Still inpatient...

Elizabeth is still inpatient, and will probably stay until around Wednesday of next week. She is doing well, but there have been a couple of issues come up that will keep her in the hospital for longer than originally anticipated.

First, when Elizabeth's drains were placed, it was originally thought that there was something putting pressure on Elizabeth's bile ducts (tumor or scar tissue). Once the fluid was drained, it became clear that it was infected from being unable to drain properly through the ducts. This particular situation (infected, blocked bile ducts) is called cholangitis. Her biliary drainage samples have grown bacteria, confirming the infection. She is currently on IV antibiotics, and will be for at least 2-3 weeks.

What I am most worried about, however, is Elizabeth had blood cultures come positive last night. The cultures taken before her procedure were negative, but the cultures after her procedure were positive. Positive cultures means that there is bacteria in her blood, which is really not good. If it is real, then it suggests that there was bacteria introduced into Elizabeth's bloodstream during the drain placement. It is Gram positive (which is supposedly more susceptible to antibiotic treatment than Gram negative) and will be treated with vancomycin. I am rather unhappy that Elizabeth now has this complication to deal with. I'm trying not to jump to conclusions, but unless someone can explain to me why all of a sudden AFTER the procedure her blood is infected, while BEFORE the procedure it wasn't, we're going to need to speak with administration as to how Elizabeth's bloodstream could have been infected (with different bacteria than her liver infection, mind you--those were Gram negative) during a supposedly sterile procedure. I am praying that this bacteria in her bloodstream is NOT vancomycin resistant, and that it responds well to the vanco.

These things are serious things. People die from cholangitis. People die from blood infections. Yes, we see things with a different frame of reference than most, simply because pancreatic cancer is the most fatal thing we face every day. But that doesn't take away the severity of everything else Elizabeth faces. She is doing well, everything considered, but she is not home free yet from either the cholangitis or the new blood infection. Generally, I try to keep these updates very positive, but I need to be honest, and I am worried.

As far as discharge, Elizabeth won't be able to go home until her cultures are cleared. Samples are taken daily (sometimes more often), both biliary fluid and blood, and sent for cultures. We are waiting for her biliary fluid cultures to show no more infection to go home. Also, now we need her blood cultures to be negative THREE times in a row for her blood infection to be considered treated. So these are the things keeping her inpatient. Every second she spends in the hospital, she is being exposed to all the bacteria and viruses that are there. I used to want her kept inpatient as long as possible because I thought it was better to have the docs right there just in case. Over time, though, I've learned that the longer we're there, the sicker we get. I can't tell you how many times I've caught stomach bugs while staying with her because parents have to use the public restroom facilities. No amount of handwashing can keep me well if there is another parent or visitor on the floor sick. I always seem to get it, and I'm careful about the handwashing and the santizing. It just doesn't matter--hospitals practically breed germs. I want Elizabeth well enough to come home so I can control her environment without a million people coming in and out of her room all day (and night) long.

The good news is that Elizabeth is off the strong pain killers (dilautid and vicodin) and has only had 3 doses of tylenol #3 in the last 24 hours. She is uncomfortable and not quite up to her usual drawing or crafting in her bed, but she is markedly improved from before the procedure. We will be visiting her later today so I can bring her full supply of supplements, extra clothes for Dad, and all of her goodies from school. Yesterday was the last day of school for the kids before holiday break. Elizabeth had to miss her class party, but there were a lot of people who sent special goodies and presents for her, so I'll be bringing them to her in the hospital.

Last night I took the boys out to Santa Clarita for a holiday light tour, sponsored by the Michael Hoefflin Foundation. We were invited to join Sue and Chris Hoefflin and two other families on a vintage firetruck to look at the spectacular lights in the area. Elizabeth and Dad would have so enjoyed it! I'm sad that she didn't get to go, but I also didn't want the boys to not go because they were already excited for it. The night started with dinner and then we all got to climb on the truck with Santa! I'm telling you, this Santa is the REAL Santa Claus--we've met him before at MHF events and there is no better Santa anywhere! Two Christmases ago, he visited the kids at a MHF support group meeting, and Elizabeth kissed him on the cheek without hesitation. He is just so amazing with the kids and so jolly and so happy--he isn't possibly acting. Danny and I sat next to him on the truck, and Danny must have bapped him a dozen times, and Santa was just so funny about it. I guess Danny will get that tricycle afterall... It really was nice to see Tyler (a leukemia patient who is on maintenance) and his family along with meeting another leukemia patient, Brian, who is recovering from BMT. We missed Mackenzie who was out with strep throat (please say a prayer for her), but we hope she is feeling better soon. Thank you to the Hoefflins for inviting us.

Please pray that Elizabeth's two infections respond well to the antibiotics. If everything goes well, she should be able to be home in time for Christmas. Thank you Angels for your continued messages and cards and presents. I will be bringing them all to the hospital as they come for Elizabeth (with the exception of the Christmas presents--those go under the tree). It always makes Elizabeth smile to get Angel Mail!

Merry Christmas and Happy Hanukkah!