A really long Day +132

We left the apartment today at 8:45 am to head into clinic and we didn't get home until 3:45 pm. After our long day in clinic we got a few answers and we have a few more questions. Today seemed like a very surreal day. There were several moments today when I looked around the cramped 6 x 6 exam room and thought "how did this become my life." The kids were both so well behaved today. I'm sure that Olivia is beyond tired of going to the clinic and Peter is the most well behaved one year old in the world. As we were reaching the 6 hour mark of being in our small exam room there were several nurses in the room and we were discussing one of Olivia's medications. Peter was crawling all over me, literally he was crawling all over me. He was so desperate to be able to crawl around but there's no way I'm going to let him crawl on the dirty hospital floor. I finally just pulled a chair over to the sink and rolled up his sleeves and let him play in the water so that I could concentrate on what we were talking about. Everyone at the clinic today was so fantastic. The nurses helped entertain the kids and even offered to watch them when I ran to the restroom by myself (such a treat)!

So now for the medical stuff.

Olivia's poop, snot, and blood have all been tested so many times for so many different things! Out of all the tests we FINALLY have a positive result, Olivia has norovirus. It's a stomach virus that causes nausea and vomiting, loss of appetite, and dihereah. Norovirus may sound familiar, it's been in the news a bit, in March 2009 there was a norovirus outbreak on a Holland America cruise ship. Typically it lasts between 12 and 24 hours but it can last for several weeks in someone with a compromised immune system. They think that Olivia may have had norovirus a couple of weeks ago when she stopped eating and it's great that at this point Olivia is starting to feel better. There was some debate over wheather or not to treat it because she's obviously feeling good. Typical treatment is oral immune globulin for several weeks. Olivia already gets IV immune globulin (IVIG) once a month so we're familiar with immune globulin. They did decide to give Olivia one week's worth of oral immune globulin. Olivia seems to like the way it tastes but unfortunately we cannot get the immune globulin from the pharmacy, we will have to go pick it up every day from the hospital.

While it is nice to know about the norovirus it is not the source of Olivia's high white blood count. Today Olivia's white blood count was up again, it was 31. Post-transplant a high white blood count is indicitive of a bacterial infection but again all of the cutures are coming back negative. We had a short but intense discussion today with Dr. Paul (Olivia's primary physician here at Duke). It is his theory that Olivia has some sort of bacterial infection in her intestines or her sinuses but that the antibiotics are keeping it under control but it is still irritating enough to her system that her immune system is doing it's job and fighting the infection. We have a CT scan scheduled for Friday morning so hopefully that will provide some more information. In the mean time they changed Olivia's antibiotics again to make sure that she is continuing to receive a broad spectrum of antibiotic coverage.

As a side note I finally remembered to ask about the results of the chimerism test to determine the percentage of donor cells. I'm happy to report that Olivia is now 100% donor cells and her body is producing the enzyme that she was previously unable to produce. We're still waiting to see how much of the enzyme her body is producing and there are more tests to determine this at the 6 month and 9 month marks.

Part of the reason we had an extended visit at the clinic today is because we were unable to get blood return from Olivia's port. They administered a dose of TPA but were still unable to get any blood so they sent us to radiology for a "dye study". I know there's a long medical name for this test, something to do with fluoroscopy but basically they put some contrast dye into Olivia's port and then used x-rays to look at how the dye was entering Olivia's bloodstream. They wanted to make sure that there is not a clot forming or scar tissue. Fortunately we were told that it's just a fibrus sheath so we'll just have to wait for it to disolve and continue to adminster TPA and heparin to help break down the sheath. They did administer another dose of TPA and decided to leave it in for 4 hours to help break down the sheath. We were able to leave the clinic around 3:30pm but had to come back at 7pm so that they could check to see if the port was working again yet. It was poring rain and our nurse practicioner was nice enough to meet me at the car and help me get both the kids up to the day hospital so that he could check for the blood and then helped me get the kids back into the car. Unfortunately Olivia's port still didn't want to give us any blood.

The really unfortunate news is that Olivia will have to be stable for at least 2 weeks before we're able to leave Durham so that means that we're not going to be going "home" to Fayettville for at least another couple of weeks. I'm trying to be positive and think of things that we can do in the Durham area. I think that I might buy some Christmas decorations for the apartment, I'm hoping that will help cheer us up a bit.

Oh and on top of all of the fun we had at the clinic all day once we got home Olivia managed to find my phone in our enormous diaper bag and she forwarded a text message that I had sent to my mom to EVERYONE in my phone. So if you got some cryptic text message saying something about how I called you but you didn't answer and we were home from the clinic please disreguard it. Whoops! It was really nice to hear from so many friends and family members though! Sorry everyone!