Your White Blood Count is WHAT!!! Day +130

We didn't have a scheduled appointment time in clinic today, they told us to just come in when it was convenient. We had to wait in the isolated waiting room for over 2 hours before we were able to get into an exam room and continue to wait to see someone for another hour. That will not happen again, only scheduled appointments from now on please!

The nurse practicioner came in and told me Olivia's white blood count (WBC) was 40. Normal range is between 3.8 and 14 so Olivia's WBC is obviously elevated. Typically when someone has a high WBC it indicates a bacterial infection but that isn't always the case with transplant patients. Basically everyone is confused. Olivia looks good, she's feeling good, she's eating and drinking. She looks and seems pretty healthy with the exception of her crazy high WBC. She is on an antiviral and an antifungal that she's been on since her transplant. She started a 7 day course of an oral antibiotic this past Wednesday and just finished up a 3 day course of IV antibiotics. But her WBC is continuing to rise. They switched her oral antibiotic today and they ordered a CT scan for tomorrow in hopes that they can gather some more information to figure out what's going on. They did 2 sets of blood cultures last week and they are all negative thus far. They did another series today, testing for things like adenovirus and Epstein-Barr Virus. We'll just have to wait and see what happens.

I'm scared, we were expecting to be given the okay to go to Fayettville and now her WBC is high and no one seems to know why. I hope we'll

Chrismas Picture Outtakes

Here are a few of my favorite outtakes from our Christmas photo shoot over the weekend. I don't want to ruin the surprise so you'll have to wait until you get your Christmas card in the mail to see the official Christmas photo. Photography is not one of my talents but I think we got a few cute shots. I love the photo of Mike and Olivia and Peter! We went to Duke Gardens and the weather today was beautiful! Enjoy! If you know that I don't have your address please email me so that I can be sure to send you a card (laurieleiva@msn.com).

Gobble Gobble

I wanted to post some pictures from our Thanksgiving feast but I didn't get a chance over the weekend so here they are. We had a good Thanksgiving but the best part was being to spend 4 whole days together as a family of 4. I hope that we will get to move to Ft. Bragg soon so that we can live together as a family soon!

Oh Olivia! Day +129

We have no idea what is going on with Olivia. She's continuing to eat and drink and her weight is steady. Her poop is normal (back to the way it was pre-transplant). She is whining a lot and the steroid increase over the last week and a half has left her grumpy and full of mood swings. She's not talking very much, she's just grunting and moaning a lot. I know that we're babying her, we're not making her use her words, but it's so hard to know when to push her to do more and when to just cuddle and support her. We went into clinic for a quick appointment on Friday. They were going to check Olivia's white blood count because it was a little high on Wednesday. They started her on a new antibiotic on Wednesday and wanted to make sure her white blood count was trending down. We all went into the clinic for our quick appointment on Friday. We got home and ate lunch and put everybody down for their naps and then the phone rang. Olivia's white blood count was even higher so they wanted her to come back in to clinic so that they could give her a dose of IV antibiotics. Mike took Olivia in for her IV antibiotics and I hung out with Peter at the apartment. They wanted to give Olivia a three day course of IV antibiotics to help bring her white blood count down. They ran another series of blood cultures to check for infection but they have all come back negative. Another stool sample was obtained and tested, so far all tests are negative. Her white blood count was down on Saturday but today it was up again. At this point we're confused. Olivia isn't acting 100% like her self but she's also not acting like she's not feeling well. She's acting grumpy which we expected because of the steroids. Over the weekend they did leave Olivia's port accessed since we knew that she would be getting IV antibiotics each day. Her port is completely under the skin so when it's accessed they insert a needle that is attached to a "tubbie" that looks just like the "tubbie" from her central line. They put a bandage over the entire thing and then tape up the "tubbie" so that Peter doesn't see it want to grab it. To "de-access" the port you just pull out the needle and throw the whole thing away. Only professionals access or de-access Olivia's port. Mike and I were worried about Olivia sleeping alone with her port accessed so we took turns sleeping with her. Sometime between midnight and 2 am on Friday night Olivia decided to de-access herself. I freaked out, called the PMBT fellow on call and they talked me through how to see if the needle was still intact. The needle was fine, it came out cleanly so I put it in a ziploc bag to bring to clinic and checked to make sure Olivia wasn't bleeding anywhere. On Saturday and Sunday Mike insisted on bringing both kids to the clinic by himself. He said he wanted to know what it was like for me during the week. I was able to run some errands during the off-time and fortunately the clinic visits were quick on both days. On Saturday we got great news, Olivia's white blood count was way down to 15. Unfortunately we learned today that it was back up to 22. At this point we're not sure at all what is going on. We'll have to wait until Monday to see what the attending doctor has to say. We're nervous, it is frustrating and stressful not to know what is going on. At the same time Olivia seems to be feeling okay so we're not super concerned. We're just frustrated, we feel like we're stuck here in Durham and not quite sure why. Mike is sad that he's in a big empty house by himself and I'm tired of dealing with both kids all by myself. We're ready for the next phase of our journey but we're stuck here until we know it's safe for Olivia to leave Durham.

This weekend Mike went shopping on Black Friday and he'll be posting a recap of his shopping experience. We also went to Duke Gardens today and took some pictures for our Christmas card. The weather was beautiful and I'll share some of the photos later.