Lucy will just withdraw from you when she is in pain.

One of our fears in doing this surgery was the fear of the gallbladder tearing or shredding and having bile leak into her interstitial tissue.  This happened, her gallbladder tore and shredded as Dr. K was suturing it in and as such we are fearful to allow anything to drain through her gallbladder at the moment.  Dr. K caped off the drain and wants to wait a week to let things heal, repeat a cholangiogram, and then make a decision as to whether or not he wants to open up the drain to allow bile to flow through it. As long as the stent is in place, bile is flowing down and out, when we remove the stent that is truly when the drain will be put to the test.

As for her bladder, things went smoothly in that area.  An 18fr catheter was placed so that we can allow for better drainage.  So far so good.

When discussing the procedure after the fact with Dr. K we all agreed that we need to wait and see how things go before making any hasty decisions.  Although we planned on complications, it doesn't make them any easier to experience.  The phrase, "it's Lucy" was uttered more today than usual.

Drew and I are standing vigil tonight at Lucy's bedside while our other three kiddos are sleeping at our friends house.  The attending who is on in the PICU just so happens to be one of our palliative care docs who knows Lucy and understands the phrase "it's Lucy!".

Quickly...

I want to quickly update all of you.   They are just wrapping up at 6:00 pm.  Things did not go as smoothly as we would have liked, but a drain tube was placed in her gallbladder.  We are not sure if this is going to work, but for now the stent is still in place so things will continue to drain as long as it's there.  Things were more difficult than expected and as such we are heading to the PICU, they will be better able to manage her pain tonight.

For now, I need to keep reminding myself to breath.

Thanks as always for your thoughts and prayers, love and support, we appreciate it very much.

A few things...

Lucy's gallbladder is shredding as they are trying to suture it to the skins surface, this was something that we were afraid of.  They are going to do a dye study to see where things are flowing. If they can't get it to adhere to the skin's surface then we may have to close her up and reassess.  Drew and I are sitting in the shade outside the PACU by the fountain, praying, worrying, reminding each other to breath.  

4:17 PM

Dr. K was successful in laparoscopically locating the gallbladder and is in the process of placing a 28fr Malecot catheter in her gallbladder.   We were told that Lucy is behaving, Dr. R will be so proud of her, she is actually following his orders :).

Here we go...

At 2:46 pm we kissed Lucy good night and said we would meet her at the ice cream truck in her dreams, she has dreams of eating 100 scoops of " only anila"(only vanilla!) ice cream.

I will update when we know more...