1/25 Going Home? Maybe Not

We spoke with the GI team today and they’re pretty concerned with that liver of hers. They’ve decided the best course is to take a liver biopsy and that should happen either tomorrow or Monday. They’d like to know more about what’s happening in there and the gold-standard test is a biopsy. From that they can tell lots of good information, like the level of scarring, or the level of fatty infiltration, or if there’s a smoldering infection in there…lots of good stuff. They’ll take a big ol’ needle and stick it right into the liver and bore out a core of tissue. Upon removal they’ll plug the hole with a foamy cork to prevent bleeding from the big hole punched in her liver.

We talked about the upcoming surgery and the importance of keeping her spleen. Josie’s spleen is acting as a pressure valve for the liver which is partly causing the spleen’s large size. If the spleen is taken out then the liver will have only itself to deal with the pressures and that will likely cause dilation in its vessels and that’s not what a stressed liver needs. Also, the spleen plays a pretty big role preventing infection and if it’s removed that’ll make Josie more susceptible to infection. This is not a very nice thing considering her autoimmune disease. They really need to do whatever they can to keep that bugger in there.

We had our big Go-Home planning meeting today. We talked about Josie’s needs, all the drugs she’s on and how best to manage it all if we end up going home. Looks like the earliest we could go would be next Wednesday the 31st. Coincidentally this is the last day of Josie’s confinement in that fine spa-like sardine can we’ve been enjoying these last two weeks. When home there will be lots of mixing of drugs and lots of administering of drugs, weighing and measuring fluid inputs and outputs, vital sign monitoring, strict time sensitive drug administration, suction of her various tubes, on and on and on. Daunting for sure but we can hack it (I think). Then we went over Josie’s chemo drug, the IV Cellcept. Turns out this is a big problem. Being that Cellcept is chemotherapy and that Josie needs the IV version we need a safety device called a 'chemo hood' in order to mix it properly (or within safely guidelines at least). A chemo hood isn’t something they readily hand out to people, and you can't find one at Target either. It’s kind of like a salad-bar shield with a vacuum cleaner hose sucking the air out. Cellcept has a shelf life of about four hours so it needs to be mixed at the time of administration. This may very well be a going-home show stopper. We’ll see what we can figure out.

Dr. Vehe (pronounced Vay and not Vay He) was in and Josie was all full of it, pulling his tie and pushing him around. She was really full of energy when he was there. It’s so nice to see her enjoying herself some of the time again. This was the call of the day…until later when she spiked a 102.4° fever. Nice! Back on antibiotics and more blood cultures.

Never a dull moment with this girl.