Saturday, May 18, 2013

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!".



2 comments:

Helen A said...

It's breaking my heart that she is in so much pain. Sorry to hear she needed to have the incision. Because " it is Lucy" she is going to fight. Praying she gets relief and that she will get the needed relief and rest.

Susan said...

Wow! Just checked in, and realized all that's happened in the last few days. I'll be praying for relief from pain, and as much healing as possible. God bless little Lucy, and her Momma and Daddy! Hugs.