I want Elizabeth's drains out NOW!

Elizabeth is still having a lot of pain. She has moved up again from the tylenol#3 to vicodin, and even that isn't taking care of all the pain. Sometimes we get lucky and her vicodin dosing will coincide with the benedryl she gets (for her vancomycin--she is one of the kids who has a minor allergic reaction to vanco so she gets pre-medicated with benedryl to avoid the reaction) and so she will really get knocked out and be able to sleep for a few hours. The biliary drains have been acting up, leaking from the placement site and draining blood (and blood clots at times) still. We have been to CHLA every other day it seems... Christmas Eve in emergency, then the day after Christmas for blood draw. When we were there yesterday we saw Dr. Marcio who took a look at Elizabeth's drainage site. He conferred with Dr. Stein who agreed that most likely the bloody leakage at the drain site is from movement irritating the site and drain (which is NOT sutured in place...grr) and that the blood and clots draining through the catheter are most likely because the rigid catheter is irritating the bile ducts internally and causing some non-emergent bleeding. Really, I just want the darn drains out ASAP and the stents put in so we can be done with this whole mess. Her gas pains are back, and she is even more uncomfortable because of the drains. Once the stents are in, and the drains removed, hopefully then (and even the docs agree that it is most likely) she will have less pain.

We had a quiet Christmas at home. The boys had a blast, but Elizabeth was definitely not able to fully enjoy it. She didn't have the strength to open her presents herself and wanted me to open them for her while she watched. It broke my heart. It takes a lot to suck the enjoyment and excitement out of Christmas for kids, and Elizabeth is definitely dealing with a lot head on. Thank you to everyone who sent her special presents. It was really nice to see her smile when she saw what they were after I opened them, and that made my Christmas. I can't wait until she feels well enough to be tearing open packages and notes that are sent to her and ripping off wrapping paper on birthday presents in May. It was such a bittersweet mix of being grateful to have her home for Christmas, to even have her here with us for another Christmas, and being so sad that she couldn't enjoy it like the other kids. Every day it seems lately that we mourn the loss of normalcy, especially lately, while still being grateful for what we do have. It is such a difficult and emotional place to be. Tears of joy one second, tears of deep sadness the next... doesn't seem to matter which, I'm crying constantly lately!

Please keep praying for Elizabeth to stay strong and determined. Please pray that she can feel some pain relief soon, and that the drains stay uninfected and do their job until the stents can be put in. Thanks for checking in.